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        New Message Board Archives >> 2006 General Board Posts >> Dylan's SP Survey PLEASE RESPOND!!
        
(Message started by: Dylan on Nov 25th, 2005, 2:19pm)
Title: Dylan's SP Survey PLEASE RESPOND!!
Post by Dylan on Nov 25th, 2005, 2:19pm
As you all know I have been planning to post a survey for some time now and it is finally ready  ;;D.  You guys can either just post your reply's on this message board, or if you do not want to have all of the information public, you can send me a private message or e-mail your reply to dhoseas06@yahoo.com.

I am extremely thankful to everybody who completes this survey and i am looking forward to seeing the results.

Dylan

Dylan's Cluster Survey

1.      What is your age?

2.      What is your gender?

3.      What is your race?

4.      What is your weight and height?

5.      At what age did you first experience cluster headaches?

6.      How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain.

7.      How long have you been suffering?

8.      Have you ever been misdiagnosed? If so, what were you diagnosed with?

9.      Which side of your head do your headaches occur?

10.      Are you an episodic or chronic sufferer?

11.      If episodic, what is the pattern and duration of your cycles?

12.      During an episode, how many headaches do you have per day?

13.      If you are a chronic sufferer, how many headaches do you have per day?
14.      Which preventative treatments have you tried? Which have been successful? Which have not? Explain.

15.      Which abortive treatments have you tried? Which have been successful? Which have not? Explain.

16.      Do you prefer pharmaceutical or alternative treatments? Explain.
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by DonnaHar on Nov 25th, 2005, 2:48pm
Dylan,

While you're waiting for answers to your survey, you might find a lot of useful information in the links to the left of the page.....check out, for one, the medication survey.

There's a lot of good info here already.
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Dylan on Nov 25th, 2005, 5:06pm
I realize that there is a ton of excelent information on this website already, however my assignment requires me to do something that is my own for the senior project. I will post a description of my assignment on this topic again just incase some people havn't read it yet.

-Dylan
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Dylan on Nov 25th, 2005, 5:10pm
For people who do not know what i am doing this survey for, i reposted my senior project description:


Hello, my name is Dylan and I am a 17 year old senior in high school who has been suffering from cluster headache since I was in 8th grade (13).  

Every year at my school Clark Montessori, the seniors do what is called a senior project.  This is no ordinary high school project, however. Every senior gets to choose a topic and will research it over the whole year.  

With this project, there are several different parts: One part is a paper. For this paper, we will have to write 20+ pages (mine will most likely be closer to 30) on the topic that we choose.  Along with the paper, we are required to do what is called a “senior product.” For this product, our goal is to create something that captures the research investigation. Last, in May, we will give a presentation of our projects.  

If you have not already guessed it, my senior project topic is cluster headache with the research question, “What are the most effective treatments for cluster headache?”  
Since it is already pretty late in the year, I already have the first draft of my introduction complete which just introduces cluster headaches (I am having trouble attaching it to this response; I will post my intro on a later date).  

For my product, I am conducting a survey of people who experience cluster headache. The primary purpose of my product is to provide information about other cluster headache sufferers and their experiences with different treatments, both pharmaceutical and alternative. I want to be able to compare and contrast the different treatments that cluster victims have used and look for patterns in the data.  


-Dylan
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Racer1_NC on Nov 25th, 2005, 5:33pm
Completed survey sent to email provided.

Bill
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by chewy on Nov 25th, 2005, 6:20pm
Sent to email
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by MJ on Nov 25th, 2005, 8:36pm
                       Dylans Cluster Survey


1)   47

2)   Male

3)   Caucasian

4)   6' 210 lbs

5)   18

6)   Medical diagnosis by nuerologist.

7)   allmost 30 years

8 )   Yes. multiple things ranging from migraine to allergic reactions

9)   Right

10) Variable episodic. or both

11) 4 months to years

12) 8- 12

13)

14) too many to remember all. Oxygen, Prednisone, Cafergot, Sansert, Imitrex, Valium, Ergomine tartrate, Verapamil, Propanolol, morphine, Antihistamines, Nuerontin, Percoset and many other pain meds, Extreme doses of Ibuprofen and tylenol, Naprosen, Ephedrine, other steroids. LSA.

All have failed except Prednisone, ephedrine and LSA.

Prednisone has temporarily stopped a cycle.
Ephedrine has helped to make attacks easier.
LSA recent use suggests some positive results.

15) See above. I dont remember the differences between abortives and Preventatives in the meds

16) Have not used pharma in nearly 10 years, Alternatives preferred.
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by AussieBrian on Nov 25th, 2005, 9:45pm
Done my bit.
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by unsolved1 on Nov 25th, 2005, 11:49pm
Done deal. Check your e-mail. Hope it helps.

UNsolved
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Jasmyn on Nov 26th, 2005, 2:41am
Sending it ;)
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Gator on Nov 26th, 2005, 3:55am
Done!  Good luck with it!!!
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by zanychef on Nov 26th, 2005, 4:39am
sent :)
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Dave_Emond on Nov 26th, 2005, 4:43am
Cool thing you're doing Dylan!

Dylan's Cluster Survey

1. What is your age? 45

2. What is your gender? M

3. What is your race? Caucasian

4. What is your weight and height? 5'8" 150lbs.

5. At what age did you first experience cluster headaches? 35

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain.
3 years of dumb doctors, finally a Neuro pinned it, found new website (CH.com) and instantly knew I wasn't alone.

7. How long have you been suffering? 10 years

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?  Yes: Sinus, TMJ, junkie!

9. Which side of your head do your headaches occur? Right side

10. Are you an episodic or chronic sufferer?  
Chronic
11. If episodic, what is the pattern and duration of your cycles?  N/A

12. During an episode, how many headaches do you have per day? N/A

13. If you are a chronic sufferer, how many headaches do you have per day? Minimum 4 - Max 10
14. Which preventative treatments have you tried? Which have been successful? Which have not? Explain.
All ... that I know of: no success
15. Which abortive treatments have you tried? Which have been successful? Which have not? Explain.
All ... that I know of: no success
16. Do you prefer pharmaceutical or alternative treatments? Explain.
Neither ... don't respond well to either. Will be trying Nerve Blocks though this month.
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by burnt-toast on Nov 26th, 2005, 9:09am
1.      What is your age?  46

2.      What is your gender?  Male

3.      What is your race?  Caucasian

4.      What is your weight and height? 228#; 6' 6"

5.      At what age did you first experience cluster headaches?  35

6.      How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain.  Neurological exams, battery of neurological tests/scans, self research.

7.      How long have you been suffering? 11 years

8.      Have you ever been misdiagnosed? If so, what were you diagnosed with? Yes, by G/P and Neurologist with A-Typical Migranes for first two years.  

9.      Which side of your head do your headaches occur?  Right

10.      Are you an episodic or chronic sufferer?  Chronic from the get go but experience predictable chronic cycles.

11.      If episodic, what is the pattern and duration of your cycles?

Chronic Cycles - Oct. through June - high frequency/severity, mostly night attacks, Kip 5 - 10 most common, one day break every now and then.

July through Sept. lower frequency/severity, mostly evening attacks, Kip 2 - 5 most common, four day breaks possible.

12.      During an episode, how many headaches do you have per day?

13.      If you are a chronic sufferer, how many headaches do you have per day?  

Oct. through June - average 5 attacks per night with up to 8 possible.

July through Sept. average just less than one attack per  evening, with up to 3 possible.      

14.      Which preventative treatments have you tried? Which have been successful? Which have not? Explain.
Lithium Carbonate, Verapamil, Caffergot (taken as a preventative), Melatonin, Prednesone tapers, various Steroid injections, condensed Cinnamon tea (made from natural bark).  Found nothing to prevent - mix of Lithium Carbonate 1200mg, Verapamil 720mg and Melatonin 9mg help.  Have not tried the many meds. that have too many/too dangerous side effects.  Prednesone was a stretch that I tried in the hopes of finding relief.    

15.      Which abortive treatments have you tried? Which have been successful? Which have not? Explain.  Oxygen, Zomig, Imitrex; 1million extra strenght Excedrin Valium, Percoset (taken during 1st two years) - have not responded to abortives - currently use very hot tea/intense concentration on lighted objects to endure the pain of attacks.  

16.      Do you prefer pharmaceutical or alternative treatments? Explain.  Prefer neither, take pharmaceuticals but haven't done much research into alternatives.  
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by LadyElaine on Nov 26th, 2005, 11:02am
I also emailed to the above address.
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Charlie on Nov 26th, 2005, 12:17pm
Hopefully my message made it.

Good luck Dylan.

Charlie
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by maffumatt on Nov 26th, 2005, 12:21pm
in the mail
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by cootie on Nov 26th, 2005, 2:22pm
Did it done that.....had trouble gettin it to send so HOPE it went thru ok ?? Brad's was thru a second party.......me Pam  :)
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by john_d on Nov 26th, 2005, 5:30pm
Dylan's Cluster Survey

1.      What is your age?
36
2.      What is your gender?
Male
3.      What is your race?
White
4.      What is your weight and height?
215-220 76"
5.      At what age did you first experience cluster headaches?
17 or so
6.      How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain.
Diagnosed in the military, had not heard of them before that
7.      How long have you been suffering?
that would make it about 20 years, but sporadically
8.      Have you ever been misdiagnosed? If so, what were you diagnosed with?
I diagnosed myself as sinus headaches, hated doctors
9.      Which side of your head do your headaches occur?
left
10.      Are you an episodic or chronic sufferer?
episodic
11.      If episodic, what is the pattern and duration of your cycles?
4-6 weeks
12.      During an episode, how many headaches do you have per day?
about 3 a night, sometimes more
13.      If you are a chronic sufferer, how many headaches do you have per day?
NA
14.      Which preventative treatments have you tried? Which have been successful? Which have not? Explain.
None
15.      Which abortive treatments have you tried? Which have been successful? Which have not? Explain.
Lidocaine, oxygen, oxygen worked great
16.      Do you prefer pharmaceutical or alternative treatments? Explain.
alternative

good luck
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by MJ on Nov 27th, 2005, 2:46pm

Helping Dylan a fellow clusterhead with a bump. there must be more than 18 people here. His grade depends on you.

Of course its probably in the mail if all 228 readers responded.

Dylan how goes the responses?
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by cazman on Nov 27th, 2005, 3:41pm

1. What is your age? 37

2. What is your gender?  M

3. What is your race? ITALIAN\AMERICAN INDIAN

4. What is your weight and height? 145 6'

5. At what age did you first experience cluster headaches? 19

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain. LOTS OF DOCTORS OVER 15 YEARS

7. How long have you been suffering? LITTLE OVER 15 YEARS

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?  YES SINUS INFECTION/TEETH/LAZY EYE/NECK PROBLEM

9. Which side of your head do your headaches occur?  RIGHT

10. Are you an episodic or chronic sufferer?  
WENT CRONIC THIS PAST WINTER
11. If episodic, what is the pattern and duration of your cycles?  

12. During an episode, how many headaches do you have per day?  

13. If you are a chronic sufferer, how many headaches do you have per day?  NONE NOW THANKS TO LSA TREATMENTS, BUT IT WAS ANY WHERE FROM 6 TO 10 A DAY
14. Which preventative treatments have you tried? Which have been successful? Which have not? Explain.NEURONTIN- DID NOTHING TO STOP HA'S, ADDERALL- STOPPED HEADACHES FOR AWHILE BUT I COULD NOT EAT OR SLEEP ON IT SO I DROPPED, LITHIUM- WASTE OF TIME NO HELP AT ALL,  LSA RULES ITS SAVED MY LIFE, IM 3 MONTHS PF THANKS TO IT
15. Which abortive treatments have you tried? Which have been successful? Which have not? Explain.O2- CAUSED REAL BAD REBOUND HA'S, RELPAX TO EXPENSIVE FOR A DRUG THAT RARELY WORKS FOR ANYONE MORE THAN ONE MONTH THAN IT STOPPS WORKING,COCAINE WORKED GREAT BUT CAUSED MANY ODVIOUS PROBLEMS AND RISKS.SHOWERS, HEAT, COLD, ALL THE EXTERNAL TRICKS THEY HELP A BIT BUT NOT CLOSE TO ENOUGH

16. Do you prefer pharmaceutical or alternative treatments? Explain.I THINK THE DRUG COMPANIES ARE RIPPING US ALL OFF AND THE PRODUCTS THEY PUT OUT CAN HURT MORE THAN THEY HELP IN THE LONG RUN THEY ARE ONLY INTERESTED IN MONEY NOT OUR HEALTH, IM A TOTAL AND FIRM BELIEVER IN THE ALTERNATIVES WHY CAUSE THEY ACCTUALLY WORK AND THE SIDE EFFECTS IN THE LONG RUN ARE VERY TINY IF AT ALL
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Dylan on Nov 27th, 2005, 4:25pm
Awsome stuff so far, keep em' comming  ;) ;;D
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Redrum on Nov 28th, 2005, 10:08am
Dylan's Cluster Survey

1. What is your age?
-42

2. What is your gender?
-Male

3. What is your race?
-Caucasian (jewish)

4. What is your weight and height?
-5'6" 125 lbs.

5. At what age did you first experience cluster headaches?
-20 ish

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain.
-This website...I had eventually been "diagnosed" by my neuro as migrane and was on verapimal with limited success. then about 6 or 7 years ago I found this site and bingo.

7. How long have you been suffering?  
-about 22 years

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?  
-Yes:
-eye strain
-tension headaches
-TMJ
-sinus infection
-allergies

9. Which side of your head do your headaches occur?  
-Right

10. Are you an episodic or chronic sufferer?  
-I was chronic for the first 14 years or so then switched to episodic now (thank god)

11. If episodic, what is the pattern and duration of your cycles?  
-No hard set patterns but in general go into cluster late spring and/or late fall for 8 to 12 weeks.  usually get hit late afternoon (4:00~6:00 pm) and late evening (10:00~11:00 pm) with occasional wakeups at 1 or 2 am

12. During an episode, how many headaches do you have per day?
-usually 1 or 2 but as many as 3 or 4

13. If you are a chronic sufferer, how many headaches do you have per day?  
-When i was chronic it would swing from 1 or 2 to as many as 4 or 5

14. Which preventative treatments have you tried? Which have been successful? Which have not? Explain.
-Verapimal helped reduce the number of daily HAs but lowered my blood pressure to much
-quit drinking (alchohol) during episodes...definate trigger
-had one doc tell me to eat a daily bran muffen with local honey...no help
-chiro treatments...no help

15. Which abortive treatments have you tried? Which have been successful? Which have not? Explain.
-no help at all:  OTC pain killers, Stadol, cafergot
-Definate help:  OXYGEN 8-12 lpm pure (clustermasx)
-somehelp: Imitrix nasal seemed to help sometimes but not consistantly or fast enough (haven't tried injecting), Lidocane doesn't really help the HA but can sometimes make squeezing the O2 mask to my face more comfortable.  Ice packs, heat packs, stretching, walking relxation/breathing techniques etc. don't do much to help the pain but make a difference psychologicaly, at least i feel like Im doing something and help me get through

16. Do you prefer pharmaceutical or alternative treatments? Explain.
I prefer Oxygen (is that Pharm or Alt?)...it works


~Andy
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Melissa on Nov 28th, 2005, 10:41am
sent to email
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Goat on Nov 28th, 2005, 10:43am

on 11/25/05 at 14:19:59, Dylan wrote:
Dylan's Cluster Survey

1.      What is your age?  43

2.      What is your gender?  Male

3.      What is your race? Multi

4.      What is your weight and height?  5'8"  170lbs

5.      At what age did you first experience cluster headaches?  approx age 10-11

6.      How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain.  diagnosed in 93-94 time and never even head of clusters till then.

7.      How long have you been suffering?  approx 33 years

8.      Have you ever been misdiagnosed? If so, what were you diagnosed with?  migreens, sinus headaches/infections, Got several teeth pulled, sinuses scrapped,

9.      Which side of your head do your headaches occur?  Right

10.      Are you an episodic or chronic sufferer?  Chronic as of Oct 13th

11.      If episodic, what is the pattern and duration of your cycles?

12.      During an episode, how many headaches do you have per day?  4-8 when I was Episodic

13.      If you are a chronic sufferer, how many headaches do you have per day? 3-8
14.      Which preventative treatments have you tried? Which have been successful? Which have not? Explain.
Lsa seeds no effect, Started Kudzu, no effect yet.

15.      Which abortive treatments have you tried? Which have been successful? Which have not? Explain.
Caffine(coke),some help/ Ice packs, little help/ O2, Helps pretty fast(10-15 min)

16.      Do you prefer pharmaceutical or alternative treatments? Explain.  Some of each O2, Caffine, Ice packs,



Hope this helps

Mike (Goast,Goat)
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by imnotbub on Nov 28th, 2005, 10:51am
1. What is your age? 48

2. What is your gender? Male

3. What is your race? Cauc

4. What is your weight and height? 6'1" Slim 295

5. At what age did you first experience cluster headaches? 44?

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain. The symptoms match other described CH sysmptoms to a tee.

7. How long have you been suffering?  Four years, on and off.

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?  No

9. Which side of your head do your headaches occur?  Left

10. Are you an episodic or chronic sufferer?  Episodic

11. If episodic, what is the pattern and duration of your cycles?  Every other year, as little as 2 days, as long as 45(from memory, error margine of a few days)

12. During an episode, how many headaches do you have per day?  1

13. If you are a chronic sufferer, how many headaches do you have per day?

14. Which preventative treatments have you tried? Which have been successful? Which have not? Explain.
None

15. Which abortive treatments have you tried? Which have been successful? Which have not? Explain.
Over the counter pain medication, no effect, Red Bull, become bareable in 5 - 10 minutes, trailing off to slight shadows in 30 minutes

16. Do you prefer pharmaceutical or alternative treatments? Explain.
I try at all costs not to use heavy drugs, scripts and the like. Judging by others descriptions, my CH's don't get quite as severe as some, so I will continue to deal with them without scripts.
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by ExplodingEyeBall on Nov 28th, 2005, 10:53am
Here's me.

1. What is your age? 43

2. What is your gender? Male

3. What is your race? White

4. What is your weight and height? 5'10" 185 pounds

5. At what age did you first experience cluster headaches? Very young. I don't remember. Always had them as far as I know

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain. I saw some information about CH once and then during a cycle, I found clusterheadaches.com and read all day.

7. How long have you been suffering?  as long as I can remember.

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?  TMJ, Sinus infection, eye problems, Wisdom teeth.

9. Which side of your head do your headaches occur?  Mostly the right side. Recently, they have started on the left side.

10. Are you an episodic or chronic sufferer?  Episodic. I don't know how my chronic family here can take it.

11. If episodic, what is the pattern and duration of your cycles?  I haven't been able to put an exact pattern to it. It is very random but mostly season change to spring. That is my worst time and usually goes about 6 weeks.

12. During an episode, how many headaches do you have per day?  3 to 6. Sometimes more.

13. If you are a chronic sufferer, how many headaches do you have per day?  N/A

14. Which preventative treatments have you tried? Which have been successful? Which have not? Explain. I haven't really had a chance to try preventatives yet since my actual 'doctor diagnosis' was about a year ago.

15. Which abortive treatments have you tried? Which have been successful? Which have not? Explain. Maxalt, Imitrex tabs. These were free samples from my neuro. They did seem to shorten the duration of a night time Kip 10.

16. Do you prefer pharmaceutical or alternative treatments? Explain. I'd rather try alternatives myself.
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Jimmy B. on Nov 28th, 2005, 11:09am

on 11/25/05 at 14:19:59, Dylan wrote:
Dylan's Cluster Survey

1.      What is your age?
40
2.      What is your gender?
Male

3.      What is your race?
Caucasion
4.      What is your weight and height?
Six foot exactly

5.      At what age did you first experience cluster headaches?
approx. 15 years old

6.      How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain.
A family doctor...Dr. Cuttone...had diagnosed them after my 1st visit with him. I was sufferering with them for about 10 years at diagnosis.

7.      How long have you been suffering? 25 years

8.      Have you ever been misdiagnosed? If so, what were you diagnosed with?
Never actually diagnosed but they tested for tumors, vascular problems, sinuses, diabetes

9.      Which side of your head do your headaches occur?
always right side

10.      Are you an episodic or chronic sufferer? Episodic

11.      If episodic, what is the pattern and duration of your cycles?
No rhyme or reason...I've gotten them at all times of the year...however lately they have been occuring mainly in the fall and last up to 3 months.

12.      During an episode, how many headaches do you have per day? 4 to 5 at it's peak

13.      If you are a chronic sufferer, how many headaches do you have per day? Not applicable

14.      Which preventative treatments have you tried? Which have been successful? Which have not? Explain.
Verapamil and other BP meds, Prednisone. Non have been successful

15.      Which abortive treatments have you tried? Which have been successful? Which have not? Explain.
In order of appearance....Aspirin, excedrin, tylenol, cafergot, lorcet, imitrex, oxygen, percocet, oxy IR, maxalt. All have been somewhat effective but only imitrex has completely stopped an attack.

16.      Do you prefer pharmaceutical or alternative treatments? Explain.

At this point, I prefer not using anything. I would rather wait out a cycle.
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Dylan on Nov 28th, 2005, 8:21pm
Just a bump
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Kris_in_SJ on Nov 28th, 2005, 8:29pm
1.  51
2.  Female
3.  WASP
4.  5'3" ..... 105 lbs.
5.  Age 42
6.  Same pain, same place, same duration, same time every day.  I'm a former nurse and know the difference between a headache and a particular "type" of headache.  Remembered learning just a little bit about clusters way back when in school - supplemented that with internet research.  I was a classic clusterhead.
7.  Since the age of 42 - you do the math, Dylan.
8.  My first cycle was not ordinary - a 10-week constant shadow - no peaks, but droopy, blood-shot eye.  I was diagnosed with herpes zoster and then with trigeminal neuralgia.  My classic symptoms didn't start until episode #2.
9.  Left
10.  Episodic
11.  Duration on average 10-12 weeks.  Always a hit right after bedtime.  At peak of cycle, also get hit around 3 in the afternoon.  Headaches start in my left sinus and ramp up to an 8 to 9 within minutes - affecting my eye, temple, teeth and jaw.  Medical preventatives have decreased the intensity and duration of actual headaches, but takes a long time to wean off meds, so a 12-week cycle takes about 5 months to totally get over.
12.  See above
13.  N/A
14.  Verapamil at 480mg/day has proved effective.
15.  Imitrex injectibles help within 5 minutes.  So far, it's been my only abortive.
16.  So far, I've been pleased with medical treatment.  However, I was very unhappy with how long it took me to wean off Verapamil this last cycle.  I'm learning about alternatives, so next cycle I'll be more knowledgeable about them.  I'm absolutely not reluctant to try alternatives, whether it be Kudzu or shrooms.  I won't be able to compare effectiveness until I've tried both.

Kris (the willing experimentor)  
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Sandy_C on Nov 28th, 2005, 8:49pm
Sent to e-mail.  Good luck, Dylan
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Drk^Angel on Nov 29th, 2005, 2:08am
1. What is your age?  29

2. What is your gender?  Male

3. What is your race?  Primarily eastern European caucasian and 1/16 Native American

4. What is your weight and height?  285 lbs. and 5'10"

5. At what age did you first experience cluster headaches?  First attack I can remember at age 11, but my parents say I've had attacks just about all my life

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain.  I've always known these headache weren't normal, but a couple few years ago, I was finally diagnosed by a neurologist

7. How long have you been suffering?  At least 18 years

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?  Psychosomatic, migraine, coexisting migraine-TTH, coexisting TTH and unknown headache, and various doctors just giving up

9. Which side of your head do your headaches occur?  Both

10. Are you an episodic or chronic sufferer?  Episodic

11. If episodic, what is the pattern and duration of your cycles?  Normal cycles occur twice a year (summer/winter normally) and last two to three weeks.  Current cycle has been 32 months in duration

12. During an episode, how many headaches do you have per day?  Normal cycle:  Average 8 attacks per day.  Current cycle:  Between 1 to 8 attacks per day.

13. If you are a chronic sufferer, how many headaches do you have per day?  

14. Which preventative treatments have you tried? Which have been successful? Which have not? Explain.  Calcium Channel Blockers, Beta Blockers, Selective Serotonin Reuptake Inhibitors, NSAIDs, narcotics, feverfew, and various other home remedies.  None have been effective in the long term.

15. Which abortive treatments have you tried? Which have been successful? Which have not? Explain.  O2, Triptans, NSAIDs, narcotics, and various other home remedies.  O2 was fairly effective.  The rest was worthless.

16. Do you prefer pharmaceutical or alternative treatments? Explain.  [b]Whatever gets the job done is okay by me

PFDAN........................................ Drk^Angel
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Dylan on Nov 29th, 2005, 3:59pm
bump
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by marlinsfan on Nov 29th, 2005, 5:28pm
e-mail to dhoseas06@yahoo.com on its way.

BUMP!!
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by E-Double on Nov 29th, 2005, 7:32pm
Check your E-mail :)
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Dylan on Nov 29th, 2005, 10:00pm
Hey, does any body know if there is a way that i can make my survey stay at the top like "Dallas-2005" and that other one does? It would be nice not to have to keep bumping my survey  :P.

-Dylan
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by cootie on Nov 29th, 2005, 10:22pm
I think it's called a STICKY or whatever thread and you'd have to have DJ or maybe Margi do it for you so it stays stuck at the top and no bumping. So you'd wanna ask them. Stick it to it Pam

It'd have a stick pin icon to the left of the thread start.  
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by totka2 on Nov 29th, 2005, 11:28pm
1. What is your age?
47

2. What is your gender?
male

3. What is your race?
Caucasian

4. What is your weight and height?
70 kg / 180 cm

5. At what age did you first experience cluster headaches?
22

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain.
Medical diagnosis by neuro

7. How long have you been suffering?
25

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?
for 14 yrs - migraine, "strong headache", hypochondriac, work-shyness

9. Which side of your head do your headaches occur?  
left

10. Are you an episodic or chronic sufferer?
episodic

11. If episodic, what is the pattern and duration of your cycles?  
2 months / 1-2 years

12. During an episode, how many headaches do you have per day?  
0,5 / d in the beginning and 4/d on the peak

13. If you are a chronic sufferer, how many headaches do you have per day?  
-
14. Which preventative treatments have you tried? Which have been successful? Which have not? Explain.
Success: Medrol

15. Which abortive treatments have you tried? Which have been successful? Which have not? Explain.
Success: Imigran inj. and O2/Clustermasx

16. Do you prefer pharmaceutical or alternative treatments? Explain.
Only pharmaceutical ... I hate the taste of snake oil.
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Dylan on Nov 30th, 2005, 10:27am
I was wondering if anybody knew and neurologists or headache specialists that i could send a different survey to.  As well as conducting a survey for people with cluster headaches, i am doing one for people who treat them as well.  

If anyone could e-mail or send me any contacts that would be super helpful.

Thanx,
Dylan
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by tpitts77 on Nov 30th, 2005, 3:10pm
Sent mine I hope it wasn't too late.

What a good student you are.  I would have procrastinated the hell out of this project if I was in school. :)
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Sean_C on Nov 30th, 2005, 5:01pm
Dylan's Cluster Survey

1. What is your age? 39

2. What is your gender? Male

3. What is your race? Human

4. What is your weight and height? 6' 2" 200 LB

5. At what age did you first experience cluster headaches? 13

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain. Went to Faulkner Headache Clinic 1989 and was diagnosed by Nuerologist.

7. How long have you been suffering?  26 years

8. Have you ever been misdiagnosed? If so, what were you diagnosed with? Misdiagnosed for 10 years, no abnormal conditions found.

9. Which side of your head do your headaches occur? Always right side.

10. Are you an episodic or chronic sufferer? Chronic for first 10 years, clusters stopped completely for 3 years and returned Episodic.

11. If episodic, what is the pattern and duration of your cycles?  Spring and fall, 6 to 12 weeks

12. During an episode, how many headaches do you have per day?  Depends, beginning of cycle will be 1 to 3 and peak will be at 6 to 8-10 and then will taper to the end of cycle.

13. If you are a chronic sufferer, how many headaches do you have per day? When I was Chronic it was the same as episodic except I didn't get relief between a cycle.

14. Which preventative treatments have you tried? Lithium, Sancert, Prednisone

Which have been successful? Which have not? Explain. Sancert was the only one.

15. Which abortive treatments have you tried? Imitrex, Oxygen

Which have been successful? Both

Which have not? Explain. N/A

16. Do you prefer pharmaceutical or alternative treatments? Explain. I'm all for alternatives
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by alienspacebabe on Dec 1st, 2005, 12:00am
Emailed tonight.
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by vig on Dec 1st, 2005, 11:18am

on 11/25/05 at 14:19:59, Dylan wrote:
Dylan's Cluster Survey

1.      What is your age?
45
2.      What is your gender?
male
3.      What is your race?
50-yard dash
;;D
white boy
4.      What is your weight and height?
150 - 5'6"
5.      At what age did you first experience cluster headaches?
36
6.      How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain.
by reading
7.      How long have you been suffering?
9 years
8.      Have you ever been misdiagnosed? If so, what were you diagnosed with?
sinus headaCHes
insanity
9.      Which side of your head do your headaches occur?
left only
10.      Are you an episodic or chronic sufferer?
epiCHronic
11.      If episodic, what is the pattern and duration of your cycles?
4 seasonal cycles per year, 2 months each...
12.      During an episode, how many headaches do you have per day?
up to 8
13.      If you are a chronic sufferer, how many headaches do you have per day?
up to 8
14.      Which preventative treatments have you tried? Which have been successful? Which have not? Explain.
Elavil/Amitryptaline - effective but heavy side effects15.      Which abortive treatments have you tried? Which have been successful? Which have not? Explain.
Imitrex - successful but short-lived
Zomig - successful but still short-lived
16.      Do you prefer pharmaceutical or alternative treatments? Explain.
alternative
;;D
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by pattik on Dec 1st, 2005, 11:41am
I sent my responses via email.  Good luck with your project. ;;D
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Ree on Dec 1st, 2005, 3:46pm
I sent the email from my email addy REE16ANGEL@aol.com... my hubby is the sufferer he doesnt type..... good luck and let us know what you get on this project.....

love ree
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Tim_Z on Dec 1st, 2005, 9:11pm
Filled it out and sent it to your email.

Tim
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by pollyanna on Dec 2nd, 2005, 4:46pm
Dylan,
I am not a sufferer but my husband was. I have sent you an email with all of the information that you will need. good luck!

dianna
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by mynm156 on Dec 2nd, 2005, 8:00pm
1. What is your age? 37

2. What is your gender?  M

3. What is your race?  C

4. What is your weight and height? 270  5'9"

5. At what age did you first experience cluster headaches? 27ish

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain.   Didnt know until the Neuro told me and then later learned about them.

7. How long have you been suffering?  10 years

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?  NO

9. Which side of your head do your headaches occur?  Both but mainly Left side

10. Are you an episodic or chronic sufferer?  CHRONIC

13. If you are a chronic sufferer, how many headaches do you have per day?  2-10
14. Which preventative treatments have you tried? Which have been successful? Which have not? Explain.  I have tried Verapamil, Inderal, Prednisone, Lopressor, Depakote, Topamax Lopressor and Verapmil have helped some.

15. Which abortive treatments have you tried? Which have been successful? Which have not? Explain. Maxalt, Zomig, Imitrex, Lidocaine, Butabital, Stadol, O2  imitrex, Zomig and Stadol have been my best.

16. Do you prefer pharmaceutical or alternative treatments? Explain. What ever works  I dont like the feeling of shrooms
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Jonny on Dec 2nd, 2005, 9:24pm
1) 43

2) Male lesbian

3) Im the white flavor

4) 185....6'

5) 12

6) After 14 years I was diagnosed

7) 31 years

8) Yep, sinus crap.

9) 23 years on the left, two years on the right and back to the left.

10) Chronic (Survivor I guess, aint had more than a shadow in a year)

11) N/A

12) N/A

13) When I was chronic (Without meds) it was up to six a day, with meds it was six a month.

14)  Lithium and Verapamil.....the chronics cocktail. it saved my life, it dont work for all....but what does in this cluster fuck?!!!

15) Zomig NS works just as fast for me as Imitrex shots and with no rebounds, plus, it has eight times the half life.

16) I will always go with Pharm, for personal reasons

I dont get points takin away for time do I?

My two fingers hurt now after this post......LOL ;;D

Thanks for what your doing, Dylan!! [smiley=headbanger.gif]
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Delts on Dec 3rd, 2005, 5:15am
Age 39
m
Caucasian
6' 8'' 270lbs
11
consistent patterns emerged was diagnosed 3/4 years ago
yes,sinus, neuralgia, and opthalmaplegic migraine
episodic
about 18months apart 6 to 8 week duration
1-8 a day
N/A
preventatives, pethidine.cafergot,verapmi land beta blockers - no sucess
Alternatives- Imigran nasal spray, O2 got the jabs now havent used one yet
Whatever it takes


Good luck with the pages son , good work ;)
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by jason1212 on Dec 4th, 2005, 5:16am
You should have mine.  Good Luck Dylan!
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by eyes_afire on Dec 4th, 2005, 12:18pm
Dylan's Cluster Survey

1. What is your age?
34 yrs

2. What is your gender?
male

3. What is your race?
mixed

4. What is your weight and height?
5'8'', 164.5 lbs

5. At what age did you first experience cluster headaches?
24 yrs

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain.
Read the book 'Headache Help' by Dr Robbins

7. How long have you been suffering?  
at least 10 or 11 years

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?
Yes.  Sinus problems, migraine.  

9. Which side of your head do your headaches occur?  
left side exclusively

10. Are you an episodic or chronic sufferer?  
Depends.  I've been both.  Currently episodic.

11. If episodic, what is the pattern and duration of your cycles?
Typically, 6 months in cycle and 6 months out of cycle.

12. During an episode, how many headaches do you have per day?  
Typically 1 or 2.  Have had 3 during a few rare peak days.

13. If you are a chronic sufferer, how many headaches do you have per day?
Typically 1 or 2.  Have had 3 during a few rare peak days.
 
14. Which preventative treatments have you tried?
Ginseng, St Johns Wort, Fish Oil, Full Spectrum Light, Magnesium Oxide, Indomethacin, Melatonin, Serzone, Zoloft, Nortriptyline, Trazodone, Paxil, Prednisone, Verapamil, Psilocybin
Which have been successful?
Prednisone - mostly successful
Verapamil - mostly successful
Psilocybin - significantly successful
Which have not?
All others

15. Which abortive treatments have you tried?
Aspirin, Acetominophen, Ice, Hot Sauce, Tramadol, Oxygen, Imitrex Tablets, Imitrex Nasal
Which have been successful?
Oxygen - almost always
Imitrex Nasal - usually
Imitrex Tablets - slow, but better than nothing
Which have not?
All others

16. Do you prefer pharmaceutical or alternative treatments?
The designation is arbitrary.  Whichever works best with least amount of risk and damage.  Right now my guns are cocked and loaded with Verapamil, Imitrex, and Oxygen.
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Dylan on Dec 6th, 2005, 10:05am
Thank you everybody who has responded so far.

I have until late December before my survey needs to be completed in so for everybody who has not completed my survey, IT IS NOT TOO LATE TO RESPOND!  ;;D

Dylan
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by jangus on Dec 8th, 2005, 4:49pm
Dylan's Cluster Survey
1. What is your age? 49

2. What is your gender? Male

3. What is your race? Caucassian

4. What is your weight and height? 155lbs; 5' 9"

5. At what age did you first experience cluster headaches? 23

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain. Saw a Neurologist at Scripps Clinic in San Diego in 1987; had an MRI; he diagnosed me with "Classic Eposodic Cluster Headaches".

7. How long have you been suffering?  26 years

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?  Wisdom teeth cutting back in the early days (1980's).

9. Which side of your head do your headaches occur?  Mostly left, but one or two cycles i recall being on the right.

10. Are you an episodic or chronic sufferer?  episodic

11. If episodic, what is the pattern and duration of your cycles?  18 -24 months

12. During an episode, how many headaches do you have per day?  1 or 2

13. If you are a chronic sufferer, how many headaches do you have per day?  

14. Which preventative treatments have you tried? Regular exercise; quit smoking cigarettes; reduce alcohol intake; eat more LSD & Psilocybin

Which have been successful? Regular exercise; quit smoking cigarettes; reduce alcohol intake; eat more LSD & Psilocybin

Which have not?

15. Which abortive treatments have you tried? Cafergot; Maxalt; Lidocaine; Melatonin; Apple Cider Vinegar; Hot Black Coffee; Oxygen; many various Accupuncture treatments and Chinese herbs including 'Moxie' treatments, Kudzu Root, Feverfew; Bock Flower Remedy (Rescue Remedy); Cranial Sacrum Therapy; Quantum Energetics Therapy; Prednesone; Dilaudid; Demerol; Cannabis; Psilocybin; LSD; reformated diet; Which have been successful? Oxygen according to specifics found on THIS website paired with Rescue Remedy and a cup of black coffee...   ...worst case, add Maxalt ($$); Quantum Energetics.

Which have not? Explain. Lidocaine was uncomfortable and didn't seem to work. Cranial Sacrum Therapy; Prednesone

16. Do you prefer pharmaceutical or alternative treatments? Explain. Alternative is non-invasive and has virtually no side-effects. Quantum Energetics seems to have helped me cut my last two cycles short. My cycles have always been somewhere between six and ten weeks with a headache at least every other day. Since getting Quantum Energetics sessions, I've cut the cycles down to three to four weeks, and my last cycle was 3 years and 1 month ago. She cut this recent cycle down to 24 days!

http://quantumenergeticshealing.com/judith.html

Good luck Dylan with getting an "A" on this project!
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Beastfodder on Dec 9th, 2005, 11:20am
1. What is your age?
45

2. What is your gender?
Male

3. What is your race?
caucasian

4. What is your weight and height?
6ft & 13stone (ish)

5. At what age did you first experience cluster headaches?
37

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain.
Doctor's first diagnosis of CH was of sinus headaches 7+ years ago - but I have history of bunged up sinuses, then atypical trigeminal neuralgia (2 year) both were wrong and I diagnosed myself initially off the web reading about ATN where CH was described - Road to Damascus moment that.

7. How long have you been suffering?  
That's a deep question - but right now I'm not actually

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?  
See above- had rhinoplasty and sinus surgery as well.

9. Which side of your head do your headaches occur?  
lhs

10. Are you an episodic or chronic sufferer?  
episodic

11. If episodic, what is the pattern and duration of your cycles?  
Autumn, 2 1/2 months of headaches up to 3 per day usually 2 1/2 hours in length - do think they increased in severity and frequency over time (but not any more)

12. During an episode, how many headaches do you have per day?  
Usually one or two and rarely three. One diary showed over 50 at kip 7 or 8 over the cycle as a whole

13. If you are a chronic sufferer, how many headaches do you have per day?  

14. Which preventative treatments have you tried? Which have been successful? Which have not? Explain.
1 Clusterbusters - abortive and preventive. First full year and its been 4 x 1 hour headaches, partly caught by dosing. Closed down last year's cycle too.
2 O2 - been an effective back-up and abortive this year stopping headaches developing from the leaky bit

15. Which abortive treatments have you tried? Which have been successful? Which have not? Explain.
See above
16. Do you prefer pharmaceutical or alternative treatments? Explain.
You should be able to tell where this is going - pizotifen was tried as the abortive for the cycle - it was nasty and of limited impact over 5-6 wks, Maxalt melts partially effective as abortive - but also capable of delivering really nasty rebound headaches - and was used the only time I went to at least a kip 9.  carbamazepine (sp?) was the drug used when I was diagnosed as Atypical TN - pretty nasty stuff and totally useless.  Pretty hardcore prescription painkillers from the sinus days like Voltarol - again useless for the pain.

[font=Verdana][/font][b][/b]
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by StressFree on Dec 9th, 2005, 5:28pm
1. What is your age?  38

2. What is your gender? Male

3. What is your race? Caucasion

4. What is your weight and height? 180lbs 5'10"

5. At what age did you first experience cluster headaches? 15

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain.  A neurologist in Encino, CA diagnosed cluster headaches though a family practicioner had mentioned possible "Horton's Syndrome".

7. How long have you been suffering?  24 years off and on

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?  Yes. TMJ, allergies, impacted wisdom teeth, vision problems, tension headache, scoliosus.

9. Which side of your head do your headaches occur?  Left.

10. Are you an episodic or chronic sufferer?  Started chronic, went episodic after treatment with verapamil.

11. If episodic, what is the pattern and duration of your cycles?  6 weeks of cluster cycle, with 2 to 4 years between cycles.

12. During an episode, how many headaches do you have per day?  When chronic-1 per day. When episodic-anywhere from 1 to 6 per day and night.

13. If you are a chronic sufferer, how many headaches do you have per day?  
14. Which preventative treatments have you tried? Verapmamil and Prednisone. Which have been successful? Both. Which have not? Verapamil alone didn't seem to knock out a cycle two different times. Anti-histamines never seemed to help. Explain.

15. Which abortive treatments have you tried? Imitrex, Cafergot, Maxalt. Which have been successful? Cafergot and Maxalt worked best. Which have not? Imitrex tabs caused multiple daily attacks and ended up not working at all, even made the pain of the attacks worse when it quit working. Explain.

16. Do you prefer pharmaceutical or alternative treatments? Explain.  Pharmaceutical treatment is all I've tried. I would be tempted to try the alternative treatments if I were chronic. I had tried many alternative treatments as a teenager, but mostly for recreational abuse and temporary easing of headache pain.
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Carl_D on Dec 10th, 2005, 2:16am
Dylan's Cluster Survey

1. What is your age? 35

2. What is your gender? Male

3. What is your race? Native mixed/ Caucasian

4. What is your weight and height?  5'7"  187lbs

5. At what age did you first experience cluster headaches? 17

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain. I explained to my GP at the time that they would wake me up from deep sleep when bombs couldn't wake me up, it felt like my eyeball was frozen and there was alot of pressure in the temple. My eye would run and turn red."  He diagnosed my right off the bat though wanted to have an MRI done to rule out a tumor or anuerysm But I could not afford the 450 bucks upfront since I had no insurance. He told me I had a "classic case of cluster headaches and though rare, they can be a bear to treat" - BEAR MY ASS!!! It wasn't until I could afford to pay out of my own pocket for an MRI in 1994 that it was confirmed not a tumor or aneurysm, but indeed clusters. Was treated at Michigan Head Pain and Neurological Institue.
7. How long have you been suffering?  18 years

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?  Was diagnosed with TMJ and two misalginments in my neck. My neck has been fixed but didn't fix my clusters.

9. Which side of your head do your headaches occur?  Primarily on the right, but have got them to less severity on the left before. But 98% of the time a righty

10. Are you an episodic or chronic sufferer? Episodic from age 17 - 28, chronic from 28 - 35 -present

11. If episodic, what is the pattern and duration of your cycles?  Spastic and Erratic. No ryhme no reason

12. During an episode, how many headaches do you have per day?  2-8
13. If you are a chronic sufferer, how many headaches do you have per day?  2-14
14. Which preventative treatments have you tried? Calcium Channel blockers, beta blockers, prednisone taper, sansert, Ercaf, Lithium, Verapamil, Indomethacin, Neurontin, Depakote, Topamax, Olanzapine, Elavil, High concentrate of Vite B-12 (methocobalamin), too man to remember Which have been successful? Verapamil worked with some success back in 94'95 and '97, but when I went chronic in 1998, it lost its effectiveness, even with 02.Which have not? everything under the sun
15. Which abortive treatments have you tried? Which have been successful? Which have not? Explain.

16. Do you prefer pharmaceutical or alternative treatments? Alternative. I like the idea of maybe doing an 'controlled environtment' for dosing people with cluster headaches the proper dosage in order to greak theier cluster cycle. Some may need 3 sessions a year, some may need a session every couple of months, or some chronics may need monthly sessions. I would rather do something to potentially give me my life back at a larger capacity than pay the drug companies for meds I cannot afford that make me feel like I am less than dirt and are killing me in the long run
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Dylan on Dec 15th, 2005, 10:07am
Once again, thank you everybody who has responded so far.

I have until late December before my survey needs to be completed and turned in so for everybody who has not completed my survey, IT IS NOT TOO LATE TO RESPOND!  

Dylan
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by PerryGR on Dec 15th, 2005, 9:14pm
Hope this can still be of some use.

1. What is your age?
- 23

2. What is your gender?
- male

3. What is your race?
- Caucasian

4. What is your weight and height?
- 225lbs 5'9''

5. At what age did you first experience cluster headaches?
- 19

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain.
- I was diagnosed by a Headache Specialist

7. How long have you been suffering?  
- 4 years

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?  
- Yes. - Trigeminal Neuralgia, Migraine without aura

9. Which side of your head do your headaches occur?  
- both

10. Are you an episodic or chronic sufferer?
- Chronic

11. If episodic, what is the pattern and duration of your cycles?  
- N/A

12. During an episode, how many headaches do you have per day?  
- N/A

13. If you are a chronic sufferer, how many headaches do you have per day?  
- It fluctuates alot throughout the year. Generally 1-5.

14. Which preventative treatments have you tried? Which have been successful? Which have not? Explain.
- Depakote, combination of DHE (taken orally) and Beta Blockers, Topiramate, Flunarizine, Amitriptyline, Verapamil, Lithium, combination of Verapamil and Lithium, Methyloprednisolone, combination fo Verapamil, Lithium, Methyloprednisolone.
- They all -apart from Lithium- worked for about a month but then i had to adjust the dosages or move on to the next treatment.
- Lithium didn't work.

15. Which abortive treatments have you tried? Which have been successful? Which have not? Explain.
- OTC pain-killers, prescription pain-killers, triptans, oxygen, ice, heat.
- Triptans, oxygen and ice/heat have been successful, although none 100%
- OTC or prescription pain-killers.

16. Do you prefer pharmaceutical or alternative treatments? Explain.
- I don't have a preference as long as the pain goes away.



PFDAN to all,
Perry.
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by kcopelin on Dec 27th, 2005, 12:28pm
e-mailed response.  sorry it took so long.
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by GingerS224 on Dec 29th, 2005, 2:43pm

on 11/25/05 at 14:19:59, Dylan wrote:
As you all know I have been planning to post a survey for some time now and it is finally ready  ;;D.  You guys can either just post your reply's on this message board, or if you do not want to have all of the information public, you can send me a private message or e-mail your reply to dhoseas06@yahoo.com.

I am extremely thankful to everybody who completes this survey and i am looking forward to seeing the results.

Dylan


Dylan's Cluster Survey


1.      What is your age?    40

2.      What is your gender?   Female

3.      What is your race?     Caucasian

4.      What is your weight and height?  120lbs.  5'4"

5.      At what age did you first experience cluster headaches?   35

6.      How did you come to realize that the headaches that you experience are cluster headaches and not some other condition?        Did research online 1st then after suffering for 3 years it got to the point where I could not function at all so I went to a Neurologist and got diagnosed.

7.      How long have you been suffering?  5 + 3/4 years

8.      Have you ever been misdiagnosed?   No
If so, what were you diagnosed with?

9.      Which side of your head do your headaches occur?    Left

10.      Are you an episodic or chronic sufferer?   Chronic

11.      If episodic, what is the pattern and duration of your cycles?

12.      During an episode, how many headaches do you have per day?   Before daily medication I was having 10-14 per day, now I am able to go a day or two per week with out having one.

13.      If you are a chronic sufferer, how many headaches do you have per day?   Two

14.      Which preventative treatments have you tried?  Verapamil  and  Imitrex shots.   Which have been successful?   Verapamil  and  Imitrex shots.   Which have not?   N/A

15.      Which abortive treatments have you tried?    Imitrex shots.   Which have been successful?  Imitrex shots.    Which have not? N/A.

16.      Do you prefer pharmaceutical or alternative treatments? I have only tried Pharmaceutical treatments.
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by mick2457 on Jan 7th, 2006, 9:09am
Here is my two cents worth

1. What is your age? 48
2. What is your gender? M

3. What is your race? 100M dash ;;D (Cauc)

4. What is your weight and height? 5'11; 195

5. At what age did you first experience cluster headaches? 18

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain. GP in england who cared enough to investigate
7. How long have you been suffering?  30 years

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?  only during the first visits with above with migraine suspected

9. Which side of your head do your headaches occur?  L

10. Are you an episodic or chronic sufferer?  E

11. If episodic, what is the pattern and duration of your cycles?  aro 8-10 weeks mostly spring or fall - this year Xmas

12. During an episode, how many headaches do you have per day?  2-4

13. If you are a chronic sufferer, how many headaches do you have per day?  
14. Which preventative treatments have you tried? Which have been successful? Which have not? Explain.

15. Which abortive treatments have you tried? Which have been successful? Which have not? Explain. most of the "older' ones except oxygen and lithium - have some success with imitrex injections when really bad. Ice helps on milder ones

16. Do you prefer pharmaceutical or alternative treatments? Explain. alternatives most of the time unless unbearable. Ice, air conditioners, accupressure and aggressive massage on same side as CH etc = if necc. use chemistry
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by lady_bug on Jan 10th, 2006, 3:06pm
Dylan's Cluster Survey

1. What is your age? 47

2. What is your gender? Female

3. What is your race? Caucasian

4. What is your weight and height? 5'6"  138

5. At what age did you first experience cluster headaches?  10 or 11

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain.  
I was finally properly diagnosed in my late 20's.

7. How long have you been suffering?  
over 30 years total / currently about 6 weeks

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?  
I was diagnosed with anxiety first and migraines second prior to the proper diagnosis

9. Which side of your head do your headaches occur?  
Always the right side

10. Are you an episodic or chronic sufferer?  
episodic

11. If episodic, what is the pattern and duration of your cycles?  
No pattern / duration is usually about 8-12 weeks

12. During an episode, how many headaches do you have per day?  
Anywhere from 1-8

13. If you are a chronic sufferer, how many headaches do you have per day?  
N/A

14. Which preventative treatments have you tried? Which have been successful? Which have not? Explain.
Verapmil has worked the best for me.  Occasionally Prednisone when needed.

15. Which abortive treatments have you tried? Which have been successful? Which have not? Explain.
I use Imitrex injections and just got Oxygen yesterday, haven't tried it yet so I don't know if it works for me.
Imitrex works great.

16. Do you prefer pharmaceutical or alternative treatments? Explain.
I have yet to try alternative treatments.  
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Lissa on Jan 11th, 2006, 2:02pm

on 11/25/05 at 14:19:59, Dylan wrote:
As

Dylan's Cluster Survey


1.      What is your age? 26

2.      What is your gender? F

3.      What is your race? White

4.      What is your weight and height? 5'4"/110

5.      At what age did you first experience cluster headaches? 16 years old

6.      How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain.  I was first diagnosed with a sinus headache at 16.  Never got diagnosed with clusters until age 20.

7.      How long have you been suffering? 10 years.

8.      Have you ever been misdiagnosed? If so, what were you diagnosed with? Yes.  I was misdiagnosed with a sinus headache and with migraines.

9.      Which side of your head do your headaches occur? right

10.      Are you an episodic or chronic sufferer? episodic

11.      If episodic, what is the pattern and duration of your cycles? No pattern.

12.      During an episode, how many headaches do you have per day? 1-2

13.      If you are a chronic sufferer, how many headaches do you have per day?

14.      Which preventative treatments have you tried? Which have been successful? Which have not? Explain.  Verapamil works.  Currently trying kudzu.

15.      Which abortive treatments have you tried? Which have been successful? Which have not? Explain.  Imitrex and oxygen both work.

16.      Do you prefer pharmaceutical or alternative treatments? Explain.  I don't really care.  Whatever works.
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by DANIAOD on Jan 13th, 2006, 8:59pm
What is your age?  57
2. What is your gender? female
3. What is your race? tropical white

4. What is your weight and height? 60 k; 1.73 height

5. At what age did you first experience cluster headaches?  18 years old
6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain. A neuro diagnosed me. And after Y met many others cluster heads here and in the spanish web with the same conditions

7. How long have you been suffering? almost 40 years

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?  many times: trigeminal, sinus, hepilepsya, glaucoma...and so on
9. Which side of your head do your headaches occur?  left always left
10. Are you an episodic or chronic sufferer?  episodic
11. If episodic, what is the pattern and duration of your cycles?  I have not pattern, i have not normal duration. My beast is erratic

12. During an episode, how many headaches do you have per day?  sometimes one but some times 10, the average is 4-5
13. If you are a chronic sufferer, how many headaches do you have per day?  
14. Which preventative treatments have you tried? Which have been successful? Which have not? Explain.
inderal, and diltiazem. I thing nothing is successful
15. Which abortive treatments have you tried? Which have been successful? Which have not? Explain.
Indometacin and o2. Both had work but in that cycle not always work
16. Do you prefer pharmaceutical or alternative treatments? Explain.
I prefer what cure me, but I want anf proff any thing
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Richr8 on Jan 15th, 2006, 8:25pm

1. What is your age? 52

2. What is your gender? M

3. What is your race? C

4. What is your weight and height? 205 70"

5. At what age did you first experience cluster headaches? 38

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Diagnosis by GP then referral to Neurologist with confirmation.Explain.

7. How long have you been suffering?  14 yrs.

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?  Yes.  Sinusitis.

9. Which side of your head do your headaches occur?  Right side only

10. Are you an episodic or chronic sufferer?  Episodic

11. If episodic, what is the pattern and duration of your cycles?  

12. During an episode, how many headaches do you have per day?  1 - 3

13. If you are a chronic sufferer, how many headaches do you have per day?  
14. Which preventative treatments have you tried? Which have been successful? Which have not? Explain.  Verapami and I still have yearly episodes.  no others

15. Which abortive treatments have you tried? Which have been successful? Imitrex and O2 Which have not? IMitrex caused rebounds and O2 is only effective dsome of the time  Explain.  

16. Do you prefer pharmaceutical or alternative treatments? Whatever works.  Period.    Explain.
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Turts on Jan 17th, 2006, 10:07pm


Dylan's Cluster Survey

1. What is your age? 30

2. What is your gender? male

3. What is your race? caucasian

4. What is your weight and height? 90kgs- 6foot

5. At what age did you first experience cluster headaches? 17

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain. neuro exams

7. How long have you been suffering?  13yrs

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?  sinus headache, migraine, sinusitus,

9. Which side of your head do your headaches occur?  
left, however one cycle rotated between sides

10. Are you an episodic or chronic sufferer?  
episodic

11. If episodic, what is the pattern and duration of your cycles?  
increased- 6yrs, 2yrs, 1yrs, 6mthly since

12. During an episode, how many headaches do you have per day?  
6

13. If you are a chronic sufferer, how many headaches do you have per day?  

14. Which preventative treatments have you tried? Which have been successful? Which have not? Explain.
prednisone, lithium, sandomigran, verapamil
All had bad side effects bar verapamil

15. Which abortive treatments have you tried? Which have been successful? Which have not? Explain.
imigran, imigran nasal spray, o2

16. Do you prefer pharmaceutical or alternative treatments? Explain.
pharm- I believe in science.
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Jezebel on Jan 20th, 2006, 11:17am
Dylan - What a great project, good luck on going through all this info... I admire you greatly for taking it on!

1. What is your age?
 
32

2. What is your gender?

  F

3. What is your race?

 Cauc.

4. What is your weight and height?

 5'6"/130

5. At what age did you first experience cluster headaches?

 11 or 12

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain.

  My father had them from his teens until his mid/late-50's. He was diagnosed sometime before they stopped at Jefferson Hosp. Headache Center in Phila. He sent me off there a bit later and they diagnosed me too.

7. How long have you been suffering?  
 
  20/21 yrs

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?  

   As a kid I was accused of faking and behavioral issues by school nurses, but luckily my pops aws able to recognize what was probably going on.

9. Which side of your head do your headaches occur?  
   
  Early on there were a few left side ones, but by my mid teens they went right and stayed there.
10. Are you an episodic or chronic sufferer?  

   Episodic

11. If episodic, what is the pattern and duration of your cycles?  

  3-4 months (except right now - I'm at 5 1/2 months and counting the seconds) beginning late summer early fall.

12. During an episode, how many headaches do you have per day?  
 
  from 3- 11

13. If you are a chronic sufferer, how many headaches do you have per day?

   N/A  

14. Which preventative treatments have you tried? Which have been successful? Which have not? Explain.

Was on Depakote 500ER for a while but it was useless. Higher dosages did awful things to me. I take melatonin 9mg regularly but can't see an appreciable difference, but it's nice to help sleep sometimes.

15. Which abortive treatments have you tried? Which have been successful? Which have not? Explain.
 
O2 is the only abortive that always helps. Currently on a Zomig trial, but didn't help at 5mg or 10mg. Also trying Zyprexa at 2.5mg and 5mg, but don't see much difference there either.

16. Do you prefer pharmaceutical or alternative treatments? Explain.

 If they think it will work, and THEY DON'T HAVE TO STICK A NEEDLE IN ME, I'll try just about anything!
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Jezebel on Jan 20th, 2006, 11:20am
oh yeah - forgot i tried vorapamil too... might have worked, but who could tell under the full body rash froom scalp to balls of feet -WOO HOO!
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by boybath on Jan 25th, 2006, 7:13am
1. What is your age? 36

2. What is your gender? m

3. What is your race? white British

4. What is your weight and height? 6ft 12 stone

5. At what age did you first experience cluster headaches? 27

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain.   Saw an ENT consultant and he suggested seeing a neurologist since I did nt have sinusitus but he suspected CH

7. How long have you been suffering? 10 years  

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?  Sinusitus for 7 years

9. Which side of your head do your headaches occur?  R but have occaisionally swapped

10. Are you an episodic or chronic sufferer?  ECH

11. If episodic, what is the pattern and duration of your cycles?  summer and Xmas for 2 months

12. During an episode, how many headaches do you have per day? 4 to 7

13. If you are a chronic sufferer, how many headaches do you have per day?  
14. Which preventative treatments have you tried? most
Which have been successful?none since they seems too dangerous for side effects
Which have not?  Ergot Alcholoid - halucinated loss of blood suplly to fingers (best described as crapped my pants will NEVER try that again)....  Indomethicin didnt work... dont use preventatives any more



15. Which abortive treatments have you tried? Which have been successful? Which have not? Explain.
Oral triptains ...... didnt work took me from a kip 6 to afull on headbanging wall kip10 didnt try again am not keen to try injectables since orals were so bad
O2  .......... This is my saviour and works 95 % of time in 10 mins
the odd joint allows me to get 6 hours about once a week  sleep when in cycle


16. Do you prefer pharmaceutical or alternative treatments? Explain.

O2 and alternative Ie odd joint would try RSA seeds if the current treatments stopped working.  Most of what Ive seen it seems the standard treatments work for a bit then you have to up the dose.  Similar to illegal drug abuse and the side effects seem just as bad as well  
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Dylan on Jan 25th, 2006, 9:19pm
Just a little update on my progress.  My overall paper will consist of an introduction, two body sections (conventional treatments for cluster headaches/alternative treatments for cluster headaches), and a conclusion.  So far I have completed the intro and first body; conventional medical treatments, and right now I am working on the second body section; alternative treatments. (And it is already nearly 30 pages long!!! :o).  

I am having a little trouble finding good sources for alternative treatments so any suggestions would be greatly appreciated.  

Also, I just got over a bad batch of cluster headaches.  Thankfully though, I went to a neurologist for the first time and was put on oxygen which worked very well.  

Thank you everybody who has posted their surveys so far and I will keep everybody posted on my progress.  

Dylan
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by RDubois on Jan 26th, 2006, 3:39pm
;;D [smiley=laugh.gif] Hi Dylan. I'm a fairly new guy in the group. I just came across your request for survey info from last November. Are you still interested in responses or have you finished the survey?????????

In any cae good luck. If you would like more info, I'm RDubois or RED (I used to have red hair). Now I'm old and bald.
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by RDubois on Jan 26th, 2006, 4:29pm
:) [smiley=laugh.gif]
Hi Dylan. After I wrote you a note a few minutes ago, I noticed that you have some recent responses, so I'm going to go ahead and respond to your questions in case your still interested.

1. 75

2. Male

3. Cauc

4. 200/6'

5. 55

6. Thru the internet. My daughter heard about these horrendus headaches I was having & she found a bunch of info on the net. The info 20 years ago was nowhere near as plentiful as it is today. The first time I was actually diagnosed by a Doctor, he told me to go home and buy some aspirin!!!!!!!!!!!!!

7. 20+ yaers. Since April 1985.

8. Misdiagnosed. Yes. First it was maybe the eyes, than the sinus. Had a sinus cleanout (can't remember the name but it hurt). I think that every EENT guy is just waiting for a "Clusterhead" to come in so's he can make a quick buck.

9. Left, always.

10. Episodic. I'm just getting over the latest Cluster. (I hope)

11.When I first had these headaches, the clusters came twice a year in the spring and fall and they would last 10 to 12 weeks. After 10 years the cluster diminished to once a year until 2003. This cluster, that I'm now completing, started last November 10 or 11. It was the first cluster since July 2003. This may reinforce the notion that they fade with age. This cluster has not been as bad as previous ones.

12. 3 or 4 per day (or night). I have had more at night during this cluster than previously. They use to occur more during the evening when I fell asleep in a chair while watching TV.

13. N/A

14. Quit smoking, then drinking. Both helped during cluster but it is unkown to me if they act as a preventative!! I have never taken any of the recommended drugs. When I did vist a Neurologist several years ago, the medicine prescribed was rejected by my regular Doctor as having dangerous side effects.

15. OTC stuff lkie tylenol and Sudafed. Did I read somewhere that Sudafed is not a good thing for clusters?????????? I have found that these pills are not all that effective. My headaches usually last about 30 minutes. If I take a pill, it probably takes about 30 minutes for the pill to take effect so wht's the use??

16. I don't like medicine in almost any form so I avoid it when I can.

Hope this helps. According to one of our group, I may be the oldest guy alive who has clusters. Is GOD punishing me for my sins???????????????????????????

Good Luck.

RDubois (RED)

15.
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by LadyLuv on Jan 30th, 2006, 4:31pm
Dylan

Dylan's Cluster Survey

1. What is your age?         A)    58

2. What is your gender?    A)   Female

3. What is your race?         A)    Negro

4. What is your weight and height?  A)   170 - 5'10"

5. At what age did you first experience cluster headaches?                  
                                                                          A)    age-27
6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain.       A) One smart Doctor in @ St. Lukes
 Hospital in Racine, Wisc.

7. How long have you been suffering?  A) 31yrs

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?  
A) Many times... meegrains, spinal headaches, sinus headaches

9. Which side of your head do your headaches occur?  
           A)     My headaches are always on the right side

10. Are you an episodic or chronic sufferer?  A) Chronic

11. If episodic, what is the pattern and duration of your cycles?  

12. During an episode, how many headaches do you have per day?  

13. If you are a chronic sufferer, how many headaches do you have per day?  A)3-4 on adverage

14. Which preventative treatments have you tried? Which have been successful? Which have n ot? Explain.
A) Kudzu, Verapamil are preventive I have tried - I felt that each of them helped for a while, but only for a while.

15. Which abortive treatments have you tried? Which have been successful? Which have not? Explain. -
A) Imetrix Nasal Spray, pills, injections, 0/2, Nerve Blocks, ice pack to the head... the Imetrix injections works fastest: the nasal spray and pills work, but take so much longer: o/2 only works if I can get to it when I first get hit (which is usually out of the question,because 70% of my hits usually occur between 2-5am and by the time I awake, I'm already @ a 8-10: Nerve Blocks are out of the question, it is a horrible feeling, or like of a feeling from the neck up.

16. Do you prefer pharmaceutical or alternative treatments? Explain. A) I would always chose alternative treatments over drugs if I had a choice, but so far with CH's I don't have a choice. I can't function when I have a headache, if I can't function I can work, If I can't work, well you understand...

Peace & Blessing


[/u][u]
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Julia_Goolia on Feb 6th, 2006, 12:58pm
1. What is your age? 21

2. What is your gender? female

3. What is your race? caucasion

4. What is your weight and height? 120 5'7

5. At what age did you first experience cluster headaches? 18

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain. Well, I thought I had a tumor or something wrong with my head but fortunately my family doctor knew a little about cluster headaches so he diagnosed me and filled me in ... thankfully ... no brain tumor!

7. How long have you been suffering?  4 years

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?  No fortunately

9. Which side of your head do your headaches occur?  right side

10. Are you an episodic or chronic sufferer? episodic THANK JESUS!!!

11. If episodic, what is the pattern and duration of your cycles?  Usually 4 weeks out of the year around June/July. One in the morning, one at night - last about 30 minutes to an hour. But this year I had an episode in January wich was weird - turned out to be my most painful episode EVER!

12. During an episode, how many headaches do you have per day?  Varies ... 2 per day - usually around 10 am and another one graces me with it's presence around 5 am : ) Fun stuff!

13. If you are a chronic sufferer, how many headaches do you have per day?  : P

14. Which preventative treatments have you tried? Which have been successful? Which have not? Explain. I have only tried Imatrex orally wich doesn't work fast enough! I really want to try an injection method or pure oxegyn because from what I've heard, it works the quickest

15. Which abortive treatments have you tried? Which have been successful? Which have not? Explain. I put ice packs on my head, breath very deeply, cry, scream, and pull my hair : ) Doesn't help at all : P

16. Do you prefer pharmaceutical or alternative treatments? Explain. I would prefer anything that will work!!!!
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by pfunk on Feb 7th, 2006, 12:20am
1.35
2.male
3.caucasia
4. 6ft.  220 lbs
5. 7 yrs. old
6. HA specailist
7.As long as I can remember
8. Yes. Neurologist said I had classic migraine.
9.right side
10. starte episodic now chronic
11. n/a
12. n/a
13. 3-7/day
14. all that I know have failed
15. all that I know have failed
16. Have tried them all an will try everything else

Good luck to you Dylan. I hope that I' not too late to be of some help to you.

Pfunk. 8)
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by FramCire on Feb 11th, 2006, 10:54pm
1 34
2 Male
3 Caucasian
4 315lbs 5'11"
5 32
6 Diagnosed by FP.  Further research and specialists confirmed it.
7 This cycle 10 weeks, 1.5 years since 1st episode.
8 No, strangly enough.  only diagnosis.  Took a few visits to diagnose though.
9 right
10 Episodic
11 Starts around the weather change around Oct+/- 1 month... last 6-100 (and going weeks)
12 Approx 6 or so

Tried: Verapomil, O2, Maxalt MXT, Imitrex inject, Zonig nasal, other triptans in pill form, Topomax, Melatonin

16 Pharmacuetical.  My wife is in the medical field so we usually go the way of conventional medicine.


Good luck with your project.  Maybe you could post your paper and other info when you are done.  The survey results especially.  (Im sorry if this was covered, i didn't read the whole thread I just wanted to give him the info).
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by getty6438 on Feb 15th, 2006, 1:19pm

on 11/25/05 at 14:19:59, Dylan wrote:
As you all know I have been planning to post a survey for some time now and it is finally ready  ;;D.  You guys can either just post your reply's on this message board, or if you do not want to have all of the information public, you can send me a private message or e-mail your reply to dhoseas06@yahoo.com.

I am extremely thankful to everybody who completes this survey and i am looking forward to seeing the results.

Dylan

Dylan's Cluster Survey

1.      What is your age?   45

2.      What is your gender?  male

3.      What is your race?  white

4.      What is your weight and height?  6' 1"    185 lbs.

5.      At what age did you first experience cluster headaches?  20 years old

6.      How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain. Michigan Head Pain & neurological Institute

7.      How long have you been suffering? 26 year's

8.      Have you ever been misdiagnosed? If so, what were you diagnosed with?  Oh Ya!  You have a headache go home and TRY this........LOL

9.      Which side of your head do your headaches occur?   right

10.      Are you an episodic or chronic sufferer?

11.      If episodic, what is the pattern and duration of your cycles?  Best i can recall every 2 year's for 2 month's, but my last round went 6 month's could have been re-bound h/a's from the Imatrex injection's not sure about that

12.      During an episode, how many headaches do you have per day? I'v had 14 h/a's in the last 4 day's. 10 in the a.m. 4 in the p.m.

13.      If you are a chronic sufferer, how many headaches do you have per day?
14.      Which preventative treatments have you tried? Which have been successful? Which have not? Explain. Dont recall all of them, oxygen, verapamil, antihistamines, steroid's no luck with any of them

15.      Which abortive treatments have you tried? Which have been successful? Which have not? Explain. Imatrex injection's. But this time i'v been haveing good luck with the relpax 40 mg. been cutting them in half and quarters

16.      Do you prefer pharmaceutical or alternative treatments? Explain.
pharmaceutical,

Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by RuneWitch on Feb 27th, 2006, 2:53pm

on 11/25/05 at 14:19:59, Dylan wrote:
As you all know I have been planning to post a survey for some time now and it is finally ready  ;;D.  You guys can either just post your reply's on this message board, or if you do not want to have all of the information public, you can send me a private message or e-mail your reply to dhoseas06@yahoo.com.

I am extremely thankful to everybody who completes this survey and i am looking forward to seeing the results.

Dylan

Dylan's Cluster Survey

1.      What is your age? 68

2.      What is your gender? Female

3.      What is your race?  Caucasian

4.      What is your weight and height? 5'6"  160 lbs

5.      At what age did you first experience cluster headaches? 18

6.      How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain.  At age 40, found a doctor who suffered with CH himself, so he recognized the symptoms.

7.      How long have you been suffering? 50 years

8.      Have you ever been misdiagnosed? If so, what were you diagnosed with? Oh, yeah - sinus HA, migraine HA, allergy HA, stress HA, (and the one that caused me to scream obscenities at a doctor) hypochondria

9.      Which side of your head do your headaches occur? right

10.      Are you an episodic or chronic sufferer? episodic

11.      If episodic, what is the pattern and duration of your cycles? one to three cycles a year with a duration of 6 to 14 weeks.

12.      During an episode, how many headaches do you have per day? first and last 2or 3 weeks of the episode there are one per day, middle of episode 2 a day

13.      If you are a chronic sufferer, how many headaches do you have per day? n/a

14.      Which preventative treatments have you tried? Which have been successful? Which have not? Explain. tried everything they could come up with but without success until a posting on this website 5 years ago.  Took that posting to my doctor and demanded to be allowed to try Amitriptyline and Atenolol - it works for me.

15.      Which abortive treatments have you tried? Which have been successful? Which have not? Explain.  Tried  O2, water, many other drugs - only steroids have worked

16.      Do you prefer pharmaceutical or alternative treatments? Explain.  Would prefer alternative, but so far, only pharmaceutical has worked.
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Dylan on Mar 7th, 2006, 9:05pm
I am now officially closing this survey. ;;D  I have received a ton of excellent information and testimonials that I have now used all over my paper.  I would like to thank everyone who has taken the time to respond to my survey.  Without the willingness of everyone to share their information, this project would not be nearly as meaningful.  

As I promised when i started this project, I will try and post the final paper when it is finished.  Instead of my estimated 20 or so pages, right now it is over 36.  Everyone should expect it in around a month or so when the final revisions are in (and spring break is over  ;)).  
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by outofcommission on Mar 7th, 2006, 9:15pm
1. 29 yo

2. male

3. white

4. 6' 185 lbs

5. 11 or 12 yo

6. my last cycle i was at my mothers house she found an
artical in the columbus dispatch about cluster headaches. these symtoms and mine were allike.

7. 18 yrs?

8. yes. toothache. sinus infection. stress

9. right

10. episodic

11.maybe 3 to 6 months in duration and of for 3 to 5 years. each new cycle gets worse.

12.mutlipal

13. na

14. i have noticed that caffine sometimes helps but to much makes them worse. go figure. sometime a hot shower on the head helps. it seems that things i try work once or twice only. i have also tried bowing my nose real hard that makes it worse.

15. same as 14. a hot cup of coffee works. if i keep drinking coffee they come back harder. once i took a horse pill that was suppose to thin my blood, calm my brain and relax my capularies. sounds good, didn't do a damn thing.

16. i can't say i trust pharmacutical companies. i think if they could offer temporary relief with out curing the problem they would. hey if your not sick your not going to buy pills. i would like to know more about herbal treatments or change in diet maybe.


hope that helped you dylan. good luck on your research.
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Luchie on Mar 20th, 2006, 6:42pm
1. What is your age? Turning 36

2. What is your gender? F

3. What is your race? Caucasian

4. What is your weight and height? 170cm 70kg ish

5. At what age did you first experience cluster headaches? Late teens

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain.

Went to the Drs about something else and mentioned it, he diagnosed me there and then, I can't tell you the relief, hearing that it was an actual thing.

7. How long have you been suffering?  since late teens.

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?
Stress headaches, didnt know(couldnt care less either).  

9. Which side of your head do your headaches occur?  Both, but not at the same time.

10. Are you an episodic or chronic sufferer?  
Episodic.

11. If episodic, what is the pattern and duration of your cycles?
1-4 months and then Pf like i dont have it at all, i cant rememberhow long, but long enough for me to forget about them.

12. During an episode, how many headaches do you have per day?  
from 5 to continuous.

13. If you are a chronic sufferer, how many headaches do you have per day?  
14. Which preventative treatments have you tried? Which have been successful? Which have not? Explain.

15. Which abortive treatments have you tried? Which have been successful? Which have not? Explain.
Havent tried yet, got sumatrin, (something like that) early days.

16. Do you prefer pharmaceutical or alternative treatments? Explain.[font=Verdana][/font][/i][/flash][flash=200,200][i]
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by Neekwa on Mar 30th, 2006, 11:24am
1. What is your age? 28

2. What is your gender? M

3. What is your race? Caucasian

4. What is your weight and height? 160 / 6'1

5. At what age did you first experience cluster headaches? 24

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain.  Dr's visit

7. How long have you been suffering?  4 yrs.

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?  No

9. Which side of your head do your headaches occur?  Right side

10. Are you an episodic or chronic sufferer?  Chronic, as in just about one a day on average.

11. If episodic, what is the pattern and duration of your cycles?  -

12. During an episode, how many headaches do you have per day?  -

13. If you are a chronic sufferer, how many headaches do you have per day?  1 to 4

14. Which preventative treatments have you tried? Which have been successful? Which have not? Explain.

Imitrex (nasal), CalanSR tablets,...and oh yeah 'head-on' the headache stick that you apply directly to your forehead  ::)

15. Which abortive treatments have you tried? Which have been successful? Which have not? Explain.

Neither has been even remotley succesful

16. Do you prefer pharmaceutical or alternative treatments? Explain.

I just want some oxygen to try  :(
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by flame-n-skull on Apr 1st, 2006, 1:17pm
1. What is your age? 31

2. What is your gender? Male

3. What is your race? Black

4. What is your weight and height? 5'-7" 165lbs.

5. At what age did you first experience cluster headaches? 20 years old

6. How did you come to realize that the headaches that you experience are cluster headaches and not some other condition? Explain. Tryed self med. for 9mo. went to doc. was diagnosed after two hours of details of what lead me to his office. He' treated lots of migraines for years in his practice I was his first Cluster case

7. How long have you been suffering?  11 years

8. Have you ever been misdiagnosed? If so, what were you diagnosed with?  Yes:    Depression: Conversation.

9. Which side of your head do your headaches occur? Left only

10. Are you an episodic or chronic sufferer? Chronic

11. If episodic, what is the pattern and duration of your cycles?  

12. During an episode, how many headaches do you have per day?  

13. If you are a chronic sufferer, how many headaches do you have per day?  3 to 12

14. Which preventative treatments have you tried? Which have been successful? Which have not? Explain. Non worked all failed one way or another. Stoped dope-n bout four years ago. staydol n/s was my last prescription rebounds help me to quit all together. well I do self medicate lot cheaper than doc's & prescripts. Han'nt seen the inside of ER since, few close calls, I manage well 8)...........

15. Which abortive treatments have you tried? Which have been successful? Which have not? Explain. Yoga I've incorporated a breathing where I can hold my breath untill I almost pass out, works better than any drug its quit refreshing. Works 75% of the time coworkers see me gasping for air/holding my breath & they know what time it is for a brotha.

16. Do you prefer pharmaceutical or alternative treatments? Explain. (Alternative for sure)Herbals My research shows me we (C/H'ers) are super sincitive to whats in our food something poisions our blood stream (food) we'er gonna have to find a herbal cure, it's out there I'll let you'll know when I find it HOLLA Playa'z
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by scottadavis on Apr 4th, 2006, 12:41pm
1. I am 38 on the 26th

2. I am a male

3. Caucasion

4. I am 6'1" and around 210

5. Migraines started at 30 - Turned into clusters about three years ago.

6. I used to have regular migraines, you know the typical one shot deal. Now when I get "them",  they usually start in spring or autumn and as soon as the sun starts to go down. Weather fronts always bring on the demon! The last two weeks it has been right around 5:00PM and throughout the night.

7. Since my 30's

8. Yes, my primary first diagnosed it as sinititus or sinus infection and then he thought it was TMJ.

9. Always the same - exclusively on the right side

10.  I get the attacks and they can range from three days to 3 weeks.  Two sometimes three per day. But always after 4 or 5PM. It seems like the sun sets and my beast begins!

11. Pattern is around 4PM to 5PM every day during the cycle and will keep repeating every couple of hours if I don't get rid of it completely. I feel I am going mad, lack of sleep.

12.  Anywhere from 2 to 4 per day with one real big whopper, the tension never really goes away! It all just depends

13.  SAA

14. I have tried all the over the counter stuff and nothing works.  The only thing that has worked has been Imitrex at 100mg or better. Sinus medicine makes it worse.

The best self treatment I have done has been this:

Take the Imitrex at the first sign of anything and try to keep it down, it always seems to know when I take Imitrex and I become nausiated and sick

Try to lay down and relax all muscles and try not to get caught up in the eradic pacing and fetal curl up position.

A hot washtowel placed over the nose/eyes area seems to help a lot. Try breathing through the moist towel, I find this helps a lot to calm me down and moisten my nasal cavity. I don't know why this helps but it does.

If I make it to the collapse on the bathroom floor stage in the middle of the night, I turn on a hot shower and let it run over my back and forehead for about 10-15 minutes. Sometimes you can aim the water down and sit down in the shower and just let it rain down on your head. For some reason that releives the pain drastically, enough for the Imitrex to start working and the hot water relieves the tension, helps you fall back asleep. That works for me about 50% of the time.

15. I now avoid all alcohol, cheeses and stuff I know that triggers it. I have tried the gel-on-tongue tablet a while back but it didn't work at well as Imitex.

16. I would prefer alternative treatments if it didn't mean going to 7 different specialists. For now I'll stick to my pharaceutical treatments. Imitrex has been the only sure fire medicine that stops it before it takes control.

I am down to my last Imitrex. I have been fighting the last two on my own. If another comes today I think I will take my last Imitrex and hope this episode is about over. It's been two straight weeks already! Argg :-[
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by bigbarn888 on Apr 5th, 2006, 9:42pm
Hi Dylan,
I am running a clinic out of Draper Utah, Oxygen therapy Chambers.  do you think that the cluster headache people would be interested in coming out and getting in the chamber for help with headaches.  Thank you

Barney
Title: Re: Dylan's SP Survey PLEASE RESPOND!!
Post by bigbarn888 on Apr 5th, 2006, 9:44pm
OXYGEN THERAPY AVAILABLE IN DRAPER UTAH.
bigbarn888@msn.com

Let me know if you would like to schedule and come out to use the unit.

Barney


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