Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Page Index Toggle Pages: 1
Send Topic Print
Newbie needs help please!!!! (Read 2672 times)
Saladin27
CH.com Newbie
*
Offline




Posts: 20
Montreal, Canada
Gender: male
Newbie needs help please!!!!
May 18th, 2012 at 11:56pm
 
First, I'd like to mention that I think you people are freakin ANGELS!!!! I've never met any of you and you've helped me more in 4-5 days than any doctor in 15 years.

I'll start with a shorter post for those who dont want to read too much.

I have an appointment in 11 long days (I'm i a cycle now  Smiley ) with a Neuro and I need good, scholarly and referenced articles about CH to make sure he doesn't overlook CH when he diagnoses me. I also need articles about Oxygen.

Thank you.
Back to top
  

Patience and fortitude conquer all things
 
IP Logged
 
Saladin27
CH.com Newbie
*
Offline




Posts: 20
Montreal, Canada
Gender: male
Re: Newbie needs help please!!!!
Reply #1 - May 19th, 2012 at 12:50am
 
Now for a little more info.......

I'm 26. Had them since age 11 or 12. [EDIT: upon recalculation with my parents it turns out my first cycle was at the age of 16 not 11 ] Remission 1-2 years. cycles two weeks long (ya I realize that makes me lucky. Im so sorry for those who get them more often) I only realized they were CH a few days ago thanks to the wikipedia page about CH. I was very touched when I read all the info online on various sites because it was eerie how these sites seemed to predict ALL my symptoms and even my social behavior in a very detailed way. I'm convinced I have CH and  I cant  be that stupid ( I have an MEng degree in structural engineering)

In the past five days here is what I have done.

Saw my family doctor, gave me no meds, gave me a referral to a Neuro (system is a little funny in canada). Best appointment I could find is in 2 months.

Went to a walk-in clinic. Doctor gave me Diclofenac potassium (which is a slightly stronger Advil) --This is like taking candy. He also gave me something useful. Its called Axert (Almotriptan malate) tablets. Which is very similar to Imitrex (sumotriptan). I know many people think tablets are useless because they're too slow but they are the best thing that has happened to me. Now I dont have to go through a 4-hour beating not knowing when the monster will leave. At least I know I will only go through 4; 45minute torture sessions per day. This stuff works 100% for me, first thing better than 0% since I was 12 years old. [Edit: 16 years old not 12]

I also went to an emergency room. I read the forums, you guys already know what happened. I wasn't taken seriously, they kept calling them migraines. One nurse told me "oh I know what your going through I get migraines too". I insisted they consider cluster headaches and they gave me an appointment to see a Neurologist on May 29. They can do better, If they knew the pain they would have given me an appointment next day. It has been done.

Thanks to this very forum, I tried sticking my head in freezing cold water (thats one good thing about montreal and its frigid weather, tap water can be sooo beautifully cold) This is the second best thing that has happened to me (Axert being the first). This takes me from a stumbling, fumbling kip9 down to a kip4 or 5. I think it may be aborting the attack altogether but I'm not sure. I need to experiment a little more.

I have a question about Axert/Imitrex (let's assume they are the same, I realize they may be very different, but if you do a little research you will see they have the same mechanism). First of all, I'm getting side effects that are pretty alarming. Faster heart rate, out of breath, tingly feeling in my forehead and extremities, nausea, smaller dual-sided headaches which are fun compared to CH, neck pain/stiffness, I'm also spacey and lost and cant focus. Do many people get this? Wtvr, still waaaaayyyy better than my attacks.

Second, and more importantly I feel like they are affecting my cycle altogether and preventing it from finishing. I used to get a break between headaches. Now I'm in a very repetitive circle of drugs and headaches. Get a headache -take half a pill - 5 or 6 hours pass - meds wear off - get a headache - take a half a pill - 5or 6 hours ......etc, etc . Its been 2 weeks now. My cycle is supposed to be over. Is the Axert doing this? Is this just me, maybe my cycles are getting longer now that I'm older. I cant even really tell If I'm at the peak of the cycle because I dont dare stopping the Axert. What if now the beast is waiting to come back with a vengeance?
Back to top
« Last Edit: May 20th, 2012 at 12:51am by Saladin27 »  

Patience and fortitude conquer all things
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3708
Bremerton, WA
Gender: male
Re: Newbie needs help please!!!!
Reply #2 - May 19th, 2012 at 1:23am
 
As a rule, we try to stay away from diagnosis...  That takes a board certified neurologist experienced in diagnosing and treating cluster headache sufferers.

That said, the diagnostic process is differential in nature.  What that means is your neurologist will use neuroimaging and other diagnostic tests to eliminate other possible causes of your headaches...  What's left are the primary headaches called TACs or trigeminal autonamic cephalalgias, migraines, and several other cats & dogs primary headaches.

If there's anything to take to your appointment it's the terminology used to describe your symptoms...  Try to be specific.  Engineers are good at being specific...

Be able to describe the type of pain, frequency - how many attacks over a 24 hour period including if they wake you from sleep or hit randomly during the day,
duration in minutes.  Tell him the pain location, above, below, behind or beside the eye, left side, right side - both sides - other symptoms such as watering eye running nose and bulging eyelid same side as the pain if it's only on one side.

There is a recognized standard of care treatment for cluster headache...  Bob Johnson will likely chime in with some excellent info on that for you.

If the diagnosis is cluster headache, take what ever medications the neurologist prescribes but ask for two things...  A prescription for oxygen therapy at 15 liters/minute with a non-rebreathing oxygen mask if it wasn't already prescribed and the lab test for 25-Hydroxyvitamin D.

I've been collecting user comments and experiences using the anti-inflammatory regimen with 10,000 IU/day vitamin D3 since December of 2010. 

The gist of the data collected to date is this...  Most of us suffer needlessly from this disorder due to a vitamin D3 deficiency. 

If the neurologist refuses to prescribe this lab test, tell him "Humor me...  I'm paying for this consult and I think I'm vitamin D3 deficient."

When you get the results back on your serum 25(OH)D concentration, it will likely be less than 30 ng/mL.  We've had CH'ers with active CH test as high as 55 ng/mL.

Moreover, CH'ers who have gone pain free while using this regimen and then had this lab test, have all had results come back between 60 - 110 ng/mL.

So far the raw efficacy of this regimen is 75% and climbing...  Over 125 CH'ers hear at CH.com and at ClusterBusters now have a greatly impoved quality of life thanks to this CH preventing regimen...  that costs 20 cents a day USD.

You can read their comments and mine at the following link: 

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

This thread has been viewed over 45,000 times since I started it in December of 2010 and it's presently being viewed 200 times a day.

Take care and please keep us posted...

V/R, Batch

Back to top
« Last Edit: May 19th, 2012 at 1:35am by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
IP Logged
 
Saladin27
CH.com Newbie
*
Offline




Posts: 20
Montreal, Canada
Gender: male
Re: Newbie needs help please!!!!
Reply #3 - May 19th, 2012 at 1:41am
 
Oooh I have already writen down my symptoms in a detailed way 3 times.

1. Just my symptoms
2. My symptoms compared to classic CH symptoms. (In a table, categorized, high medium and low correlation)
3. My symptoms compared to classic Migraine symptoms.

Seriously, I drew graphs of my pain vs. time.

Also, I'm in Canada. I DIDNT pay for anything. Doctors are concerned with keeping cost down over here. They are veeerrry reluctant to order expensive tests.


My problem is that I'M not a doctor. He wont care much for what I think I have. Which is understandable, he has his professional responsibilities. I need good, scholarly, referenced articles to show him in case he's not too familiar with CH.

Thank you sincerely for your reply. I WILL follow your advice on the vitamin D3.
Back to top
« Last Edit: May 19th, 2012 at 1:45am by Saladin27 »  

Patience and fortitude conquer all things
 
IP Logged
 
Bob Johnson
CH.com Alumnus
***
Offline


"Only the educated are
free." -Epictetus


Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: Newbie needs help please!!!!
Reply #4 - May 19th, 2012 at 10:15am
 
Were I you I'd start over again! Find a headache specialist. Research has show that even neurologists, who should be skilled in this area, have remarkably little training/skill. Given your location, hard to believe you would have trouble locating someone.
---
LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.


2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
=======
The PDF file, below, outlines the latest evaluations of Cluster meds and, while a nice tool, it doesn't give any doc the SKILLS of a good diagnostician or sophistication in using these treatments.

Educating yourself is essential, however, both for your subjective comfort and having a foot up on how to care for yourselfl.
===



Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
=====

A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
------

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Search under "cluster headache"
============
Explore the buttons, left, starting with the OUCH site.
========
And since you are obviously curious and motivated, find one of these two books:

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")



HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
===========

You mention taking 1/2 pill and the attack redeveloping.
Stop playing with dosing! You don't know enough yet to do this. With this class of meds you take the full dose at the first sign of an attack: delay reduces the effectiveness of the med.




Back to top
« Last Edit: May 19th, 2012 at 10:27am by Bob Johnson »  
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (96 KB | 16 )

Bob Johnson
 
IP Logged
 
Saladin27
CH.com Newbie
*
Offline




Posts: 20
Montreal, Canada
Gender: male
Re: Newbie needs help please!!!!
Reply #5 - May 19th, 2012 at 4:06pm
 
I looked up the doctors from the ouch website. There are two.

Dr. Ivan Woods has a 2 year waiting list.

Montreal Migraine Clinic ( I have yet to find out.Nobody answers the phone even during business hours. They take messages and I've left one. Nobody answered me. Their message even states "for emergencies go to an ER")

As for me playing with the dosing you're right its dangerous. However I have a limit of two pills/day. I get more than two HA/day. What would you do? Play with the dosing or take on the beast? I get kip9s. (Never passed out FROM the pain, often passed out after the pain, contemplated suicide, banged head, pulled hair out etc.....) At least I don't EXCEED the dosage right?

I have been sent great articles from members of this site. THANK YOU EVERYONE!!

I still want to know other's experience with Imitrex/Axert. Rebound headaches?? Prolonged cycles?? Side effects?? 
Back to top
« Last Edit: May 19th, 2012 at 4:07pm by Saladin27 »  

Patience and fortitude conquer all things
 
IP Logged
 
Bob Johnson
CH.com Alumnus
***
Offline


"Only the educated are
free." -Epictetus


Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: Newbie needs help please!!!!
Reply #6 - May 19th, 2012 at 6:53pm
 
Rebound headaches. "Rebound Headaches--A Review", Au. John S. Warner, M.D., in HEADACHE QUARTERLY, 10:3(1999). (There is some confusion on the board about the meaning of "rebound". There appears to be an emerging consensus in the medical literature to define "rebound" as a headache which is caused by the overuse of any medication used to abort a headache or relieve pain. "Recurrence" [of a headache] is being used to refer to the redevelopment of an attack when its "normal" duration is longer than the useful life of the medication which has been taken. That is, the medication effectiveness is reducing before the headache has come to an end; the pain redevelops.)
=================================================================
Sumatriptan has a hard initial punch and relatively short effective life--a combination which works well for most Cluster attacks. However, some people, whose Clusters have a longer life, find that the med is wearing down even as the pain continues. One can understand how this sequence comes into one's thinking: Attack, Imitrex injection, pain continues, it's a rebound cluster which has developed from the Imitrex. In fact, this is a recurrence of the attack, not a rebound.

This is one of the reasons that several other triptans were developed having less initial punch but longer effective life. While aimed at the migraine crowd, at first, a number of cluster users have found this characteristic of value to them.
=============
We regularly see comments that Sumatriptan changes the experience of CH--increasing frequency and/or intensity. What is usually missing are any data on frequency of this experience, duration of changes, source of the claim, and so on. Several years ago I searched medical literature for some specifics on this experience and could only find the two abstracts (below). In January, 2011 I searched for more current reports and could not find anything in the previous 10-years.

My conclusion is: the absence of later data suggests that there is little experience stimulating reports/study and that this is not an important problem. The last point is reinforced by the observation that in the few reported events, that the changes in headache reversed when Sumatriptan was dropped.

As with other medical topics, it's important that we qualify our "truth" claims with parameters/limits which don't distort real life experience.

It's not much help to people to warn them off using a good treatment with a silent implication that some side effect is widespread, enduring, even dangerous. We are always, with every medical treatment, struggling to balance benefit vs. risk. As we expect our physicians to fairly present the pros & cons of a treatment/procedure to us, we should, given our limited knowledge & skills, try to do the same.
==================================

Headache. 2000 Jan;40(1):41-4.

Alteration in nature of cluster headache during subcutaneous administration of sumatriptan.
Hering-Hanit R.

Headache Unit, Department of Neurology, Meir General Hospital, Kfar Sava, and the Sackler Faculty of Medicine, Tel Aviv University, Israel.

Abstract
OBJECTIVES: To document the relationship between the 5-HT receptor agonist sumatriptan and a change in the nature of cluster headache in four cases. To relate the findings to the literature on the use of sumatriptan in both cluster headache and migraine.

BACKGROUND: Studies of the efficacy and adverse effects of long-term treatment with sumatriptan in cluster headache are limited and report conflicting findings.

METHODS: FOUR CASES ARE DESCRIBED.

RESULTS: All four patients developed a marked increase in the frequency of attacks 3 to 4 weeks after initiating treatment with the drug for the first time. Three patients also developed a change in headache character, and 2 experienced prolongation of the cluster headache period. WITHDRAWAL OF THE DRUG REDUCED THE FREQUENCY OF HEADACHES AND ELIMINATED THE NEWLY DEVELOPED TYPE OF HEADACHE.

CONCLUSIONS: Determination of the effects of long-term use of sumatriptan will result in more precise guidelines for the frequency and duration of treatment with this otherwise extremely beneficial drug.

PMID: 10759902 [PubMed -
=======================================

Headache. 2004 Jul-Aug;44(7):713-8.

Subcutaneous sumatriptan induces changes in frequency pattern in cluster headache patients.
Rossi P, Lorenzo GD, Formisano R, Buzzi MG.

Headache Centre, INI Grottaferrata, Rome, Italy.

Comment in:

Headache. 2005 Sep;45(8):1089-90.

Abstract
OBJECTIVES: To document the relationship between the use of subcutaneous (SQ) sumatriptan (sum) and a change in frequency pattern of cluster headache (CH) in six patients. To discuss the clinical and pathophysiological implications of this observation in the context of available literature.

BACKGROUND: Treatment with SQ sum may cause an increase in attack frequency of CH but data from literature are scant and controversial.

METHODS: Six CH sum-naïve patients (three episodic and three chronic according to the International Headache Society (IHS) criteria) are described.

RESULTS: ALL SIX PATIENTS had very fast relief from pain and accompanying symptoms from the drug but they developed an increase in attack frequency soon after using SQ sum. IN ALL PATIENTS, THE CH RETURNED TO ITS USUAL FREQUENCY WITHIN A FEW DAYS AFTER SQ SUM WAS WITHDRAWN OR REPLACED WITH OTHER DRUGS. Five patients were not taking any prophylactic treatment and SQ sum was the only drug prescribed to treat their headache.

CONCLUSIONS: Physicians should recognize the possibility that treatment of CH with SQ sum may be associated with an increased frequency of headache attacks.

PMID: 15209695 [PubMed
========
An effective alternative to Imitrex and has the advantage of a much lower per dose cost. Print out this abstract and discuss with your doc.
--
Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------


Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
=====
Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]
Back to top
  

Bob Johnson
 
IP Logged
 
Saladin27
CH.com Newbie
*
Offline




Posts: 20
Montreal, Canada
Gender: male
Re: Newbie needs help please!!!!
Reply #7 - May 20th, 2012 at 12:46am
 
Wow, great reply Mr.Bob Johnson. Thank you very much. I've read your post 4 times already. I continue to be amazed at the kindness of the members of this forum. Again: THIS WEBSITE HAS HELPED MORE IN THE LAST FEW DAYS THAN ANY DOCTOR IN THE LAST 10 YEARS.

New development: I believe the axert may be wearing off. Today is the first day that I experience some pain during the med's effective period of 5-6 hours. Only Kip1-2 though, mainly when I encounter my triggers (heat, skipping meals, cigarettes) This is starting to freak me out. I don't want to go back to the "dark days" when I had absolutely no weapons to fight my CH. In a way the axert has made me weak. I don't think I can do what I used to do anymore (i.e. tough through 3 hour kip9). 

One time I was caught in bumper to bumper traffic in blazing hot weather without AC and I was hit with a kip9. I managed to continue driving for 45min. Mostly 1 hand on the wheel, 1 hand on my eye/head. Staring at the floormat glancing at the road when I released the brake. I was probably 23.
Back to top
  

Patience and fortitude conquer all things
 
IP Logged
 
wimsey1
CH.com Alumnus
***
Offline


I Love CH.com!


Posts: 2457
MA
Gender: male
Re: Newbie needs help please!!!!
Reply #8 - May 21st, 2012 at 8:22am
 
I'm surprised no one's mentioned the use of O2 as an effective abortive, coupled with an energy drink. Unless I just missed it. In case it hasn't been addressed, read the link at the left. I, and so, so many others, have found O2 to be the best and primary abortive for all hits. Attacks that would last from 45 mintues to 3 hours now take 2-5 minutes to abort. But, the right flow, technique and equipment must be in play. Otherwise, O2 can be useless. Is this something you have tried? If so, how? Blessings. lance
Back to top
  
 
IP Logged
 
dv8r_dragon
CH.com Junior
**
Offline


small deeds inspire big


Posts: 25
Kansas
Gender: female
Re: Newbie needs help please!!!!
Reply #9 - May 21st, 2012 at 8:44am
 
There isnt a lot of info out there on our condition. One of the biggest issues we as CH suffers have is lack of research. Its getting better...slowly but surely. What little info we do have can be found on previous posts, and this awesome forum. At the top left of this forum is a list of helpful links to research, tips and other forums. They can tell you about CH,  diagnoses procedures, surveys...best thing to check out is O.U.C.H. I have found documents that I was able to give to my physician and my neuro to help. This of course is only helpful if the doc is helpful. You may have to travel a bit to get the right tests and treatments. Good luck to you.

Love and Gratitude! Stay PF my friends!
Back to top
  

I'm not crazy...just misunderstood
dv8rfleck 10000054945  
IP Logged
 
Saladin27
CH.com Newbie
*
Offline




Posts: 20
Montreal, Canada
Gender: male
Re: Newbie needs help please!!!!
Reply #10 - May 21st, 2012 at 5:23pm
 
Thanks for the replies Lance and dv8r_Dragon.

For the past 10 years doctors have been calling them migraines so thats what I have been researching. When I started reading about CH about 10 days ago (and I have done a LOT of reading)  I became 110% convinced that this is what I have. In my case its not ambiguous. I have ALL the symptoms (or 95% of them). Really its the description of the pain and the videos on youtube that got me.

I am aware about O2. However I have yet to be diagnosed. The members of this site have been great. I am very prepared for my appointment with the neurologist on the 29th.

CONSIDER ME HELPED!!!

I will update after the appointment shortly. Unless I'm extremely frustrated/disappointed then it may take a few days.

Another update: My cycle is losing momentum. I'm down to 2 HA/day only when I'm sleeping. Axert still pretty darn effective.
Back to top
  

Patience and fortitude conquer all things
 
IP Logged
 
Mike NZ
CH.com Hall of Famer
*****
Offline


Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
Gender: male
Re: Newbie needs help please!!!!
Reply #11 - May 22nd, 2012 at 5:05am
 
Before the appointment make notes on what you want to say, questions you want answered and what you'd like to get from the appointment. It's so easy without notes to forget something as soon as the appointment is over.
Back to top
  
 
IP Logged
 
Saladin27
CH.com Newbie
*
Offline




Posts: 20
Montreal, Canada
Gender: male
Re: Newbie needs help please!!!!
Reply #12 - May 29th, 2012 at 10:58pm
 
WOOOOHOOOOOO!!!! YES!!! NYA NYA NA NA NA!!! um huh um huh Grin Cheesy Cheesy Cheesy Tongue Smiley Wink

GUESS WHAT!! I WAS RIGHT!!! I HAVE CH!!! NEURO CONFIRMED IT !!!

Dont get me wrong I'm not have happy to have suicide headaches. But I've already had them for 10 years. What happened is that I found out that CH exists about two - three  weeks ago and today a doctor diagnosed me with it. I've never had relief from these freakin cluster bombs. NOT UNTIL NOWWWWW!!!!!!!!

ok ok so here's what happened. I went to the doctor with an arsenal of preparations. A long detailed report written by me about my symptoms and meds I've tried etc... I had a CT scan report from 5 years ago during one of my other cycles. I had articles in french and english (Quebec is bilingual) about CH, oxygen, the effect of triptans on the CH cycle etc.. 

I was lucky! He was a good one folks! He already knew what CH was and he already had other CH patients (his office is right accross the street from one of the only two OUCH recommended clinics in Montreal. what are the odds? I didnt even choose him, the ER did) Actually he even had a patient who couldnt take it anymore and decided to end his life.

That said, he wasnt too interested in any of my articles. And we didnt really spend more than 1-2 min on my report of symptoms. Didn't bother me one bit. He already has the knowledge. He did ask to take my CT Scan report and my report on symptoms cuz it was soo freakin nice and professional!!! Diagrams and all. In french.  Wink

First he asked me to describe my headaches quite briefly. Then he asked a series of questions that are straight to the point. How long is remission? ever get anything in b/w cycles? How long is cycle? etc...Then he said the magic words "Sure sounds like CH"

He gave me three prescriptions. Prednisone (I'm probably not gonna take that unless my CH is realllly affecting work in an unacceptable manner) . Imitrex nasal spray and 02 with the proper specs (10-12 LPM max 15LPM , non rebreather mask). With an address where i can get this.

One little negative point. Batch this is for you (I didnt forget your advice). When I mentioned the vitamin D3 and the blood test he made a funny face then said NO! in a firm way. Wtvr I can get that blood test from my family doctor. I didnt want to argue with a DOCTOR. It makes you go from "intelligent person" straight to "obnoxious, hard headed know-it-all" in about 2 secs flat. They dont respect internet forums as a source of knowledge. I DO THOUGH!!! Results speak for themselves. 

THANKS SOOOO MUCH TO ALL THOSE WHO HELPED ME.

I would like to add this doctor to the OUCH list. Wonder if I can do that....
Back to top
  

Patience and fortitude conquer all things
 
IP Logged
 
Skyhawk5
CH.com Alumnus
***
Offline


I love YaBB 1G - SP1!


Posts: 1320
Ypsilanti, Mi. USA
Gender: male
Re: Newbie needs help please!!!!
Reply #13 - May 30th, 2012 at 2:12am
 
Just in case you need it, check out the following link.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Don
Back to top
  

Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
Skyhawk5655  
IP Logged
 
Mike NZ
CH.com Hall of Famer
*****
Offline


Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
Gender: male
Re: Newbie needs help please!!!!
Reply #14 - May 30th, 2012 at 2:13am
 
Good to hear that the appointment was a success, although I'd hoped you didn't actually have CH but something that would easily go away with the right treatment. However you're in the right place to learn even more about CH.

I'm surprised that he didn't give you a long term preventive like verapamil, lithium or topomax as the prednisione is only a short term preventive. Maybe this is something you can take up with your GP?

For the oxygen, once you've got it there is nothing to stop you using a higher flow rate. I know that for me I can kill a CH off in about 5 min at 25lpm but at 15 it takes over twice as long. Do get one of the optimasks from this web site, it's so much better than the standard non-rebreather masks you can get.

You can make your own mind up about the vitamin D3. I just know that it seems to be working very well for me and quite a lot of other people.

Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3708
Bremerton, WA
Gender: male
Re: Newbie needs help please!!!!
Reply #15 - May 30th, 2012 at 5:44pm
 
Saladin,

Thanks for the enthusiastic feedback that you've finally been diagnosed with CH after 10 years... I know the feeling...  It took me 4 years...  It's also good to hear that your new neurologist prescribed textbook classic standards of care medications for this disorder….  Too bad he was unwilling to honor your request for the 25-Hydroxyvitmain D lab test…

Your post got me thinking so I did a little research…  I think I found a couple possible sources of your neurologist's reluctance to order the 25-Hydroxyvitmain D test for you.

It appears that Canada's government run health care and social medicine system has run into a bit of a bureaucratic cost saving snag… 

In October of 2010, it seems the provincial Ministry of Health in Ontario began mulling over a proposal from its medical advisory committee to eliminate most of the discretion doctors have in asking for the $50 vitamin D tests and have them paid by the province. 

The bureaucrats and bean counters in the medical advisory committee came to a conclusion that Ontario physicians were prescribing far too many tests for vitamin D…  i.e., the lab test for serum 25(OH)D and the provincial bill was roughly $37.5 M for the vitamin D tests performed so far that year by public medical labs…

Moreover, the province estimated that if vitamin D testing continues to grow at current rates, the expense might top $150-million by 2012, up from $38-million last year… so proposed a reduction in vitamin D testing back to 2004 levels…  roughly 30,000 a year for Ontario…

It also appears the Canadian Agency for Drugs and Technologies in Health (CADTH), who provides decision-makers with the evidence, analysis, advice, and recommendations they require to make informed decisions in health care, also decided the costs associated with vitamin D testing were growing too rapidly.  They commissioned a study report, based on a limited literature search and on personal communications with Canadian health care officials, that concluded in Feb 2011, essentially suggesting a limit on vitamin D testing.  For reference, in Quebec, the ~ $50 fees for this test conducted in private laboratories are paid for by the patient and reimbursed by medical insurance plans.

Meanwhile, the mainstream medical community views epidemiology as a weak form of evidence and remains skeptical about the dramatic claims for vitamin D because they have not been confirmed by major clinical trials, the gold standard for evaluating drugs. “The [medical] literature is replete with megavitamin therapies for this, that and the other thing which, in fact, at the end of the day, have not borne out,” Dr. Shragge, a government type observed.

So here's the conundrum…  Doctors are unwilling to prescribe the lab tests for vitamin D, i.e., 25(OH)D or 25-Hydroxyvitamin D, or treat many common disorders with vitamin D3 supplements until gold standard studies (randomized, placebo controlled, double blind), have been conducted to confirm the safety and efficacy of vitamin D3 in treating these disorders…  nor are any of them willing to sign up to lead a study on vitamin D3 as a preventative for the many disorders in which it could actually help improve the outcome…  Moreover, because too many physicians are unwilling to prescribe this lab test, too many of us will never know if we're vitamin D3 deficient…  If they did order this test and the results came back indicating a deficiency, physicians would be bound by ethics to treat this deficiency…  so they don't order the test…

Let's try to put all this in perspective…  on a cost basis…  using the cluster headache disorder as an example… 

If a neurologist prescribed the leading standards of care cluster headache medications, (Pred taper - $50, verapamil 240 mg/day X 60 days – $105, sumatriptan succinate injections 9/month X 2 months - $550, oxygen therapy for 60 days - $200), it would come to a rough order magnitude average cost of $15 a day or $900 for the average two-month cluster headache annual cycle…   You'll likely get these same medications prescribed for your next cycle and the one following that…

Meanwhile, the annual cost of the 10,000 IU/day vitamin D3, 500 mg/day calcium and cofactor minerals needed to prevent your cluster headaches comes to roughly $100. 

You do the math…  Even at 70% efficacy…  and that's a low estimate, the cost savings for the treatment of Canada's episodic cluster headache sufferers would be $6,427,000 a year. 

Here's how I arrived at that figure…  Using a CH prevalence of one tenth of one percent and a population of Canada estimated at 34,108,752 by the World Bank, that works out to 30,600 CH'ers of whom 75% are likely episodic and only half of them are being treated…  that works out to 11,475 episodic CH'ers being treated for this disorder in Canada at an annual cost of $10,327,500 Canadian Dollars… 

Treating 70% of these 11,475  episodic CH'ers with vitamin D3, calcium and the cofactors comes to $802,250/year…  Treating that same 11,475 CH'ers with the standards of care prescription medications costs $7,229,250/year…  for a difference of $6,427,000/year.

Fortunately, not all of Canada's Provincial medical care systems are run by narrow-minded bean counting bureaucrats… Fraser Health, who manages residential care facilities for the elderly folks in British Colombia, is offering free prophylactic vitamin D to residents of their residential care facilities… 

This is not a benevolent outreach by bean counting bureaucrats…  It's smart thinking by a for profit corporate leaders and mangers who finally realized an ounce of prevention is far less costly than a pound of cure…

Fraser Health’s new vitamin D protocol calls for 20,000 IU weekly dosage of vitamin D, which is an adequate, safe and effective dosage for older adults living in residential care facilities. Those with hypercalcaemia and severe renal failure will be excluded. Residents can opt out of the protocol if they do not want to participate. The protocol will be initiated by the physician within the first six weeks of a resident moving into a residential care facility. 

The vitamin D protocol will cost Fraser Health less than $20,000 per year, whereas the cost of treating a single hip fracture resulting from a fall ranges from $18,000 – $30,000. Compared to the potential benefits, the cost of providing a safe and effective dose of vitamin D is very low at less than $2.00 per month per resident.
Fraser Health is the first health authority in Canada to implement a vitamin D protocol in residential care facilities.

“The new vitamin D protocol being implemented at residential care facilities across Fraser Health is a positive step in helping our seniors stay active and independent,” said Dr. Nigel Murray, CEO of Fraser Health. “We know that seniors with fall-related injuries tend to stay in hospital twice as long as seniors hospitalized for all other reasons. This protocol will help to decrease falls and keep seniors in their own homes.”

“Based on recent analysis of the effect of vitamin D on falls, it’s estimated that vitamin D supplements can prevent between 10-25% of falls that currently happen in residential care facilities,” said Fabio Feldman, manager of seniors falls and prevention.

As your neighbors to the South, we're not too far behind you in the wonderful world of having all our healthcare being managed and provided by government socialized medicine…  That's where bean-counting bureaucrats decide what the medical treatments you get instead of a physician…

As you know, the Marxist trained community organizer occupying our Nation's most expensive public housing at 1600 Pennsylvania Av. in Washington DC and the politburo at the Capitol used fuzzy math and Chicago thug tactics to pass the unconstitutional Obamacare legislation…

In fact, our early entry into social medicine, a.k.a. Medicare, has already decided old people with CH just need to suffer rather than be treated according to the prevailing standards of care for cluster headache and other trigeminal autonomic neuralgias… 

Bureaucrats and bean-counters at the Centers for Medicare and Medicaid Services (CMS), decided that covering the cost of oxygen therapy for Medicare beneficiaries suffering from cluster headache was just too expensive so they denied coverage…

As if that wasn't enough of a health care cost savings…  the bean-counting bureaucrats have also decided to cut funding for supplemental oxygen for our Nation's 1,047,000 Medicare beneficiaries suffering from COPD… 

As you can see from the CMS  5-Year spend plan for oxygen and oxygen contents, these clever bureaucrats will have cut funding for home oxygen to 1,047,000 Medicare beneficiaries suffering from COPD from $1.7 Billion in 2009 to $51.6 Million by 2014….  That's a 97% cut in funding for home oxygen therapy…

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

It appears these bean-counting bureaucrats may be suffering from low blood oxygen content to the brain as their actuarial acumen has failed to account for an additional 3 million baby boomers joining the Medicare ranks every year…  and a good 40% of them smoked so are likely COPD inclined…

Sorry this got so long winded…  but it sure makes you think twice who you'll vote for in the next election…

Take care,

V/R, Batch

Back to top
« Last Edit: May 30th, 2012 at 7:05pm by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
IP Logged
 
RichardN
CH.com Hall of Famer
*****
Offline




Posts: 963
x1|Crossville|USA,Tn
Gender: male
Re: Newbie needs help please!!!!
Reply #16 - May 31st, 2012 at 10:22pm
 
Great News Saladin

  Re the 02 and mask.  The non-rebreather mask you will get from your med supply will have a 1-litre bag, with two exhalation ports (one with a valve) on the side.  You will need to modify this a bit for maximum effect . . . until you get an O2ptimask with the big green 3 litre bag, designed for clusterheads and a huge improvement over the 1 litre bag we all used before it was available.  So:
ng
    Pull the one little rubber valve off the exhale port and then tape up both sides . . . remember, you need 100% 02.  Crank your regulator up to 15 lpm and allow the bag to fill . . . hold tight to your face and inhale .. . . crack the bottom of the mask slightly for the exhales (since you've taped the exhale ports) and repeat.  I used to take about a 4-5 second inhale (you're breathing the 02 in the bag, plus the 15 lpm the reg is delivering) and about a 3 second exhale (I think the 1 litre bag will fill in about 3 1/2 seconds at 15 lpm).  I tended to squeeze the bag on the inhales, NOT to force 02 into my lungs, but to know when the bag is flat.   IMPORTANT! . . . the little green strap on the mask is good for hanging your mask on the tank or for use while driving if you get hit on the road, but NEVER, EVER USE AT NIGHT!   If you're hit at night, wake, put on the mask, huff til it peaks and begins to "whoosh" away, it's too easy to lay back down with the mask on and finish him off.  If you have the strap on and fall asleep, you'll wake strangling for air when the tank runs out . . . NOT fun.  If you make sure and hold the mask to your face and drift off, the mask will fall away and you'll just wake with an empty tank.

  You're gonna love the 02 . . . so glad you cleared the 02 hurdle.

     Be Safe   PFDANs


        Richard
Back to top
  

I can live with the beast as long as I don't have to "dance" with the bastard.
lastchantsranch  
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!