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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Vindication
        
(Message started by: sturgida on Aug 4^th, 2004, 1:49pm)

Title: Vindication
Post by sturgida on Aug 4^th, 2004, 1:49pm

Thank ya Jesus! I have found a place that I can relate to. I can now give a name to the pain I have been feeling for years. When I came across this site last Thursday (Aug 29, 2004) I got goosebumps.

The symptoms! The testimonials! At last! My headaches always happened on the right side of my head and have been off and on since I was about 10 years old. Unlike a lot of you guys my headaches happen mostly during the day. I think looking back on it, these clusters were the reason I failed calculus in the 12th grade. I could do nothing but put my head down in class and cry.

I had not had a headache since 1998 when about three weeks ago they started up with a vengeance. I just started a new job and I know my mentor thought I was crazy when I ran out of the room pounding my skull with my fist crying "Nooooo! Nooooo!” I later apologized and he described that his cousin suffered from cluster headaches and lead me to this site and several others. Thank you Pete!

Over the years I have consulted at least three doctors about this: one said I hade sinusitis, the other said it was an allergic reaction to temperature and humidity changes and the other said she could not find anything abnormal at all. I've had family and friends tell me I was being overly dramatic describing the pain and people have even said "...just take something its only a headache." Little do they know. Armed with this information I have scheduled to see my doctor on the 12th. Are there anything I should specifically have him look for or questions I can ask him to more identify a personalized treatment for me?

Thanks for all the great information.
:)

Title: Re: Vindication
Post by floridian on Aug 4^th, 2004, 2:23pm

Quote:

I've had family and friends tell me I was being overly dramatic describing the pain and people have even said "...just take something its only a headache."

Just let us know who these people are and we will take care of them. ;) I am highly proficient in the ancient secret martial art of Llap-Goch; as a high ranking leek-belt, I can give attitude adjustments that they won't forget. http://www.ppsa.com/gif/llap01.gif

Title: Re: Vindication
Post by UN_SOLVED on Aug 4^th, 2004, 2:26pm

(1) Get a good neurologist.
(2) Read ALOT @ this site for info about meds, treatments, and experiences...etc.
(3) Be prepared when you go to your neuro.
(4) Don't be afraid to ask questions / share stories on the message boards.

Goodluck,
PF Wishes,
Unsolved

Title: Re: Vindication
Post by floridian on Aug 4^th, 2004, 2:29pm

On a more serious note, print out the cluster quiz (button to left), circle your answers, and take that to the doctor. Have you tried anything other than aspirin/tylenol/ibuprofen?

What kind of cycles do you have? Mine have always been at this time of the year (mostly July-August). My sleep always gets messed up in the weeks before the attacks - I wake up earlier and earlier feeling refreshed, no matter how late I stay up. I get semi-manic. My eye twitches before a cycle starts, and I sometimes get weird sensation in my feet & brain at the same time. Heat makes things worse, and I get heat exhaustion very easily compared to every one around me.

Title: Re: Vindication
Post by Bob_Johnson on Aug 4^th, 2004, 2:59pm

Get the second or third book:

HANDBOOK OF HEADACHE MANAGEMENT, 2nd ed., Au. Joel Saper, MD, 1999, Lippincott Williams & Wilkins. A highly condensed volume for doctors but good for "advanced" clusterheads who have a grasp of medical terminology and medications. Covers all types of headache with the section on cluster being brief. Sections on general considerations in treatment and on medications are important.

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. 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.

----------
Take a look at: WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.

Title: Thanks floridian
Post by sturgida on Aug 4^th, 2004, 5:48pm

I used to get the headaches in the winter floridian, I think that is why one doctor told me that it was temp/humidity related. But now they are back in the hottest part of the summer. My eye twitches also.

As far as a cycle don't know yet. I went for about 5 years pain-free now kaboom. Its a little before 6:00pm (EST) and I just came up off my third one today. Today was not so bad so maybe (dear Christ) I am coming to an end of this cycle. Today's headaches were nothing compared to last week's mind-erasing, white-hot pain free-for-alls. Also I get very anxious (nervous feeling) and mild nausea during my attacks.

Title: Great info Bob
Post by sturgida on Aug 4^th, 2004, 5:56pm

Thanks for the books; I definitely want to look things up. I have come to find out that you practically need to know treatments and things before you even see a doctor.

In 2001 I was diagnosed with having a mild to moderate case of colitis. Of course this took three months of painful hemorrhoids and eight doctor visits (four different physicians) before somebody decided to send me for a colonoscopy and discovered the problem. So now I can at least stir my doctor in the right direction so he won't tell me my headaches are from looking at the color orange every other Thursday! ;;D

Title: What makes a good nuerologist?
Post by sturgida on Aug 4^th, 2004, 5:57pm

Is it bedside manner? Treatments recommended. Should I go to someone another clusterhead has been to?

Title: Re: Vindication
Post by judyw on Aug 4^th, 2004, 6:16pm

Welcome Stu...good info above on your question...have you checked for referred doctors on the OUCH site and found one near you? Go by all means if you can get in soon...or keep your appointment with your Neuro and go equipped with copied information for OUCH that you feel would catch their attention...O2 information is a good start...Suggest they check out the OUCH site and Cluster Headaches. com, too...Please keep us posted and let us know how we can support you...PPP

judyw143

Title: Re: Vindication
Post by miapet on Aug 4^th, 2004, 11:40pm

Welcome . . .sorry you're here, but glad you found this place!
Read, read, read (if you can, it's hard when you're getting whacked), and know as much as possible. If you have a partner/family member/friend who can (and will) get knowlegable about CH, have them do it . . and have them advocate for you too (at least if they need to when you are getting slammed).
Oh, and read up on oxygen . . .appears to work well for a fair amount of people (as an abortive).
*positive light and energy*
miapet

Title: Re: Vindication
Post by Robert_C. on Aug 5^th, 2004, 8:04am

Welcome, welcome, welcome,

I have been around here for a week now and I've learned more then in the last 20 years. Keep reading! This place keeps me more awake then the headaches ;)

Quote:

I got goosebumps

You're lucky. My first day...I was so happy, couldn't stop crying.

Best advise: get as much info as you can before seeing the doctor. Most doctors don't like patient who self-diagnose themselves, but I'm all for Floridian's solution [smiley=hammer.gif].

Quote:

I wake up earlier and earlier feeling refreshed, no matter how late I stay up. I get semi-manic. My eye twitches before a cycle starts, and I sometimes get weird sensation in my feet & brain at the same time

I can sooooooo realte to that Floridian. But feet and brain? No difference here [smiley=smartass.gif]

Good luck sturgida.

Robert

Title: Re: Vindication
Post by Charlie on Aug 6^th, 2004, 4:05pm

Here is something to help you with the people that have no idea what you mean by 'headache."

Through the following link you will find a letter written by a fellow cluster headache sufferer that is the best of its kind to help explain that these attacks have nothing to do with what others think of when they hear the word “headache.” It’s worth copying:

uk.org/ch/note_colleagues.cfm

Here is technique that worked very well for me:

Dr. Wright’s Circulatory Technique

What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck

Charlie

Title: Re: Vindication
Post by AnthonyT on Aug 17^th, 2004, 4:16pm

It looks like you've found a home, sturgida. That's some good luck having someone else recognise clusters and steer you in the right direction! Awareness of the condition is improving a lot.

on 08/04/04 at 14:29:45, floridian wrote:

My sleep always gets messed up in the weeks before the attacks - I wake up earlier and earlier feeling refreshed, no matter how late I stay up.

Very interesting... this pattern was bothering me because I would be up in the wee hours (after 4-5 hours of sleep), unable to get back to sleep, but not wanting to go to work yet. I kept hoping it would correct itself.

I never thought of this related to the onset of an episode. And Robert_C also finds familiarity in this premature wakefulness. Do you have any clues as to how/why this might be related (for some of us)? (If so, maybe start a new thread on it).

Title: Re: Vindication
Post by Robert_C. on Aug 18^th, 2004, 11:26pm

You're right Anthony, that's exactly what I was talking about. Is it a sign that the headaches are coming or is it something that could cause the headaches to start?

Robert

Title: Re: Vindication
Post by synergy on Aug 19^th, 2004, 7:29am

Welcome to the site hun (sorry you have to be here though)!

All the advice i was going to give has already been given!

So i will just say again - Welcome and make yourself at home!!! [smiley=thumb.gif]

luv sarah xx