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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> new and need help
        
(Message started by: nlm1969 on Dec 31^st, 2004, 9:08pm)

Title: new and need help
Post by nlm1969 on Dec 31^st, 2004, 9:08pm

hi this is my first time to this site. when the doctor said i had clusters and prescribed coreg i couldnt believe it...i am a 35 year old woman and i thougt this was a man's disease.
this wasnt a headache that has kept me up for the past 3 monthes, three different doctors kept saying it was different things. all i know is there are hours my brain feels like it is exploding....i just wanna cry not run carpool at 7am and my husband thinks i should just take an asprin and get over it . the fourth doctor i seen today proscribed indomethacin which i dont even know what that is. all i know is i just want the left side of my head to stop hurting long enough for me to think clearly.
if anyone has any advice i would love to hear it, and i hope the new year brings u all relief and happiness

god bless

Title: Re: new and need help
Post by Redd715 on Dec 31^st, 2004, 9:48pm

I'd advise to take a look at the links on the left there and take the cluster quiz...not all docs are well informed and you'll get pointed in the right direction..I sure hope...for your sake it's something other than clusters...but if it is...then you have found the right place to be.

Title: Re: new and need help
Post by Grandma_Sweet_Boy on Dec 31^st, 2004, 9:50pm

It used to be believed that women did not get clusters! Wrong! That decision was likely made by a male.

Best advise I can give you is to read, read, and read some more. All of the links to the left of the message board hold a wealth of information for you.

Stick around - there will be others around as well to offer support and advise.

Aspirin won't do a thing for you if this is truly clusters. Might just as well eat jello - same bloody effect. Maybe hubby could check out the Supporters area of the board and read the rest as well.

Hope you get the answers you're looking for.

Carol

Title: Re: new and need help
Post by nlm1969 on Dec 31^st, 2004, 10:40pm

thanks so much for the advice i have been doing alot of reading and the quiz on the sight alot of the symptoms are the same as mine for clusters.i have seen four doctors and the last two have both said clusters.I go back in a week so i want to get as much info as i possibly can so i can ask about options. i cant go on this way for much longer. i have had two children both natural and never experienced any kind of pain like this sometimes i just dont think it is going to stop then it is just gone. i am afraid to sleep and too tired not too this has been going on 3 monthes with little relief.my sanity is now suffering as well i think im going nuts at times....keep thinking this can only get better, hope it does soon
thanks for all the help
nlm

Title: Re: new and need help
Post by nani on Jan 1^st, 2005, 3:38am

Welcome nlm, and sorry you're here. The advice you've been given so far is very good. When you go back to the dr, ask for something to abort the headaches (like oxygen and/or Imitrex) and for preventatives as well. Verapamil and lithium are two that work for many of us. Get all the info you can, it is your best defense. Hang in there, you're not alone. Pain free wishes to you.

Title: Re: new and need help
Post by Bob_Johnson on Jan 1^st, 2005, 11:35am

The best way to get an organized overview of clusters and treatment is either of these books. After you have a global perspective you will be in a better position to get into the details of meds, doses, etc.
--------
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.
----
Also, find a doc who has experience with headache. Large numbers of docs, even neurologists, do not know this disorder. We have lots of experience here that much time is wasted working with a doc who does not have sophisticated skill/experience.

Title: Re: new and need help
Post by snowlynxt on Jan 2^nd, 2005, 11:54am

Welcome;
Unfortunately clusters are NOT a man's thing, i have had clusters for 30 years, have found nothing to help. 02 worked for a while but the more I used the more it took til it was useless.
Its now a waiting game for me, shadows during the day, the taunting of I will be back in my mind daily.
I pray for all, no cure, just a head banging nightly ritual that we go thru.
Most doctors havent a clue, one day migraines will be cured and maybe they will start on us. Until then, hang in there, many of us are with u. ::)

Title: Re: new and need help
Post by angel-ache on Jan 2^nd, 2005, 4:17pm

Hello nlm,

I have been episode CH since 14 and just found out what I suffer from this very fall. I avoided the doctors after I went to a clinic in highschool and they perscribed ibprophen that tore up my stomach. After that I just hide in a room till the CH's finally left me alone. I finally went back to a different doctor this fall when my episodes started again after a two year break I am 27 now. They were more intense and painfull than ever. I admitted myself into the ER 4 times, and with no effect to the headached, they tried demoral. BIG mistake. Narcotics are the worst thing for CHs.
I started Verapmil, about 80mil 3-4 times a day (non time released). got a perscription of oxygen (12liters for about 20 minutes) for an abortive. took 9 mils of meletonin each night, always allowed a good night sleep I don't have any children. Everyone who suffers from CHs has their own individual cocktail of prevenitives and abortives that work for them. It is hard to explain the CH condition to others, even medical staff (the nurses still ask me if my eyesight is okay, because that can bring a headache on, or if i have been around any vapor chemicals to induce the headaches, they just don't understand that these CHs are random and selective to whom they occur to). Oh well.
Good luck, I hope that my short story has helped...
Angela

Title: Re: new and need help
Post by Kris_in_SJ on Jan 2^nd, 2005, 9:05pm

Hi,

Welcome, but so sorry you had to find us. One of the biggest myths in headache history is that women don't suffer from clusters. You are now meeting one woman who didn't ever suffer a HA until she got Clusters at the age of 41.

If you've been officially diagnosed, you need to know your treatment options The fact is, most cluster sufferers know much more about treatment than their doctors. My words of wisdom:

1. Keep a HA diary - note the time of day, intensity, duration, what helped or didn't help, etc.

2. Request a referral to a neuro who specializes in CH Syndrome (this is kind of hard to get in small communities).

3. Know your treatment options. Print out everyting of use and take it with you to your appointments. The following link is one I took to my GP, after many disappointing neuro visits. He has it stapled to the inside of my chart. The magic combo of Prednisone/Verapamil and Imitrex injects saved me during my last cycle.

4. Keep posting. Let us know how you're doing and what other advice you might need.

http://www.future-drugs.com/admin/articlefile/ERN020304.PDF

Many Hugs and Good Wishes. PM any of us if you need further help.

Kris

Title: Re: new and need help
Post by amct15 on Jan 3^rd, 2005, 8:07am

Welcome nlm,

Sorry to hear your pain. From what i've read, Indomethacin does nothing for clusters. It does, however, work well in treating Paroxysmal Hemicrania, which can have similar symptoms to CH. The main difference from what I understand is that a PH attack is much shorter than a CH attack. It sounds like your HA's are lasting longer than would be indicative of paroxysmal hemicrania. If, by chance, the Indomethacin relieves the pain and HA's for you, you may not have CH's.
It's true that men get CH's more than woman, probably at about a 5 to 1 ratio, but if you spend a little time reading these message boards you'll see that there are many women who suffer from this as much as men do.
I've had a similar situation with my wife and trying to get her to understand. If your husband read some of the posts on this board and the supporters board, I would hope he would have a greater understanding of what you're going through.
Keep posting your thoughts, everyone is here to help. I'm relatively new to the site myself, but it's a regular stop for me now, there's a lot of good information and advice from folks here.

Andrew

Title: Re: new and need help
Post by snook on Jan 3^rd, 2005, 1:57pm

;) :) Well your getting great advice and with the info on this site you will get more . Stay close there is always someone here to help and listen when your in need. You HAVE TO INTRODUCE YOU HUSBAND TO THIS SITE!!!!!!! Have him read what all these brave people go through, he'll change his tune about taking an aspiran. im the wife of a ch it takes time understanding, imformation, to help you get through this beast . Im sorry that your a ch with the right meds, doctor and support at home it will help alittle. And like I said before were always here....!!!!!!! My prays are with you,,, and you family which you are GOING TO NEED FOR SUPPORT. Snook

Title: Re: new and need help
Post by cray on Jan 3^rd, 2005, 5:51pm

Anyone wondering what they,re taking,check out ;www.mims.com;. Gotta go- thunderstorms outside Cray