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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hi Everyone! Cluster Headaches are Very.. BAD! 
        
(Message started by: ChalZ on Oct 5^th, 2004, 12:11am)

Title: Hi Everyone! Cluster Headaches are Very.. BAD!
Post by ChalZ on Oct 5^th, 2004, 12:11am

Hi Everyone -

I am so happy and relieved that this site is around. A year after constant Drs visits (I was told I had sinusitus, grinding my teeth, etc) I was diagnosed with clusters last week. I have never experienced such unbearable pain in all my life (that includes natural childbirth!) There is nothing I have found to stop it yet (I just got put on Verpamil?) Any suggestions? I've read through the suggestions in the material, but have tried all those things..

Best-

Chalise

Title: Re: Hi Everyone! Cluster Headaches are Very.. BAD!
Post by nani on Oct 5^th, 2004, 12:23am

Welcome - and sorry you're here. :( I assume you've tried oxygen and imitrex to abort. I suggest you see the doctor who diagnosed you with a list of ALL the medications you see here. Look on the medication/treatment board, there's lots of good info there. I use Neurontin in addition to verapamil and imitrex, but it isn't used as an abortive. Keep reading...

Title: Re: Hi Everyone! Cluster Headaches are Very.. BAD!
Post by Superpain on Oct 5^th, 2004, 4:41am

Yep. It sucks big time.
Verapamil is a good start.
Prednisone works for many of us in breaking the cycle or at least giving temporary relief.
Many people think that oxygen was put here to sustain life... In all reality it was really put here to kill our headaches! :D
And when that doesn't work there's nothing like a shot of imitrex to pick your head up off the floor! ;)

Title: Re: Hi Everyone! Cluster Headaches are Very.. BAD!
Post by ChalZ on Oct 5^th, 2004, 3:18pm

Thanks for the tips ;;D I'll keep reading, but am really mad at the Drs. I've seen that have told me its sinusitus. Hopefully this recent wave will pass.. Thanks so much for your kind words!

Chalise

Title: Re: Hi Everyone! Cluster Headaches are Very.. BAD!
Post by Superpain on Oct 5^th, 2004, 4:43pm

A great majority of doctors are totally ignorant when it comes to CH. That's why it's so important to find a good headache neuro, otherwise your chances of ever recieving any effective treatment are slim to none.

Title: Re: Hi Everyone! Cluster Headaches are Very.. BAD!
Post by Charlie on Oct 5^th, 2004, 8:12pm

Sorry for all this but if you look around here you will find some good ideas for dealing with this horror.

Doctors are uncomfortable with CH. It's frustrating for them too. They really do want to help but CH is kinda rare. Look around for one that does understand and keep in touch.

Here is what worked 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: Hi Everyone! Cluster Headaches are Very.. BAD!
Post by thebbz on Oct 5^th, 2004, 9:20pm

Chalz,
So hope you find something that works for ya. We are all different so it may be tough at first. Dont let it get ya down.
BB

Title: Re: Hi Everyone! Cluster Headaches are Very.. BAD!
Post by don on Oct 5^th, 2004, 9:51pm

What dosage of verapamil?

Title: Re: Hi Everyone! Cluster Headaches are Very.. BAD!
Post by ChalZ on Oct 6^th, 2004, 1:11am

Thanks for the tip! I will try that! So far the only thing thats worked to relieve the pain (6-7) is prescription pain killers - and those take 2-4 hours to work. So, as I familiarize myself with more information, I am learning about more medications and technics to deal... Otherwise, life is good!

How long has everyone suffered?

Verp dosage is 120 mg

Chalise

Title: Re: Hi Everyone! Cluster Headaches are Very.. BAD!
Post by don on Oct 6^th, 2004, 9:27am

Quote:

Verp dosage is 120 mg

Thats pretty low. I wouldn't expect much improvement at that level.

Title: Re: Hi Everyone! Cluster Headaches are Very.. BAD!
Post by ChalZ on Oct 6^th, 2004, 12:03pm

So far, no 10s.. just 5-6s, which I can deal with... Im going to see what's around. Getting info from my Dr. is like pulling teeth since I do not fit the profile (aka Male) for Clusters.. time to get another..

Go Sox :)

Chalise

Title: Re: Hi Everyone! Cluster Headaches are Very.. BAD!
Post by Valerie on Oct 6^th, 2004, 12:14pm

I don't fit the "profile" either and that's always the first thing I hear from all the docs I've seen. I don't think they know what the profile is - My doctor said I'm only the second cluster patient she's treated.

I'm on verapamil 160mg day - it's not doing crap for me. When I've taken more it made me feel too weird - it scared me, but I already have low blood pressure.

Good luck!!

Valerie

Title: Re: Hi Everyone! Cluster Headaches are Very.. BAD!
Post by ChalZ on Oct 6^th, 2004, 2:10pm

Hi Valerie -

Thanks. When you take the verp (and this is one side-effect that I havent seen out there) does it make you feel cloudy? Like you just cant focus or are going in and out of your surroundings?

Thanks,

Chalise

Title: Re: Hi Everyone! Cluster Headaches are Very.. BAD!
Post by Valerie on Oct 6^th, 2004, 2:19pm

It makes me feel kind of high :) Almost like I'm out of my body. I don't have that feeling with the 160mg - but again it's not doing anything for my ha's either.

Both times I took the verapamil I also started taking it with the prednisone. It's kind of hard to tell which drug gave me what effect. I will do just about anything to get rid of these ha's but feeling dopey and medicated all day long isn't great either. I also wonder if it makes the cylce last longer. My cycles used to be about 2-3 weeks, once I started taking the preventatives my cycle starting lasting at least 4 weeks. I'm in week 4 now with no end in sight - it sucks! The good thing is I've been getting them every 2 years whereas I used to get them 2 times a year.

Hang in there - I've been getting these since I was 12 (I'm 36 now) and most of those years I had no good meds - Tylenol Sinus was what I used and it did nothing.

Valerie

Title: Re: Hi Everyone! Cluster Headaches are Very.. BAD!
Post by ChalZ on Oct 6^th, 2004, 7:42pm

WOW! I am sorry to hear you have been suffering for so long. Im sure you ran into the same problems I have with each ENT I've seen. (I wanted to whack the Dr after he told me I was grinding my teeth!)

Thanks for the tip about the preventatives.. I think I am going to explore imitrex with my doc on the next visit.. did you ever go off the prevents for your ha's? or are you still on them. Im wondering if Im in this for the long haul. I've only been at this for a year.

Title: Re: Hi Everyone! Cluster Headaches are Very.. BAD!
Post by cschick on Oct 6^th, 2004, 11:23pm

am I glad to see some females here! I got the same thing last year when I started getting these bleepin' things. I was told I have TMJ and that was what was causing it because I was having the jaw pain - well HELLO, I was only having pain on the right side. I am so sorry that we have to meet this way but thank God I have finally found some other females to relate with. None of my friends or family (other than my husband) understand what these freakin' things feel like. My husband is very supportive and will do anything for me to help me through. See ya on the boards!

cschick (aka Karen)

Title: Re: Hi Everyone! Cluster Headaches are Very.. BAD!
Post by EmpressJMB on Oct 7^th, 2004, 8:26am

There are alot of females here and the profile thing is why so many of us are/were misdiagnosed. Myself included. I was told it was sinus, tmj, stress, etc...for 15 years before a neuro finally made the right diagnosis. He said I was the only woman he ever treated for it (ain't I lucky?) but the symptoms were too classic to ignore. That was 12 years ago and I can tell you, treatments have come a long way since then. I can also tell you that the best info I have ever had is from this board. I also think that the support from the people here is the treatment dr's can't give you and makes all the difference in the world knowing there's others who understand what you are experiencing. PFDAN to you! Janet

Title: Re: Hi Everyone! Cluster Headaches are Very.. BAD!
Post by ChalZ on Oct 7^th, 2004, 1:27pm

Is this the females only post board now? Just kidding..
Keep your head up Karen - it is hard to explain this to people who dont have clusters (including doctors..) there is something to be said for websites like this and trading tips, etc. This board, and website are where I have found my best advice to date....

Does anyone know a neuro who treats this in Southern California? I am also willing to fly to see a Dr.

Title: Re: Hi Everyone! Cluster Headaches are Very.. BAD!
Post by yikes_another_one on Oct 7^th, 2004, 3:17pm

O.U.C.H. web site does list some doctores aroudn the country that are more familiar. I forget the link, but it's to the left..... good luck on the new doc search.

It's worth bringing in some of this info and educating the other doctors too.... wink.

Take care and best wishes.
TJ

Title: Re: Hi Everyone! Cluster Headaches are Very.. BAD!
Post by marfanoidus on Oct 8^th, 2004, 8:14am

Quote:

So far the only thing thats worked to relieve the pain (6-7) is prescription pain killers - and those take 2-4 hours to work.

For many of us, this is a trick of the beast. I've probably lived the following scenario 500 times in my life: take 4to6 Excedrins, endured CH for 1 to 2 hours, the pain goes away, and I think "I'm so glad the Excedrin worked". Now that I've experienced proper CH treatement, I see that the excedrin wasn't helping at all - the CH just left on its own.

good luck to you,
walt