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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Thank you for this site!! I'm not alone!
        
(Message started by: Furby on Jul 8^th, 2004, 10:51pm)

Title: Thank you for this site!! I'm not alone!
Post by Furby on Jul 8^th, 2004, 10:51pm

I am new and recently have been diagnosed with clusters by a GP, neuro and ENT. I have had it for a year and tried all sorts of meds. Prednisone, gabapentine, 02, veripamil, remerone, imitrex, zomig, etc..... (Can't remember all of them). I have not had one day pf. And for the last 3 weeks I have been having 10 to 12 attacks a day. The shadows have also been worse. I start santem on the weekend. Hope that works.

I would like to thank you all for the site and knowing there are other people has made me feel not so alone. :)

Furby

Title: Re: Thank you for this site!! I'm not alone!
Post by miapet on Jul 8^th, 2004, 11:07pm

Sorry you're here, but glad you found the board.
*positive light and energy*
miapet

Title: Re: Thank you for this site!! I'm not alone!
Post by eyes_afire on Jul 8^th, 2004, 11:14pm

Hi Furby and welcome. Perhaps you should give Indomethacin a try if you haven't already. With doctor supervision of course. Don't have much to lose and it's dirt cheap.

Best wishes,

--- Steve

Title: Re: Thank you for this site!! I'm not alone!
Post by TxBasslady on Jul 8^th, 2004, 11:14pm

Good luck with the new medication.

Hope you get some much needed relief.....real soon!

Welcome to Clusterville!

PF vibes,

Jean

Title: Re: Thank you for this site!! I'm not alone!
Post by Margi on Jul 12^th, 2004, 10:16am

Jewls, I sent you a private message - I hope you're doing ok? I agree with Steve - that many attacks in a day are, while not unheard of, not normal for clusters. Could it be CPH instead (Chronic Paroxysmal Hemicrania)? Cluster like pain but much shorter attacks. Indomethacin is almost 100% effective in relieving CPH. Do you have a good neuro that you can talk to about this?

Title: Re: Thank you for this site!! I'm not alone!
Post by gaz_b on Jul 12^th, 2004, 10:37am

i`ve just got here to, nice to know we`re not alone in our pain is`nt it, these chaps seem like a good bunch to x :D

Title: Re: Thank you for this site!! I'm not alone!
Post by Furby on Jul 13^th, 2004, 7:43pm

Thank you all for the info on the CPH. My doctors have already ruled that out.

I have started my sansert on Saturday, hoping it works. Nothing seems to be happening so far. And my attacks are happening 8 - 10 times a day now.

Jewls

Title: Re: Thank you for this site!! I'm not alone!
Post by writer on Jul 15^th, 2004, 9:39pm

So sorry you are having all those horrible attacks.

Sorry to to hear that your doc has prescribed Sansert. I took it for a short time, and it did prevent the headaches, but the side effects were too horrible for me to continue taking it Q: did you know the stuff is an extremely close chemical relative of LSD and seldom prescribed any more?

If you are well enough to read this Message Board, you'll see there are lots of other alternatives that might help other than that vicious Sansert.

Anyway, many good thoughts and prayers. Everyone connected with this site knows the horror of the pain, and everyone wants it to end for you.

Love,

Writer

Title: Re: Thank you for this site!! I'm not alone!
Post by 911please on Jul 15^th, 2004, 9:47pm

Hi jewls, welcome and sorry you had to come here.
Re sansert, my gp put me on that two years ago and the stuff had me bleeding internally in 24 hours. Just a side affect he said... no thanks I said..

hoping for pfd's to all

Doug

BTW you didn't mention O= Oxygen. I got on it and found that 15lpm straight up for ten minutes ends the bout and relieves the pain for a while. They say a non rebreather mask is required but I don't have one and can't locate one so I suck the O right outa the tube.
The mask they give you is useless unless it is a non rebreather type.

Title: Re: Thank you for this site!! I'm not alone!
Post by UN_SOLVED on Jul 16^th, 2004, 7:16am

on 07/15/04 at 21:39:51, writer wrote:

Q: did you know the stuff is an extremely close chemical relative of LSD and seldom prescribed any more?

Sansert is 'structurally similar' to LSD, I agree. I was prescribed 1 (2mg) pill three times a day. You may get the LSD effects for the first 24 hours, but after that...any weird feeling or side effects should go away. You doc or pharmasists should ask you to stay at home for the first day or so and have another adult around until you know how the drug will affect you.

BTW, Sansert did nothing for my CH.

Unsolved

Title: Re: Thank you for this site!! I'm not alone!
Post by bluesunshine on Jul 17^th, 2004, 2:27am

Hi furby,

Just a question : do you know how your docs ruled CPH out?
Tell us about your pain.

ASK questions to the docs. It is you head girl, and if they don't give you relief, change the docs! 8-10 times a day, it must be unbearable.

May be let's give it a try with indomethacin.

Furby, for yourself, make sure you have the right diagnosis

remember, many meds you mentionned helped in a way one or another CH sufferer. Read a lot on this site too.

Get a CT scan and MRI too.( you should have done this in the first place)

blue

Title: Re: Thank you for this site!! I'm not alone!
Post by Jewls on Jul 18^th, 2004, 8:19am

Hi Blue

I have had 2 CT scans and an MRI. I see my neuro and GP this week, and I plan on mentioning the CP headachs again. Will let you know how it goes.

Jewls(Furby)

Title: Re: Thank you for this site!! I'm not alone!
Post by bluesunshine on Jul 18^th, 2004, 8:59am

Hi furby,

When you read on this site (cluster traits, cluster quiz, etc..), do you recognize yourself? If you are, Welcome abord furby!. You will surely found out a good treatment for those HA.

Keep us in touch

blue

Title: Re: Thank you for this site!! I'm not alone!
Post by Jewls on Jul 20^th, 2004, 2:56am

I saw the doc today and asked him why he ruled out cph. He already tried me on the drug a while back and it did nothing.

I did take the quiz and yes it did remind me of myself. Also when I read some of the posts, it's like someone was writing down what I do and say during an attack.

The doc took me off sansert already. I was having too many bad side effects, and it wasn't stopping the attacks. It did help with the shadows until about Friday, and did slow down the attacks, was not having as many in the day. He is now trying me on the imitrex shots. I had tried the imitrex pills, but they did nothing. Probably because it takes too long to get into the system. Will let you know how the shots work

Jewls :-/

Title: Re: Thank you for this site!! I'm not alone!
Post by ShannonJ on Jul 21^st, 2004, 11:58am

I am so sorry that you have to suffer that many times a day. When mine are real bad it's only 5-6. I couldn't imagine anymore than that. My only suggestions for you are to read everything you can on this site. It sucks so bad that people have to go through this horrible pain but it is nice to find people that understand you and can help. You're in my prayers and I wish you the best of luck.
Shannon

Title: Re: Thank you for this site!! I'm not alone!
Post by Charlie on Jul 21^st, 2004, 3:57pm

Welcome furby:

Sorry another has to deal with this horror but it's a good place to come. We all say the same thing when we find this place. We cant believe how many there are and that we aren't insane.

There are some non medical things that sometimes help:

Try some very vigorous exercise when getting hit or cold water. Anything that affects circulation has a chance. Here is a technique that I used:

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