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        Cluster Headache Help and Support >> Cluster Headache Specific >> Will CH pain set you free?
        
(Message started by: Jup on Apr 23^rd, 2006, 6:08pm)

Title: Will CH pain set you free?
Post by Jup on Apr 23^rd, 2006, 6:08pm

This question has been asked to me by a friend. I answered him: "Let it be!"

I am chronic for nearly seven years and I cannot take it any longer.

Jup

Title: Re: Will CH pain set you free?
Post by Linda_Howell on Apr 23^rd, 2006, 6:38pm

Jup,

I am not sure I understand the question or your answer but I can tell you that YES you can take it.

I have been chronic since 1987 and there are many many people here who also are chronic for great lengths of time. We deal with it. We work around the pain and we enjoy our time to the fullest when we are not getting hit.

All of us here on this site will help you any way we can. Please tell us something about your headaches. What meds you have tried, etc. There is a lot of information here on the links to the left that you may not even know about or tired. Don't be so ready to assume that you help isn't available.

Please write back.

Linda

Title: Re: Will CH pain set you free?
Post by Jup on Apr 23^rd, 2006, 6:54pm

Linda, thanks for your reply. I will be back later. I must get some sleep and a day of work. It is now nearly one o'clock in the night here.
You will receive an answer of me

Jup

Title: Re: Will CH pain set you free?
Post by thomas on Apr 25^th, 2006, 9:31am

Linda, did you ever hear back from him?

Title: Re: Will CH pain set you free?
Post by Linda_Howell on Apr 25^th, 2006, 11:23am

Nope.

He must be very tired. :-[

Linda

Title: Re: Will CH pain set you free?
Post by Jup on Apr 27^th, 2006, 7:13pm

Here I am again. Excuses to Linda.
Yes I am very tired. Today I had two CH attacks. Because of using the imitrex for so long I have problems with my vains in my feet. My doctor said to quit with imitrex and go back on oxigen. But the oxigen works only for one third. I have three to four attacks per day, so this means that I have to sit out minimal two attacks per day.
I cannot take that!
Maybe?

Again it is after one o'clock, I am afraid to go to sleep. The beast is waiting for me.

That's it

Jup

Title: Re: Will CH pain set you free?
Post by Linda_Howell on Apr 27^th, 2006, 7:50pm

No excuses are necessary Jup. We all understand here,

If your oxygen is only working part-time I suggest you make the best investment of your life and get a clustermasx.
Here is the link.

http://homepages.nildram.co.uk/~tritech2/clusterx/index.html

Also there are other meds you can take besides the Triptans. Lithium, Ergotamine, Verapamil.....and on and on.

Hope this helps just a little.

Linda

Title: Free CH pain set for you. Only $25
Post by Mr. Happy on Apr 27^th, 2006, 8:13pm

Listen to Meesie Leenda. Get one of them danged Clustermasx (http://clustermasx.com). If it still doesn't work, at least you can say you gave it your absolute best shot.

Technique is everything.
RJ

Title: Re: Will CH pain set you free?
Post by BikerBob on Apr 27^th, 2006, 8:18pm

Hi Jup,

I see that you are in Vlissingen, Netherlands, where psilocybin mushrooms are LEGAL and you can buy them in many retail stores. Read http://www.clusterbusters.com .

PF wishes,
BB

Title: Re: Will CH pain set you free?
Post by superhawk2300 on Apr 27^th, 2006, 8:36pm

Hey Jup,

Sorry to hear of your suffering. I wish there was something I could do to help. If there is please let me know.

PF wishes.

Jamey

Title: Re: Will CH pain set you free?
Post by LeLimey on Apr 28^th, 2006, 4:15am

Hi Jup,
What meds have you tried? Has anything ever worked for you? There WILL be things we can suggest that WILL help you, don't give up hope okay?
As BikerBob suggests, please read the clusterbusters site, its incredible and we (people more knowledgable than me that is!) will help with any questions you have concerning ANY treatments. Those of us that can't answer in depth questions will help and support you all the way.
We're a close knit community here and we will do all we can to help fellow sufferers.
I know O2 has been mentioned.. have you ever used it? For me it is simply the best abortive there is and I can aborta hit (with a clustermasx) in 5-7 minutes.
Read all you can, ask all the questions you want, we'll help you get your quality of life back
Regards and looking forward to hearing more from you
Helen

Title: Re: Will CH pain set you free?
Post by Jup on Apr 28^th, 2006, 7:50pm

Here I am again. I used several medications, like Verapamil, Deseril (sansert I think), Sandomigran, Pizotifen, etc. The side effects were bad so I use at this moment only imitrex as I told before. I have tried the shrooms on a regular basis. When I started with the shrooms I had between 6 and 9 attacks per day (1 1/2 hr. per attack) The shrooms brought the amount back to 2 or 4 attacks per day.
I found out that I have clusters within the cluster. Weeks of 1 or 2 attacks and than weeks 3 to 4. Now I am in 3 to 4 fase.
I forgot to say that I also did the Gamma Knife, without succes.
I have to stop with Imitrex because of my heartcondition en vain problems in hands en feet. This worries me a lot.

Thanks for listening and take care

Jup

Title: Re: Will CH pain set you free?
Post by BikerBob on Apr 29^th, 2006, 12:35am

Hi again Jup,

I understand that you have to stop with Imitrex because of your heart condition and vein problems in your hands and feet.

The Imitrex interferes with (or blocks) the healing effects of shrooms.

You wrote "When I started with the shrooms I had between 6 and 9 attacks per day (1 1/2 hr. per attack) The shrooms brought the amount back to 2 or 4 attacks per day."

5 to 7 days after you stop using Imitrex, the shrooms treatments should start to work much better because the Imitrex won't be blocking the effects of the shrooms.

Use oxygen at 12 lpm through a non-rebreather mask or clustermasx to abort the attacks until the shrooms work.

There is plenty of hope and a good life ahead. You have been chronic for nearly seven years and we can probably help you end this horrible chronic condition.

Do not say you cannot take it any longer. We are here to help you get through this.

BB

Title: Re: Will CH pain set you free?
Post by LeLimey on Apr 29^th, 2006, 4:25am

Hi again Jup,
BikerBob will be able to help you alot with good advice about the shrooms, if you are taking any other meds simultaneously it can block the effects of them and there is alot of data on ways to take them etc that he can help with.
We'll support you all the way, read all you can around the board, between us all we'll help you get to grips with something that will work or work more effectively for you.
Just remember, you're not on your own with this okay? None of us are now :)
Helen

Title: Re: Will CH pain set you free?
Post by Jup on Apr 29^th, 2006, 7:49pm

Hi BikerBob and Helen, Thanks for your interest.
At the end of last year I did the shroom treatment by the book. I was med free for seven days and used the prescribed dose of shrooms. It didn’t work, so after five days I used the shrooms again. I did this four times and the results were in the beginning great, but later I was back to the ‘normal’ patterns. You don’t want to know how my life was during the four weeks without meds and only O2 which worked for one third. I also didn’t like the effects of the shrooms. I had very bad experiences.
As I said that I have to stop the Imitrex I am trying the shrooms option again. I have enough Imitrex till half of June and probably my doc will give me some more (I hope). I am planning the shrooms treatment again from the 20th of May. I have to go on a trip from the 5th till 14th of may and I promised not to change anything on my medication. I ordered the O2 so that will be no problem.
I also consider the deep brain stimulation as a serious option.
Thanks and take care,
Jup

Title: Re: Will CH pain set you free?
Post by Linda_Howell on Apr 29^th, 2006, 9:34pm

Quote:

I also consider the deep brain stimulation as a serious option.

I certainly hope you do the homework on this one before you try it. You will, won't you? Promise me. >:(

Not telling you to do or to NOT do.....anything here. Just that you start from an informed position. That's all.

Linda