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Topic: Went to see the Neuro today (Read 286 times) |
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Frank
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I have had clusters for 14-15 years... never saw a Neuro until today. Before I went, I wrote up a two page history... including symptoms... headache log for the past two weeks... current meds... what works... what doesn't work, etc. After a half hour of additional questions, answers, and tests... we both agreed that I really do have clusters.
As presnisolone has worked in the past to kill a cycle, the Neuro agreed that it would be good to try again this time (I am already taking verapamil which isn't working). So I am on a 7-day prednisolone schedule. I hated it last time... extreme fatigue... every joint in my body felt broken... I could hardly move... but it killed the beast for two years (or else it was a coincidence). The side effects hit after dat 4-5, but were a minor annoyance compared to the daily CH attacks.
The Neuro also prescribed Periactin (aka: cyprohept and cyproheptadine) which is an antihistamine that is a serotonin and histamine antagonist. I have never heard of it, but the Neuro explained that many doctors believe 1) that the runny stuffy nose that usually accompanies CH attacks is a symptom of CH, but 2) also believe that this type of antihistamine can prevent CH attacks by blocking the release of histamine.
I am skeptical, but WTF... I'll try anything once. Has anyone heard of this???
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| « Last Edit: Mar 3rd, 2003, 9:27pm by Frank » |
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dizzyd
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Re: Went to see the Neuro today
« Reply #1 on: Mar 4th, 2003, 4:49pm » |
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Hi Frank,
I just wanted to respond and let you know that my doctor has also prescribed periactin for me also -- as an alternative for Sansert which is my regular medicine. I am not as educated to it as you and I found your post describing the drug extremely interesting. I did not know anything about the antihistamine in the drug.
My doc told me that it acted or interchanged the same way as Sansert except it had less long-term side effects. She warned me of the "nuisance" side effects only. I must tell you that I was a zombie on the periactin, so, so tired all the time..........pretty non-functional. So I stopped taking it and am back on Sansert which I was able to get from a Canadian pharmacy.
I wish you good luck with it and hope it works and would be very interested to hear how it effects you and if you take it long-term whether it works and the tiredness wears off...............if all goes well for you, I MIGHT give it another shot as getting the Sansert is a real pain in the ass........and expensive as my insurance will not cover it as I am getting out of the US.
DizzyD
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Frank
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Re: Went to see the Neuro today
« Reply #2 on: Mar 4th, 2003, 9:55pm » |
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on Mar 4th, 2003, 4:49pm, dizzyd wrote:Hi Frank,
I just wanted to respond and let you know that my doctor has also prescribed periactin for me also -- as an alternative for Sansert which is my regular medicine. I am not as educated to it as you and I found your post describing the drug extremely interesting. I did not know anything about the antihistamine in the drug.
My doc told me that it acted or interchanged the same way as Sansert except it had less long-term side effects. She warned me of the "nuisance" side effects only. I must tell you that I was a zombie on the periactin, so, so tired all the time..........pretty non-functional. So I stopped taking it and am back on Sansert which I was able to get from a Canadian pharmacy.
I wish you good luck with it and hope it works and would be very interested to hear how it effects you and if you take it long-term whether it works and the tiredness wears off...............if all goes well for you, I MIGHT give it another shot as getting the Sansert is a real pain in the ass........and expensive as my insurance will not cover it as I am getting out of the US.
DizzyD |
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My doctor prescribed the Piriactin to be taken before bed so I don't know if it will affect me during the day... I guess time will tell.
I have started feeling the side effects from the predisolone already though. My lower back and knees are starting to ache. If it's like the last two times, my ankles, wrists, and elbows will hurt too. Wierd side effect... but that is the way prednisolone affects me. On the good side, it seems to have killed the CH attacks twice before.
I don't know what to tell you about getting Sansert cheaper in Canada. I know it is hard to get here too... the last time I had to call around to different pharmacies and the one that I ended up with still could not get it for a couple of days. Recently, I heard that they may have even stopped making it.
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dizzyd
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Re: Went to see the Neuro today
« Reply #3 on: Mar 5th, 2003, 8:08am » |
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Thanks for the response. Please please do not tell me that they stopped making Sansert in Canada............I will be up creek without a paddle if that happens...........
Hope things calm down with the predinsone..............most of these cluster headaches meds have so many side effects for so many patients........I could not take predisone or verapimill for the side effects were so bad so I know how you are feeling...........
Best of luck,
DizzyD
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