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Topic: Sansert - no Cluster for 7 1/2 weeks (Read 302 times) |
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MarkHW
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Sansert - no Cluster for 7 1/2 weeks
« on: Sep 20th, 2002, 12:12pm » |
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Hey... sorry I haven't been around for awhile. Things have been very busy.
I wanted to update everyone on how things are going with Sansert.
For history - I'm chronic and was having 3 clusters a day (with no breaks except when taking prednisone).
I was on prednisone for way too long and started having major side effects. I have been on a list of meds that could fill a notebook.
7 1/2 weeks ago my neuro started me on Sansert. 2 mg - 4 X per day. I started the med and by the 2nd day couldn't function at all! I left work because the walls seemed to be moving and I thought I would pass out.
I called the neuro and he told me to start decreasing the dose. I am now down to .5 mg 2 to 3 times per day.
Anything higher gives me way too many side effects. I am alternating between 2 & 3 times a day because after a couple weeks at 3 times per day the levels must get too high and I start to feel funky.
But... I have had no cluster (or migraine) in 7 1/2 weeks. I have had a couple shadows, but nothing very big and it only lasted about 1/2 hour each time.
My Neuro took a blood test and a chest X-ray to get a baseline (since Sansert can cause Kidney problems and Fibrosis of the Lungs). I go back to see him at 3 months and have to more blood work and a chest X-ray to make sure everything is ok. At 6 months I will be taken off the Sansert. I will be off of it for 2 months or until the headaches come back (whichever is longer). Then I will have another 6 months with periodic checks.
But... The good news is that I have taken no imitrex, no oxygen, nothing but Sansert for 7 1/2 weeks and have had no cluster!!!!!!
I know this isn't the drug for everyone and the side effects are a potential, but this is the longest I've gone cluster free in years and years......
Mark 
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The clusterhead formerly known as williamsmh.
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kristi
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Re: Sansert - no Cluster for 7 1/2 weeks
« Reply #1 on: Sep 23rd, 2002, 12:40pm » |
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CONGRATULATIONS MARK!
It is always wonderful to hear that someone is painfree. Hope it lasts forever and ever!
K
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eyes_afire
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Re: Sansert - no Cluster for 7 1/2 weeks
« Reply #2 on: Sep 23rd, 2002, 5:20pm » |
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That's great news Mark! I know you were having it pretty rough a while back. Good news is good to hear. I hope things keep getting better for you.
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pinksharkmark
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Re: Sansert - no Cluster for 7 1/2 weeks
« Reply #3 on: Sep 25th, 2002, 7:09pm » |
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Quote:| I started the med and by the 2nd day couldn't function at all! I left work because the walls seemed to be moving and I thought I would pass out. |
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Heh! Same thing happened to me, but at a much lower dose. I stuck with it for about a week, but had to stop because I couldn't function at all. It was like I was on a 24 hour a day high. Unfortunately, in my case it made no difference to either the frequency or the severity of my CH.
Glad to hear it is working so well for you. Hopefully your cycle will have ended by the time it is necessary to stop. I'm curious -- do the shadows seem more frequent or more severe on the days when you only dose twice a day?
pinky
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