Sorry to post again so soon. But the Depakote crashed and burned. SO now My neurologist wants me to go to Canada to get Sansert? I know nothing about it.
Any information from the CH Crew? What to expect?

Hang in there people!!!

 William

Like Brew said, it can be gotten under its generic name of Methysergide Maleate.  You don't have to go to Canada to get it.  Any compounding pharmacy should be able to make it.  Have your doctor write the script for the generic name.

Here's an article from the OUCH Newsletter on it:

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There are other places on the internet where you can get more detailed info such as:

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For me, it cause some serious circulation problems and pain in my lower legs, so I had to quit taking it.

Quote:


That's pretty good.  Aetna sucks.  Aetna's mail order pharmacy would only do it a month at a time and charged me $50 for one month, which worked out because I couldn't even finish the one month. 

When I lost my job to CH, I had to switch to my wife's insurance - Aetna.  In order to use Zomig Nasal Spray (which I had been using with great effectiveness), two other triptans on the primary formulary had to have been tried and ineffective.  They basically forced me to try Imitrex first.  The trex injections worked better than the Zomig, so I stuck with it.  They denied all my appeals for more trex, even with a Letter of Medical Necessity from a neurologist.  No, I tell a lie, they raised it from 6 vials a month to 12 vials a month (I get hit 3 - 5 times a day = up to 150 times a month), but refused to go higher.  Rather than giving all the BS reasons some insurance companies try to get away with about FDA limits and safety concerns, they simply said they were giving me the max my policy provided.  Did I mention Aetna sucks?

Sounds like Canada is the way to go after all. 

Sansert is the only thing I have found that works in my 15 yrs of chronic (with a couple breaks).  Got it from Canada after USA stopped. Insurance didn't cover but it was worth it anyway.

Had to stop sansert about 1.5 years ago because of fibro growth in my chest.  Been using daily DHE since, which is loosing effectiveness the last 6 months.  The Neuro doesnt  like this because it can have the same fibro growth side effect.  He wants me to talk to the surgeon for the nerve cut.  Guess I am about ready for surgery.  Not anxious though.

I have done 2 ml DHE at once which seems to do the job.  Of course my scrip is only for one per day.  I am getting 2 or 3 HA in early AM and 2 or 3 in the evening now, with just 1ml of DHE.  Only get about 1 or 2 HA in the evening using 2 ml  DHE.  Used to to get no HA with 1ml DHE

If you do the sansert, wherever you get it from, make sure you take the one month break every six months and get the CAT Scan done.  Daily DHE may be a stop gap during the break, if the sansert works for you.

Bruce

I wonder if small daily doses of LSD or shrooms would have the same fibrotic side effects?
Or if a few large doses of sansert would break a cycle?

I have been using Sansert for six months. I consider it an absolute God-send as my quality of life was non-existent before Sansert. I went two years looking for the right pharmaceutical mix, and finally settled on a combo of Verapamil and Sansert.

I have found a few things about my life on Sansert - for the most part, the side effects have not been too nasty, although Sansert can be attributed to weight gain (I work out hard 5 days a week just to maintain my weight - prior to Sansert I didn't have to work nearly as hard), and I have also found some swelling in my ankles. I haven't noticed any hallucinations or other strange events. I take it every day, morning and night.

Because it's an older drug don't expect your (Canadian) pharmacy to have it on hand. Almost every time I go to have my prescription filled they need to order some in, regardless of where I get it from. No big deal, as they usually get it in a day or two.

I will be going for some tests in regards to the fibrosis issue next week. My neuro doesn't think the one month holiday from Sansert is necessary if the tests come back clean, but I think I'll do it anyway - there's simply too much info out there suggesting a break every six months is important, and this is too important to screw around with.

Overall, I love this drug. It's given me my life back, so whatever the side effects, I can deal with it.

Best of luck with whatever course of action you all choose. Cheers