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Topic: An oldie but goodie - Sansert (Read 3471 times) |
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Gator
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An oldie but goodie - Sansert
« on: Apr 24th, 2006, 8:43pm » |
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aka Methysergide. I should receive my order on Wednesday. I was wondering if anyone here still remembered what effects/side effects they experienced? I've read all the drug website info, but wanted to get the real deal from the people who have been there done that.
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unsolved1
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Re: An oldie but goodie - Sansert
« Reply #1 on: Apr 25th, 2006, 12:56am » |
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I didn't think you could legally buy Sansert anymore in the USA. It would probably be have to come from a Canadian pharmacy.
Dr. Diamond recently considered putting me on this again, but was afraid that if it didn't work, I would still use the Trex. She didn't want me to mix the two.
I tried it years ago. To me it felt just like a "micro-dot" hit of LSD (Acid). Same thing !! Each small tablet was equal to about 1/3 of a hit of good, clean Acid. The first day I took it I was WIRED!! (I was prescribed 3 a day. I think they were 2mg apiece) The second day wasn't quite as intense. After the 3rd day I felt normal again. (Like I wasn't 'tripping'). Too bad it didn't work then. No difference in the headache pattern.
We gave up on it after a couple-few months. 
Hope you have better luck than I did !
PF Wishes
UNsolved
If you've never taken this before, You should start it when you could take a few days off (if necessary). At least the first day. It can cause hallucinogenic effects. Take it as prescribed. It's Acid !
PS. Check out this page if you haven't already.
http://www.fop191.org/community/lsd.shtml
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| « Last Edit: Apr 25th, 2006, 1:03am by unsolved1 » |
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Skyhawk5
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Re: An oldie but goodie - Sansert
« Reply #2 on: Apr 25th, 2006, 1:42am » |
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I used Sansert back in 1989 & 90, I was chronic then and it may have swithed me to Episodic. Also seemed to help the cycle in general. The only side effect I recall is it was just a little hard on the stomach sometimes.
Curious to know if it's still a yellow pill? PFnow. DonS
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| « Last Edit: Apr 25th, 2006, 1:44am by Skyhawk5 » |
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MJ
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Re: An oldie but goodie - Sansert
« Reply #3 on: Apr 25th, 2006, 2:45am » |
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Gator
I have about half a bottle of 200 2mg sansert here in front of me that was stashed away in the med cabinet for some reason. Maybe it was sentimental being one of the last prescribed drugs I had for CH.
I remember having big hopes this would work for me. It did not. I certainly hope it works for you.
The prescript was from 1992 4 times a day.
The attached warning says there must be a drug free period of 3-4 weeks after each 6 months course of treatment. Take with food.
I think I used it for about 2 months before I gave up on it. I dont remember having side effects or other noticeable issues.
I do remember reading the warnings of gangrene possibilities due to decreased blood flows in the extremities as well as extensive other warnings.
Be carefull and good luck.
Anyone know if 14 year old Sansert is stiil good. Does it age like a good whiskey. 
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BobG
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Re: An oldie but goodie - Sansert
« Reply #4 on: Apr 25th, 2006, 3:18am » |
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I took Sansert many years ago. Had no side affects at all. It didn't stop the attacks but did reduce the number from 2 or 3 a night to 1 and the level of each attack from Kip 8-9 to 4-5.
And like MJ said there was a warning about a 3-4 week pause every 6 months. (or your liver would fall out or something like that).
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lionsound
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Re: An oldie but goodie - Sansert
« Reply #5 on: Apr 25th, 2006, 6:54am » |
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Gator,
I think Jimi has taken it. (I could be totally wrong) ask him.
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Brew
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Re: An oldie but goodie - Sansert
« Reply #6 on: Apr 25th, 2006, 8:53am » |
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on Apr 25th, 2006, 3:18am, BobG wrote:I took Sansert many years ago. Had no side affects at all. It didn't stop the attacks but did reduce the number from 2 or 3 a night to 1 and the level of each attack from Kip 8-9 to 4-5.
And like MJ said there was a warning about a 3-4 week pause every 6 months. (or your liver would fall out or something like that). |
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It's actually fibrosis of the heart or kidneys (I don't remember which), but what's an organ or two between friends? 
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Bob P
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Re: An oldie but goodie - Sansert
« Reply #7 on: Apr 25th, 2006, 9:49am » |
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I took it once, years ago, near the end of a cycle. 1st dose made me feel like I was on the down elevator all day so I quit taking it. Cycle ended a couple of days later. No subsequent doctors would prescribe it.
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Lizzie2
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Re: An oldie but goodie - Sansert
« Reply #8 on: Apr 25th, 2006, 2:15pm » |
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Never took that, but I took methergine which is essentially the same thing, except still on the US market. Sansert is available by compounding pharmacist - is that where you're getting it?
I had no side effects from the methergine whatsoever. When I got to the 6 month mark, I tapered off. Started up a month later, but it didn't work as well... So I tapered back off it and that was that... It did help me during the first 6 months, however. I didn't have CH at that point, though...
I recently posted about methergine on Teri's site, but she deleted the post and made one to the poster about methergine causing gangrene for her friend and about how dangerous the meds are...no knowledgeable doc would prescribe it, etc. I understand that it has some horrific side effects, but it depends a lot on your pre-existing state. Anyone with Raynaud's Disease or Raynaud's phenomenon should not take sansert or methergine. You can NOT use DHE or possibly even triptans while taking these meds - be sure to check with your doc and pharmacist on that. Sansert is a very strong vasoconstrictor, and adding further vasoconstrictors to it generally is a bad thing.... which can lead to the side effects....
Gangrene would be a very very rare side effect to these drugs, but is also on the list of things that can happen with ergot poisoning and overdose. It's pulmonary and renal fibrosis that the meds cause...demanding the break at 6 months... There's a lengthy list of side effects, but most seem to occur with prolonged use or to people with certain other existing conditions which they may not have taken into consideration before starting the med.
I didn't experience any SE's to the methergine, however...
Just my .02
Hugz and best of luck,
Carrie 
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Brew
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Re: An oldie but goodie - Sansert
« Reply #9 on: Apr 25th, 2006, 2:22pm » |
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My understanding of methergine is that the primary use is for post-partum mothers, still in the hospital, to reduce the amount of bleeding right after childbirth.
When I took the methysergide (Sansert), I remember feeling like I was tripping for the first day or so, and it caused some major league stomach upset. After the break-in period, however, it was a great preventative.
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D_Robinson
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Re: An oldie but goodie - Sansert
« Reply #10 on: Apr 25th, 2006, 3:08pm » |
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Take it over 6 months it will start to scar internal organs. that is its major side effect. I used to take it and well never worked that great. The best CH med for ever had been the zomig. All these preventatives have really just been money down the toliet. The sansert was back in my hey lets have one of those 9 hour head fuck bouts and see how much pain Dave can endure days. The biggest thing I remmeber was being worn out the first two days on the stuff and having to taper off of it in fear of rebounding.
David
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Gator
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Re: An oldie but goodie - Sansert
« Reply #11 on: Apr 25th, 2006, 9:35pm » |
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Thanks everyone. Sansert IS discontinued in the US, but a compounding pharmacy here in the US can still make Methysergide (the generic chemical name for sansert), which is where i am getting it.
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Sean_C
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Re: An oldie but goodie - Sansert
« Reply #12 on: Apr 25th, 2006, 10:06pm » |
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Mike is there a link I can use for that medication on where to get it? Sancert was the only med that busted my cycle, I loved that stuff.
Thanks for the info.
Sean...............................
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Lizzie2
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Re: An oldie but goodie - Sansert
« Reply #13 on: Apr 25th, 2006, 10:29pm » |
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Sean,
There are compounding pharmacists all over the United States, and likely there is one near you. You do need a doctor to write a prescription for it. Then you just have to take it or mail it to compounding pharmacist, depending on location. Try looking in your yellow pages to see if one's nearby!
Carrie
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Gator
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Re: An oldie but goodie - Sansert
« Reply #14 on: Apr 25th, 2006, 10:34pm » |
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Hey Sean. The pharmacy where I am getting mine is the Aetna RX Home Delivery "Specialty Pharmacy," but any REAL pharmacy (one that compounds meds) should be able to make it for you. Call around to the local pharmacies in your area and ask them if they are a compounding pharmacy and then if they are, ask them if they will compound Methysergide if you bring in a script from your doc for it.
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Dietrich
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Re: An oldie but goodie - Sansert
« Reply #15 on: Apr 27th, 2006, 11:47am » |
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I just joined this site, mostly to add some dated but hopefully helpful information. I suffered from clusters for about 20 years, from 1979 to 1997. In the early years, all of the neurologists I went to did not know much about the headaches and put me through a variety of treatments, prendiscne, oxygen, painkillers, sandsert, etc, none of which worked. Around 1995, my father saw my experience first hand one of the headaches and got me in to see the head of neurology at Washington University, Dr. Landau. Dr. Landau was very knowledgeable though he admitted, while doctors in the area knew the headaches were "chemical" headaches, they did not know exactly why they happened. He thoroughly went through my history and prescribed sandsert. I told him I had taken it before up to the highest recommended dosage. He said he was prescribing a much higher dosage. Within 48 hours the headaches almost completely subsided (they usually lasted everyday for a month or so). During my next bout, I took the sandsert right away and they went away again in 48 hours not to return during that bout. Later, Dr. Landau told me I would "outgrow" them as his studies indicated the clusters hit mostly males and that the headaches for males mostly disappeared around 40. He was right in my case. I have not had them for almost 10 years. Hope that helps someone. I would not wish a cluster on my worst enemy. I still remember the pain. I also recall the sandsert pills were quite expensive, but in my case worth it.
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Gator
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Re: An oldie but goodie - Sansert
« Reply #16 on: May 1st, 2006, 5:35am » |
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Well, the Methysergide finally came in. It's in bright red and blue 2mg capsules and I am to take 3 doses per day. At the advice of someone who has taken it before, I am ramping up every four days instead of starting out with the full 3 doses.
I took the first dose Saturday. About an hour after taking it I felt a little drowsy/woozy for about 10 minutes. After that I had a kind of strong heartbeat for a few minutes and that was it. Beast beat me like a red-headed stepchild Saturday with back to back to back hits.
Sunday's dose produced no effect at all. Got hit 6 times.
As for today, so far I am still awake at 4:30 in the damned morning after having attacks at 1:30 and again at 3:00.
I am SOOOOO glad oxygen works for me and I am REALLY glad I got that clustermasx. I can take nice full deep breaths and it seems to work much faster than with the mask I had before.
Oh well. It's a new day and the grand experiment continues...
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| « Last Edit: May 1st, 2006, 5:37am by Gator » |
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clarence
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Re: An oldie but goodie - Sansert
« Reply #17 on: May 2nd, 2006, 8:33am » |
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It didn't work for me.
What it did do...after a week I was in a haze, and so flighty that I couldn't remember how to eject the CD from my computer. After I discontinued use immediately. I hated the way it made me feel.
The neuro asked the other day if I wanted to try it again. I said no.
Casey
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Re: An oldie but goodie - Sansert
« Reply #18 on: May 3rd, 2006, 2:44am » |
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Houston, we have a problem.
Day 3 came and went with no change in the number of hits. I started to notice a little swelling of my ankles. They swell up now and then so I didn't think much of it. Increased fluid intake to see if that would help.
Day 4 - upped dose to 4mg. No change in the frequency or severity of attacks. The swelling has spread to feet and shins. The skin on my shins has turned red (looks like I have a sunburn) and is painful to the touch. Feet are not cold. Capillary refill is still good - when I press on my toe nails, the skin underneath goes white and then turns back to pink immediately upon release.
Going to discontinue the med and see if the swelling clears up. Also going to report this to the neuro to see what he says.
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zuesthedog
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Re: An oldie but goodie - Sansert
« Reply #19 on: May 3rd, 2006, 10:33am » |
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I took it a couple of years ago,till they discontiune it.Mydr. had me go in for heart and kinnedy tests every 6 months. As far as daily side affects it made me real moody[angry,sad, depressed.]. Did not like it and it didn,t seem to help with the clusters at all. Good luck
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Re: An oldie but goodie - Sansert
« Reply #20 on: May 9th, 2006, 4:50pm » |
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Well, I called the doctor's office and they agree that I should wait until the swelling and redness clears up and give it one more try. My skin has returned to its normal color and the swelling is almost gone. Should be starting over in a day or so. If the swelling and redness returns, then scratch yet another med from the list.
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Re: An oldie but goodie - Sansert
« Reply #21 on: May 15th, 2006, 6:48pm » |
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Okay, I started back on the Methysergide yesterday. Starting the ramp up just as I did previously, going up 2mg every 4th day, so all the conditions are the same as when I had to stop it before. As before, after 24 hours, no change in the ch.
Onward and upward!
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Re: An oldie but goodie - Sansert
« Reply #22 on: May 18th, 2006, 5:24pm » |
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Scratch another med. Day 3 saw my legs swelling up again, just like last time. Day 4 brought the red, sunburned looking skin. This time it extended down onto my feet and up towards my knees. My legs were so swollen and sore to the touch that it was painful to lie down in bed last night. Playing with the grand daughter last night was misery, because everytime she bumped into my legs I would cry out in pain. She's used to being rough and tumble with me. Poor thing got upset because she hurt Pawpaw. Nothing will break your heart like a 2 1/2 year old saying she's sorry.
It didn't effect the ch, but then, I never got up to a full dose, either. This is so damned depressing. I guess I was a fool to get my hopes up.
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Re: An oldie but goodie - Sansert
« Reply #23 on: May 18th, 2006, 5:48pm » |
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Only a fool if you don't try, Mike, just as the only stupid question is the one that is never asked.
I'm sorry this was a bust for you, you so deserve to get a freaking break.
So....anything else on the list to try?
Never give up, never give in. Never Quit!! NEVER!
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Re: An oldie but goodie - Sansert
« Reply #24 on: May 18th, 2006, 5:50pm » |
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Gator - Ask you doc if he/she might consider prescribing Methergine as a substitute. It wasn't quite as effective for me, but it did work to an extent.
Never, ever, ever, ever give up.
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