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Title: An oldie but goodie - Sansert Post by Gator on Apr 24th, 2006, 8:43pm 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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Title: Re: An oldie but goodie - Sansert Post by unsolved1 on Apr 25th, 2006, 12:56am 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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Title: Re: An oldie but goodie - Sansert Post by Skyhawk5 on Apr 25th, 2006, 1:42am 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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Title: Re: An oldie but goodie - Sansert Post by MJ on Apr 25th, 2006, 2:45am 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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Title: Re: An oldie but goodie - Sansert Post by BobG on Apr 25th, 2006, 3:18am 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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Title: Re: An oldie but goodie - Sansert Post by lionsound on Apr 25th, 2006, 6:54am Gator, I think Jimi has taken it. (I could be totally wrong) ask him. |
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Title: Re: An oldie but goodie - Sansert Post by brewcrew on Apr 25th, 2006, 8:53am on 04/25/06 at 03:18:27, BobG wrote:
It's actually fibrosis of the heart or kidneys (I don't remember which), but what's an organ or two between friends? ;;D |
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Title: Re: An oldie but goodie - Sansert Post by Bob P on Apr 25th, 2006, 9:49am 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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Title: Re: An oldie but goodie - Sansert Post by Lizzie2 on Apr 25th, 2006, 2:15pm 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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Title: Re: An oldie but goodie - Sansert Post by brewcrew on Apr 25th, 2006, 2:22pm 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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Title: Re: An oldie but goodie - Sansert Post by D_Robinson on Apr 25th, 2006, 3:08pm 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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Title: Re: An oldie but goodie - Sansert Post by Gator on Apr 25th, 2006, 9:35pm 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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Title: Re: An oldie but goodie - Sansert Post by Sean_C on Apr 25th, 2006, 10:06pm 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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Title: Re: An oldie but goodie - Sansert Post by Lizzie2 on Apr 25th, 2006, 10:29pm 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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Title: Re: An oldie but goodie - Sansert Post by Gator on Apr 25th, 2006, 10:34pm 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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Title: Re: An oldie but goodie - Sansert Post by Dietrich on Apr 27th, 2006, 11:47am 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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Title: Re: An oldie but goodie - Sansert Post by Gator on May 1st, 2006, 5:35am 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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Title: Re: An oldie but goodie - Sansert Post by clarence on May 2nd, 2006, 8:33am 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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Title: Re: An oldie but goodie - Sansert Post by Gator on May 3rd, 2006, 2:44am 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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Title: Re: An oldie but goodie - Sansert Post by zuesthedog on May 3rd, 2006, 10:33am 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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Title: Re: An oldie but goodie - Sansert Post by Gator on May 9th, 2006, 4:50pm 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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Title: Re: An oldie but goodie - Sansert Post by Gator on May 15th, 2006, 6:48pm 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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Title: Re: An oldie but goodie - Sansert Post by Gator on May 18th, 2006, 5:24pm 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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Title: Re: An oldie but goodie - Sansert Post by Redd715 on May 18th, 2006, 5:48pm 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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Title: Re: An oldie but goodie - Sansert Post by brewcrew on May 18th, 2006, 5:50pm 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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Title: Re: An oldie but goodie - Sansert Post by Gator on May 29th, 2006, 4:17am Shit! When I discontinued the Methysergide the first time, the swelling and redness went away within a week or so. This time, the swelling has somewhat gone away, but the redness has gotten worse. My right leg below the knee is a red and purpley-brownish color that wraps all the way around my leg. My left leg is not as bad, but is also getting worse instead of better. It also itches and neither hydrocortisone cream, benzocaine cream nor benadryl helps. Anyone ever have a reaction that looked like this? http://www.brightok.net/~mnjday/rightlegreaction.jpg My wife is freaking out thinking the worst, of course. She read the side effects and zeroed in on the word gangrene. She looked it up on the Mayo Clinic website and found this: Quote:
My legs, especially my right leg, definitely look badly bruised, swollen and blistered. I am going to the doctor on Tuesday. |
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Title: Re: An oldie but goodie - Sansert Post by E-Double on May 29th, 2006, 7:48am I have no experience with the med but wanted to wish you good luck on both finding relief and an answer! |
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Title: Re: An oldie but goodie - Sansert Post by lionsound on May 29th, 2006, 9:46am ummm....can you get to a doc before tomorrow? could it be cellulitis? looks like it to me if it is or anything like it and bacterial, it's nothing to be trifled with. My son had cellulitis last year and if it's not treated it can spread through the blood upward and be deadly. Treated with huge antibiotics. Our primary sent us straight to the ER without seeing him because of aggressive treatment needed. Infection of any kind should be treated ASAP. Listen to your wife! -Rori |
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Title: Re: An oldie but goodie - Sansert Post by I_can_dance on May 29th, 2006, 11:33am I agree with Rori--looks like cellulitis. You might try cold compresses for the itching. You could use a cold commercial gel pack or make your own with 1 part rubbing alcohol and 2 parts water in double layer gallon ziploc bags(2 so it doesn't leak). Once frozen, it is slushy and reusable. Make sure you place a thin clean t-shirt or pillowcase between the ice and your skin. Then use it for no more than 10-20 minutes at a time. If you don't go in today, keep your legs elevated as much as possible (above your heart). I have also seen healthcare professionals mark the borders of redness with a felt pen to monitor spreading. It may help determine if it is getting better or worse. Most of all, make sure you get into a doctor soon for evaluation and treatment. Paula |
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Title: Re: An oldie but goodie - Sansert Post by maffumatt on May 29th, 2006, 1:14pm Damn MIke, I hope you get the relief that you need and deserve soon. |
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Title: Re: An oldie but goodie - Sansert Post by BlueMeanie on May 29th, 2006, 11:25pm WOW Mike. I hope you get that checked out SOOOON. I tried Sansert years ago waaay back. Never worked for me. I sure never got anything like what you're showing. I hope everything is o.k. Check in after seeing the doc. o.k. Take care. |
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Title: Re: An oldie but goodie - Sansert Post by kcopelin on May 30th, 2006, 9:33am Gator it's Tuesday and I KNOW you're on the way to the doctor right now. Am praying that the leg heals up quickly and totally! Sansert, if I remember correctly made me dizzy enough to fall out of bed (the AF gave it to me when in-patient in their attempt to find a treatment) Needless to say, I was not happy with results. Am really sorry you had this bad of a reaction Mike. I agree with above posts never quit, never give up, never give in. PFDAN Mike, kathy |
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Title: Re: An oldie but goodie - Sansert Post by Gator on May 30th, 2006, 9:29pm Okay, I went to the doc and what I have is called Stasis Dermatitis caused by a combination of my weight and the methysergide. The Methysergide, coupled with excess fluid buildup/retention, have constricted the blood vessels causing insufficient circulation in my legs. Blood is having a hard time flowing back up the veins in my legs and is seeping into the surrounding tisues. Treatment is to elevate the legs above the heart as often as possible, a short course of a diuretic, some steroidal cream for the rash and itch and lose weight. Yet another potentially harmful side effect of being a fat body like me. On the plus side, my blood pressure even with everything going on and a shadow was only 127/72. My last cholesterol check was something like 145. I'm fairly healthy - I'm just fat. The doc is going to help me work on that. Thanks for the advice and concern, everyone. Another lesson learned the hard way. You don't graduate from the school of hard knocks - you survive it! Edited to change Static Dermatitis to Stasis Dermatitis. |
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Title: Re: An oldie but goodie - Sansert Post by E-Double on May 30th, 2006, 9:40pm Take no prisoners!!!!!! Feel good and get better! You're one of the most righteous people that I have ever met and I want ya to be around a LONG time!!! Do whatcha gotta do! Glad ya got an answer.. E |
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Title: Re: An oldie but goodie - Sansert Post by Redd715 on May 30th, 2006, 10:24pm As E-Dub said...we want you around for a long time dude. You are "god people" as they say. Seriously Mike, I'm glad it's something that reversable, and that you are otherwise healthy. Taking off a few lbs can't hurt that ticker of yours none no matter what, and as you said, it can possible help to lessen the chances of any adverce effects with meds in combination with a few excess lbs. Glad to know it wasn't gangrene or any other heinous thing. We luv ya man. Pegg |
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Title: Re: An oldie but goodie - Sansert Post by BlueMeanie on May 30th, 2006, 11:20pm Thanks for letting us know Mike. Sure glad it can be fixed. :) Now you know you have to keep those legs elevated. Looks like the wifey has to wait on you for awhile. ;) |
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Title: Re: An oldie but goodie - Sansert Post by rhino on Jul 25th, 2006, 11:26pm I am glad you got that problem solved Mike. Now what am I going to do? I have received my first prescription of Methysergide and it seems I am reading more bad than good. The neurolgist made this sound like a last ditch effort, lets drag out the big guns "Sancert",, and with each medication he drags out I get upbeat thinking this may be it. I have not started taking it yet,, It's a bottle of 75 capsules and it is expensive. Maybe I will try it tomorow, you would think somebody could find a cure for this shit. :-/ |
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