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Topic: Started Sansert - No HA for 5 days (Read 589 times) |
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MarkHW
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Started Sansert - No HA for 5 days
« on: Aug 4th, 2002, 10:07am » |
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Well... I started the Sansert last week.
My Dr. started me on 2 mg 4 x / day.
The one night I took one at dinner, one at bed time, and then took one when I woke up.... I went to work and noticed the walls started moving and I started seeing colors! I was so out of it I had to go home.
Called the neuro back and he dropped me to 2 mg 2 x / day. The effects have toned down a lot.
The good thing is that I haven't had a cluster in 5 days!!!!!! This is amazing... I'm chronic and have 2-3 almost every day. The only other thing that has worked this well is 40 mg of prednasone.
I had a chest X-ray and a blood test as baselines so I can be tested from time to time to make sure I don't get fibrosis of the lungs or kidney problems. Guess I'll be on this for 6 months... off for 2 (and on prednasone during that time).
I did some research and found that Sansert is actually a man-made form of hallucenagenic mushrooms.
I also read on some web sites that if this doesn't work (since I've been on every other drug known to man) I'm almost out of options. The things mentioned were cocaine nose drops, methadone, Gamma knife, and other surgeries.
If this stops working or I started having dangereous side-effects and my neuro can't come up with anything else.... anyone have any suggestions or where I should go next - I've been to Diamond headache clinic in Chicago, but they didn't find anything either.
Mark
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The clusterhead formerly known as williamsmh.
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ChristineL
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Re: Started Sansert - No HA for 5 days
« Reply #1 on: Aug 4th, 2002, 8:51pm » |
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Mark,
Have you ever had ACTH injections? 14 years ago I was also chronic. The headache center where I was going started me on ACTH injections once a week. Can't remember back that far but I don't think it was that long when my headaches stopped. Maybe a month or so of injections. I was in remission for 14 years until 4 weeks ago. I am not sure if they even still make the damn stuff or still use it. All I know is that it worked for me at the time.
Chris
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MarkHW
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Re: Started Sansert - No HA for 5 days
« Reply #2 on: Aug 4th, 2002, 9:10pm » |
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I just looked up ACTH (adrenocroticotropin) on the internet.
It looks interesting.... I've never been on it (as far as I know).
The fact that it effects the hypothalmus is very promising... I will ask my neuro.
Thanks!
Mark
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The clusterhead formerly known as williamsmh.
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Little Deb
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Re: Started Sansert - No HA for 5 days
« Reply #3 on: Aug 4th, 2002, 11:12pm » |
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Very interesting. I'm so sorry you all are chronic. I was when I was young. Now every two years. I will ask about the Sansert. Can I work while taking it, and care for my young children????
Appreciate a response.
Thanks.
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NotH20
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Re: Started Sansert - No HA for 5 days
« Reply #4 on: Aug 5th, 2002, 9:24am » |
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Hey Mark - I'm SO glad that you have found some pain free time 
As for the alternatives you listed above, my only experience is with the cocaine drops. It's been MANY years - back in 1983 - I went to an ENT who did a cocaine packing of my nose...it was the worst thing I've ever experienced re: ch's!!!! They took pure liquid cocaine, soaked cotton with it and stuffed it up my nose. I blacked out totally - almost slipped right out of the chair. They grabbed me, took my blood pressure - I was in a total body sweat - drenched my entire clothes. My mother was in the room and she said that I was having some sort of convulsions while I was out.
Don't mean to scare you and maybe there is someone out there who can give you a positive experience. If you decide to do this - extensively research the procedure. I didn't have a headache for almost 2 days after the treatment.  Keep in mind that it's been many years since I had that done and hopefully the procedure has changed.
Good luck to you and I hope that the Sansert does a number on the beast for you....
Mia
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ChristineL
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Re: Started Sansert - No HA for 5 days
« Reply #5 on: Aug 5th, 2002, 9:28am » |
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Debbie,
Since my Ch's just started again I can't help you on Sansert. The side effects sound a bit scary to me but if nothing else works for you - hey, guess you have to try it out/
Since I have moved since my last CH's I am going to try a new Headache Center and see what they are pusing these days.
Mark,
I'll be interested to hear what your Neuro says - keep me posted.
Chris
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MarkHW
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Re: Started Sansert - No HA for 5 days
« Reply #6 on: Aug 5th, 2002, 4:15pm » |
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Well... the first day on the Sansert I was on too much and it made me really tired and I had some hallucinations (nothing big - just lights, etc.).
But... my Neuro dropped me to 2 mg 2x /day and it prett much stopped. I'm thinking of dropping to 1 mg 3 x /day if I can find a pill splitter that will work on such a little pill. Since I do get a little drowsy about 2 hours after taking the pill.
I am now almost 7 days without a cluster....
I see my neuro a week from Wednesday, so I'll keep you posted on what he says about ACTH.
THanks...Mark
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Marcos618
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Re: Started Sansert - No HA for 5 days
« Reply #7 on: Aug 5th, 2002, 4:39pm » |
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I have been on Sansert many times, never had any problems. What I use to get put on at the headache clinic I went to when I had to be taken off of the sansert for a while was Bellergal Spacetabs. I have not seen anyone talk about this drug on this web site before. Its been years since I took this drug, not sure if it is still available anymore. I also took Lithium several times per day, not sure if it was with the sansert or with the Bellergal Spacetabs.
I got to admit it is a cool name for a drug.
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MarkHW
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Re: Started Sansert - No HA for 5 days
« Reply #8 on: Aug 6th, 2002, 8:00am » |
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I took bellergal a long, long time ago.
My Dr. told me I couldn't have imitrex while on it (it was a general practicioner, though... not a neuro). The second day I had a 10+ cluster...
I had my wife (at the time) call him (I couldn't call since I was running through the house screaming) and tell him to do something before I shot myself (luckily I don't own a gun).
It was horrible! I've told my neuro to never, ever put me on something that keeps me from imitrex. But he has allowed imitrex with drugs that my primary care physician wouldn't (probably from lack of experience).
Mark
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The clusterhead formerly known as williamsmh.
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UTZ
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Re: Started Sansert - No HA for 5 days
« Reply #9 on: Aug 6th, 2002, 4:07pm » |
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Hi all
Have tried to find Sansert,Bellergal and Andrenocroticotropin in my Drugs book (australian) without any success. Does anyone know the generic names of these?
utz ??? 
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Donna
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Re: Started Sansert - No HA for 5 days
« Reply #10 on: Aug 6th, 2002, 4:24pm » |
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Please search the archives (left column) re: Sansert. There has been much much discussion on this drug and almost all of it has been bad.............don't take it without researching.
Prednisone is good but must be used with caution and not for long periods of time.
Please do your homework..........the answers are here.
Also, post your questions on the general board as many have been around here a long time and remember the discussions.
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Slammy
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Re: Started Sansert - No HA for 5 days
« Reply #11 on: Aug 6th, 2002, 4:29pm » |
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METHYSERGIDE is the generic name for Sansert.
Bellergal is a combo of belladonna - ergotamine - and phenobarbital
adrenocorticotropin is a hormone produced by the anterior pituitary gland, also goes by the name ACTH
Slammy 
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Ueli
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Re: Started Sansert - No HA for 5 days
« Reply #12 on: Aug 6th, 2002, 6:20pm » |
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UTZ, it's a bad habit of them 'mericans to give usually only a brand name, which is often something else in the rest of the world.
However, a way out of this is to look up the name in http://www.rxlist.com/, where besides the generic name tons of other information on the drug in question is available. rxlist.com even caters for bad spellers, as it uses a fuzzy search. ;D
On Methysergide (Sansert, Deseril) rxlist.com has nothing more to say, for good reason: it is a very old drug, and better stuff i available now. As Donna said, it can have lots of bad side effects. Pinky even calls it the drug from hell.  Methysergide is one of the ergot derivatives developed by Albert Hofmann about 60 years ago. But one of his other developments, LSD, also an ergot derivative, is probably more successful in fighting CH.
PFNADs
Ueli
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MarkHW
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Re: Started Sansert - No HA for 5 days
« Reply #13 on: Aug 6th, 2002, 8:37pm » |
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I did read all the things about Sansert and even searched the web for more information.
Sansert can produce fibrosis of the lungs and kidney problems.
My Dr. told me to search and read before he put me on it.
I had a chest X-RAY and a blood test before I went on it. I will be on it 6 months, off for 2, then back on. There will be chest X-RAYs and blood test each time before I go back on it.
The other problem is that at 2 mg 4x/day I started having LSD type symptoms. I am now on 1 mg 3x/day and am not having any of those problems.
But... I have now gone a week Cluster free! This is the longest I've gone (other than on 4 mg of prednisone / day) in years!!!!
Mark
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UTZ
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Re: Started Sansert - No HA for 5 days
« Reply #14 on: Aug 7th, 2002, 3:23am » |
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Thank you Slammy & Ueli
Methysergide I took at the last attack after prednisone helped me gain 18lbs in 4 weeks and my family voted me the crabbiest person in the southern hemisphere. It reduced the intensity of the bouts only. after 4 months
got desparate and had 1/4 of LSD without any noticeable effect. The attacks were reduced to bearable level that day. a further 1/4 dose the next day and it was all gone. I reduced the intake of the pills to 1 per day over two weeks. If Sansert and LSD are similar may be my dose was too low.
I am still on 1 per day (1mg)per day. If I forget I wake up with an ordinary head ache. I have been on 1 a day for 7 months now, I had better see a neuro soon.
Thanks again and PFDANs
utz ;D
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MarkHW
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Re: Started Sansert - No HA for 5 days
« Reply #15 on: Aug 9th, 2002, 3:40pm » |
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I've been on Sansert now for about 9 days and have had no clusters, not even shadows!
I'm only taking 3 mg / day. 1/2 a pill 3 times per day.
The side effects are minimal, though toward the time to take another pill I get a grumpy (which is not like me except for right before and during a cluster). I'm no longer watching the walls move... so this is a good thing!
I know about the other effects - like fibrosis, etc. I will be removed from the sansert for 2 months after being on it for 6 months... more blood work and chest x-rays will be taken.
Mark
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The clusterhead formerly known as williamsmh.
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rick
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Re: Started Sansert - No HA for 5 days
« Reply #16 on: Aug 11th, 2002, 1:34am » |
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on Aug 4th, 2002, 10:07am, williamsmh wrote: ...I haven't had a cluster in 5 days!!!!!! This is amazing...
...I did some research and found that Sansert is actually a man-made form of hallucenagenic mushrooms.
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Have you tried mushroom therapy yet?
-R
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ScottL
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Re: Started Sansert - No HA for 5 days
« Reply #17 on: Aug 11th, 2002, 11:25pm » |
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I have been on Sansert before. It seemed to work where other drugs could not. Notes:
1. I developed pain around the top of my pelvis (illiac crest) and the doc told me to quit. He suspected development of fibroids. Supposedly, they "go away" after you stop using Sansert.'
2. A relative of methergicide, maethergine has been touted by some as an effecteive preventative. Its most common use is for post-partum women to reduce uterine bleeding.
Good luck.
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rzim
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Re: Started Sansert - No HA for 5 days
« Reply #18 on: Aug 16th, 2002, 12:18pm » |
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I have been using Sansert on and off for the last three years and it seems to be the only thing that prevents the HA. Sometimes I get a feeling that its going to come on, but doesn't really develop. Sometimes just the sinus and eye pain, then it stops. Without the Sansert, they fully develop and can get real painful. I've been told no more than five consecutive months on, then 3 weeks off. Otherwise fibrosis of intestine or heart may occur. I've also been told that if the fibrosis occurs, it doesn't go away by stopping the Sansert.
As far as Sansert causing LSD like effects, I've never noticed anything and have been on as muc as three pills a day. Must say it sounds interesting. Now, I try to take as few as possible until the HA returns, then up the dosage.
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whart
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Re: Started Sansert - No HA for 5 days
« Reply #19 on: Aug 21st, 2002, 7:13pm » |
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Sansert is one of the few "blocking" type drugs i've tried that has been pretty effective for me over the years, but sometimes the headaches punch on thru (you've got to be religiously observant about maintaining your dosage). The side effects for me are most noticeable during the first few days, when i am "ramping" up and yes, i have had some visual hallucinations at the outset. Whatever works, but you do have to get off the stuff at intervals, and some people will get the same effect without the risk and nastiness of this drug.
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