Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> Medications, Treatments, Therapies 2003 >> Sansert Users
        
(Message started by: dizzyd on Feb 5^th, 2003, 9:05am)

Title: Sansert Users
Post by dizzyd on Feb 5^th, 2003, 9:05am

Hello Everyone,

Just a few questions for all of those who were using Sansert as a preventative and can no longer get it..............what are you doing instead??? What has your doctor prescribed to replace it? Have you been able to find Sansert anywhere else?? For anyone who has gotten it online from the UK or Canada, How much was it?? and can you let me know how you did it, what website you went to, etc...............

Unfortuantely, this is the only drug that has worked for me in 22 years and and I am now in the middle of a bad cluster attack and need to start taking it again (have been off since July) had some left in the house but not enough to take me through

Any and all help appreciated!!

Title: Re: Sansert Users
Post by brewcrew on Feb 9^th, 2003, 10:52am

Well, I haven't crossed that bridge yet. I have 9 doses left. Normally take 2 a day. I am going to taper the last week to one dose a day. Then I'm hoping that the Verapamil alone will keep the beast at bay. I am scheduled to call my neuro on Friday to start tapering off 60mg/day of Prednisone, so I will ask at that time. Will report back to the board on any replacement med he recommends.

Title: Re: Sansert Users
Post by dizzyd on Feb 9^th, 2003, 6:34pm

Hi,

Thanks for replying. I just went to doc last Wednesday, as she told me that there are no replacements for Sansert on the market. The closest (which isn't even close) is Periactin, which I am told has a lot of nuisance side effects. Extreme fatigue being one of them.

I finally resorted to ordering the Sansert from Myprescription.com, a Canadian pharmacy. So far so good. I haven't got the prescription yet but they accepted my order and my payment so now I am on a waiting game. Sansert has been the only medicine that even partly works that i can tolerate..........

My fingers are crossed that I get the script okay, I still wonder about the other folks, I guess they must have found something that works because I haven't read any new postings on this subject complainign of the problem or otherwise...........

Wishing the best and hoping that when you wean off you will be in remission.

Title: Re: Sansert Users
Post by ComputerGeek on Feb 10^th, 2003, 3:26pm

Hi dizzyd,

I've posted in several of the topics here about my adventures with Sansert. I think the most comprehensive was in a topic call "Sansert loopyness". Anyway, Sansert is sold as Deseril in the UK and is still being manufactured. My nuero had not heard of Deseril which suprised my so I looked it up and here is an interseting excerpt I found on the web that confirms that Sansert and Deseril are the same (if having the same compound name wasn't enough):

Certain results of the chemical modification of LSD proved valuable to medicinal research; LSD derivatives were found that were only weakly or not at all hallucinogenic, but instead exhibited other effects of LSD to an increased extent. Such an effect of LSD is its blocking effect on the neurotransmitter serotonin (referred to previously in the discussion of the pharmacological properties of LSD). As serotonin plays a role in allergic-inflammatory processes and also in the generation of migraine, a specific serotonin-blocking substance was of great significance to medicinal research. We therefore searched systematically for LSD derivatives without hallucinogenic effects, but with the highest possible activity as serotonin blockers. The first such active substance was found in bromo-LSD, which has become known in medicinal-biological research under the designation BOL-148. In the course of our investigations on serotonin antagonists, Dr. Troxler produced in the sequel yet stronger and more specifically active compounds. The most active entered the medicinal market as a medicament for the treatment of migraine, under the trademark "Deseril" or, in English-speaking countries, "Sansert."

Pat

Title: Re: Sansert Users
Post by dizzyd on Feb 10^th, 2003, 6:05pm

Hi Pat,

Thanks for the information. I did read your posting on Sansert and I am sorry for the "loopiness" it caused you. It does that to me in the beginning for the first few days but the side effects diminish pretty quickly and I only take 2mg 3xday so I am on a low dosage. of course, this dosage usually increases by the end of the 6 month making coming off it difficult, but I must say it keeps my clusters controllable, although not in remission.

In regards to the Deseril, I read the postings about this and printed them out for my doc and she looked up Alliance Pharmacueticals and found the drug -- verifying the match with Sansert. The problem is .......how do you get the UK to ship it to you?? If you have any information on that please let me know. I am wondering if a pharmacist could do it easier than me........another bridge to cross...........for now I have ordered it from Myprescription.com, a Canadian pharmacy.............hopefully I get without any problems.

Anyway thanks for the response, I am keeping a folder full of information "just in case" for my doctor and future battles......

Title: Re: Sansert Users
Post by ComputerGeek on Feb 10^th, 2003, 8:19pm

Hi dizzyd,

It wasn't me who had the loopyness, I just responded in that thread. The problem I have with Sansert/Deseril is that I break out in a cold sweat on top of my head and my feet feel like they are freezing. As for getting Deseril, go to mastersmarketing.com. This is the only place I have found to get it. Let us know if you get Sansert from Canada as it is much cheaper there.

Pat

Title: Re: Sansert Users
Post by dizzyd on Feb 11^th, 2003, 1:30pm

Hi Pat,

I will definitely let you know if I get it............the pharmacy has accepted my order, payment, application, faxed prescription last Thursday and I receieved a confirmation from them. So far no bad news indicating that it can not be filled or that there is any other problem.........my fingers are crossed. If it works look for a response on this thread as I will post with whoops of glee!!!

DizzyD

Title: Re: Sansert Users
Post by dizzyd on Feb 11^th, 2003, 1:32pm

Pat,

Forgot to say they said "21 working days" for me to receive order.....................!!! I am dying until then......

Title: Re: Sansert Users
Post by ComputerGeek on Feb 12^th, 2003, 3:04pm

Hi dizzyd,

OW! 21 days?? That hurts. I received Deseril in 10 days from the UK. I hope you get your delivery before your CHs get really bad.

Pat

Title: Re: Sansert Users
Post by dizzyd on Feb 13^th, 2003, 9:43am

Hi Pat,

I can't believe you got in that quick for the UK......!!
That's great!! I thought it would be very difficult to get from the UK, but I guess I was wrong..........if this doesn't work from Canada then I will definitely try UK as my doctor gave me two prescriptions just in case.

I had to fill out a 9 page application from Canada with doctor's DEA # and License # and address, phone, etc so they could verify all information.........supposedly that takes 2 weeks.............then 1 week for shipping.........I am a bit discouraged about it all but I am hoping and praying it works out as the price is really cheap.

Clusters are okay for now I had an old script that hasn't yet expired and doc said it was okay to take, problem is there is only enough for take 2 day for 21 days and then that's it....................I am trying not to think about that day and just hoping the meds get here by then.

Anyway, take care.........
DizzyD

Title: Re: Sansert Users
Post by Rogerclarkbar47 on Feb 13^th, 2003, 8:15pm

It took several years to find the right medicine and Sansert was such a relief when my neurologist prescribed it. I always had to get to 4 and sometimes 5 per day to make the headaches stop. Coming down was no easy trip either. I have had several "flashbacks" or "head pulses" and I have been off Sansert for at least 5 years. Partly because I had a few years of freedom and when I needed a renewal of prescription, I found out my neurologist had retired - fortunately he was still alive and I was able to make contact. He refered me to another doctor who gave me (3) prescriptions on the first visit. Indomethacin 25mg, Hydrocodone and Imitrex. He told me to take them in the order listed if the headache did not disipate from any one. The good news for me is that the Indomethacin always seemed to work. At 50+ years of age however I am getting concerned about taking medications and now I just finished a bout of clusters (and thank God they are not as frequent as they were in the past) and I did it without taking any medication. I have developed my own little concentration or meditation technique. First I try to get in a room all by myself. Then I get down on my knees and put my head to the floor. I cup my hands over my ears and close my eyes. I then do deep breathing and try to concentrate on either nothing or paradise. I keep doing deep breathing and try to blot out everything else. I'm never sure how long I stay in this mode but eventually I realize the headache has passed and I slowly uncup my hands, open my eyes and sit up. I think the time has varied from 5 minutes to 30 but it has always worked - and without meds. I don't know if this will work for you, but it does for me. I have over 40 years of headache suffering and am so glad I found this cluster remedy. Now if I could only get it to work on my sinus or tension headaches. ;) ;)

Title: Re: Sansert Users
Post by dizzyd on Feb 14^th, 2003, 9:14am

Hi Roger,

I just read your post and I am glad that you are able to contain your clusters medicine free. When I am not on Sansert I always try medicine free first, sometimes it works but not often. I have no other meds besides oxygen so if I am not at home I fear I have no choice but to try to abort myself. I have tried to mediate and concentrate my way out of it, I have tried squeezing the nerves, holding my head, ice, heat, drinking hot tea, drinking cold water, and on some occassions it does work. The thing is that when the clusters are really really bad (8, 9, 10 on KIP) nothing will work, sometimes not even the oxygen. Even though I am a chronic sufferer of cluster headaches I do have cycles where for some reason the clusters are extremely active and painful just like episodic people and then the rest of the time they are not as frequent or painful and more easily controlled by non-medicine or over-the-counter (excedrin) or methods as you describe. These clusters just have a mind of thier own and when they are out-of-control I have no choice but to use Sansert. I have been on and off of it for the past ten years. Always an awful experience to get used to them and then to get off of them. I agree that 4-5 a day is usally what "stops" them during an active time and unfortunately right now I am only take 2xday so they help somewhat but by no means are they controlled and when they hit, they hit really really big.

I am not sure what indomicin is? Could you tell me what this is? It might be worth a shot to try it. Doc will not give me any type of triptan while on Sansert so if I can't control it with Sansert my only other option is oxygen or a non-med remedy.

Everytime I go on a Sansert "holiday" I keep expecting that maybe this time I will go into remission, maybe this time they will stop, maybe now that I am older (43) they will start to fade away and I will not get them anymore but then BANG------ 8-9 months they are back with a vengence (of course they never go away completely) so severe that I swear my head needs to explode......

Tough battle every time.............

I pray that your clusters stayed controlled without meds and wish you the best, maybe someday I too will get to that point.

DizzyD

Title: Re: Sansert Users
Post by brewcrew on Feb 14^th, 2003, 7:33pm

Quick update: Called my neuro's nurse today at 11:15. Much to my chagrin, I found out that she only works until 10:30 on Fridays. Arrrgh! Left a message for her to call me. Just wanted everyone to know I hadn't forgotten.

I will be finding out what type of prophylactic my neuro will prescribe to replace Sansert. I'm currently tapering off Prednisone (down to 20 mg/day from my full dosage of 60 mg/day) and taking 240 mg Verapamil 2x/day. Haven't had a visit from the beast for about a month, but the Verapamil sure does sap me of my usual joie de vivre.

Title: Re: Sansert Users
Post by dizzyd on Feb 16^th, 2003, 11:26am

Brewcrew,

Sounds like you might be in remission, no clusters for a month -- YAHOO!!!

Best of Luck --- you might not need to be on replacement for Sansert ...........

DizzyD

Title: Re: Sansert Users
Post by brewcrew on Feb 16^th, 2003, 2:09pm

I know! Yippee skippee! I'm in that weird transition stage when one isn't sure if the beast has gone to sleep or if it's the altered blood chemistry that's keeping it away. It would be wonderful to find that the Verapamil alone is keeping it away, but I'm not going to get my hopes up. Expect the worst, hope for the best. Thanks for the kind wishes, dizzy.

Bill

Title: Re: Sansert Users
Post by brewcrew on Feb 17^th, 2003, 8:00pm

Talked to my neuro's nurse today, and she said that he would prescribe methergine as a subsitute for Sansert if I need it. I'm finding it a little difficult to believe, however.

From healthsquare.com:

"Methergine, a blood-vessel constrictor, is given to prevent or control excessive bleeding following childbirth. It works by causing the uterine muscles to contract, thereby reducing the mother's blood loss."

The blood vessel constriction part I can understand, but it doesn't work at all the way methysergide maleate (Sansert) does.

My first avenue in the morning will be to find out if there are any Canadian pharmacies listed as participants in my insurance company's network plan so I can continue to get Sansert.

Bill

:-[

Title: Re: Sansert Users
Post by dizzyd on Feb 18^th, 2003, 10:24am

Hi Bill,

I have ordered Sansert from Myprescription.com a Canadian pharmacy. They told me 21 working days so I have not gotten it yet but the cost was relatively low -- around $78.00 including shipping for 100 pills. If I get this order with no problem I will order an additional 200 immediately....................I do not think my insurance will cover any prescriptions bought outside the US but I have no choice but to pay cash, I need the script and I will try appealing thier decision with the help of my doc (she agreed to do whatever necessary to help).

Please let me know if you find another pharmacy that accepts any US health plans...............I would like to give that a shot

Take care and good luck,

DizzyD

Title: methergineRe: Sansert Users
Post by dizzyd on Feb 18^th, 2003, 10:34am

Bill,

Forgot to say, I never heard of using methergine for clusters............anything is possilbe though. My understanding is that there is NO DRUG on the market comparable to Sansert and its properties. I just can't believe that the manufacturing took it off the market knowing this.........usually there is a better product or something similiar...............I don't know who made that decision to cancel production of the drug but they obviously did not have any consideration of the people using this drug.

Anyway down here in Boston the "headache team" at Spaulding Hospital is meeting to discuss what to do about the situation as ALOT of patients are prescribed Sansert and now without anything. My doc who is part of this team is going to let me know if they have come up with any solutions...........I gave her all information for the Canadian pharmacy and I am hoping that some sort of deal can be worked out with the hospital pharmacy to have it shipped there so patients can have access to it.....................not sure what they can do about insurance coverage but they (the docs and pharmacies) definitely have more "power" than we do so I'm hoping for something good...................

In the meantime I will beg and borrow to get my script........

DizzyD

Title: Re: Sansert Users
Post by zorro1p on Aug 16^th, 2003, 9:07am

So I haven't ssen any posts on this topic since Feb 2003.
What happened? Did anyone get the Sansert from Canada?

HELP!

Rod

Title: Re: Sansert Users
Post by dizzyd on Aug 18^th, 2003, 3:55pm

hi Rod,

Just want to let you know that Yes, I have received now 3 different scripts for Sansert from Canada. 1st one took about 45 days, 2nd one about 30 days and 3rd one about 18 days.

Wish you luck, there are several other posts on a different thread that further details what pharmacy in Canada I got them from. You have a problem locating the tthread let me know and I will send you more information.

DizzyD

Title: Re: Sansert Users
Post by zorro1p on Aug 18^th, 2003, 4:08pm

Hi,

I've contacted Myprescription.com and called them. They have them in stock for about $0.70 per tab vs $2.25 per tab in the USA (When I could get them). They're in Montreal and I'll be there on business next Thurs but they won't let me pick them up directly! Bummer .... I'm located in Binghamton NY which is about a 6 hour drive from Montreal. In any event, I'm trying to get my doc to fax them the script and I'll bird dog it personally over the phone until I get them.

As for the Insurance company .... they won't pay for orders outside the USA and told me it was illegal to import them. Screw 'em. I'll pay for them myself .... better than daily headaches for the next 8 weeks .... I'll order enough for the next round of HA.

Thanks for the feedback and I'll update the board as I make progress .... I run out of supply on Sunday ...... AHHHHHHHHHHHHHH

Title: Re: Sansert Users
Post by dizzyd on Aug 18^th, 2003, 4:18pm

Hi,

That is exactly where I got my script from -- "MyPrescription.com", believe I paid $84.00 for 100 pills including shipping.

I had to fax script from my doctor plus fill out a long questionnaire and that took (or so they told me) 2-3 weeks to review and verify.

My best guess is that they do not have Sansert in supply and have to order and that is what is takes so long to get it.

Best of luck. All my deals were cash also as my insurance would not pay for it. I did have the blessings of my doc though so if it is illegal then my doc okayed it anyway.

I personally would buy if from the devil if I had to!
DizzyD