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godsjoy777

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My 1st Neuro Visit in 6 years-RX Sansert
Sep 2^nd, 2009 at 8:44pm

Hi all,

After getting off the hCG I was on during the diet ( it suppressed the Clusters for most of the time) the beast has ramped up pretty strong...ie ER visit last Thursday as my O2 wasn't working and my 4th hit of the night at 4:00 am turned into a nightmare...O2 all gone and a kip 10 I'm sure....I even started vomiting....maybe from the pain or some of the monster and meds I tried during the night.....

Anyways, I decided to visit a new Neuro and "hope" he would listen to me and see what I could get to finish off the rest of this cycle's beast...It technically should be over....at least maybe the next few days or a week or two at the most....that is if the Clusters act like they usually do.....which we all know is never certain....

Well...I got several samples of Mexitrex to abort any Clusters that don't get aborted through O2....AND...interestingly enough he prescribed Sansert......He said I know you cannot get it in the US anymore which is a shame...but you can go online and get it through a Canadian Pharmacy....

I know I have read good things before on this board about Sansert and how many of you were sad when they stopped making it in the US...

My Dr said it has always been the best abortive and for our small little niche of Clusterheads, it is unfortunate they stopped....but if I don't mind buying it from Canada, that would be the best choice for me.....I could probably start it a couple of weeks that I forcast my Clusters starting up again next year...starting at 2mg once per day for a week or so and then I could start ramping the dose as needed up to 8 mgs per day....He gave me 120 quantity at 2mgs per pill....with 5 refills....

I'm encouraged and hope to hear anyone else's experience with this drug.....Also which Pharmacy might be hte best...cheapest....I am expecting to pay approx $125.00 per RX.....not terrible if it works..

Pain Free prayers for one and all!

Karen

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bejeeber

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Re: My 1st Neuro Visit in 6 years-RX Sansert
Reply #1 - Sep 2^nd, 2009 at 9:05pm

Well everybody reacts differently at different times of course, but personally, when I was prescribed Sansert approx. 20 years ago I didn't like it, and it was ineffective for me.

I wouldn't try it again.

YMMV though!

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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lorac CH.com Old Timer Offline Imagine Posts: 433 Tennessee Gender:	Re: My 1st Neuro Visit in 6 years-RX Sansert Reply #2 - Sep 2^nd, 2009 at 9:30pm keep us posted as to how it works for ya! lorac
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Brew

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Re: My 1st Neuro Visit in 6 years-RX Sansert
Reply #3 - Sep 2^nd, 2009 at 9:47pm

I am currently tapering off methysergide maleate (Sansert) after having been on it for about 6 months. You have to take a one-month holiday from it every 6 months to reduce the risk of kidney, lung, and heart valve fibrosis.

It is very effective for me. The first couple of doses will give you some unpleasant side effects, but they disappear quickly (24-36 hours for me). Nausea, vomiting, diarrhea, visual auras.

I get mine from a compounding pharmacy here in the States. My insurance wouldn't pay for it from Canada, but they have their own in-house compounding pharmacy, from which I pay $75 for a 90-day supply (2mg 3x per day).

Most medium to large cities have compounding pharmacies. Sansert isn't illegal in the US, it's just that nobody can make it and make a profit at it anymore. It used to be made by Sandoz.

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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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godsjoy777

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Re: My 1st Neuro Visit in 6 years-RX Sansert
Reply #4 - Sep 2^nd, 2009 at 10:44pm

Thanks Brew,

Important tip as I get several other meds like my thyroid, DHEA, Progesterone and Estrogen all from compounding pharmacies and we have good relations with several of them. I don't know how well my Ins will pay, but $75.00 for 270 tabs is better than $125 for 120 tabs anyday.....I will check into it this week....

I don't expect to actually start it 'till right before my next cycle.....but you never know what might happen if this cycle doesn't quickly wind down.

Bejeebers: There are some meds I took 20 years ago I would never revisit...ie Verapamil...but there are some I might try again....so we will see!

I appreciate everyone's imput here.

Blessings!
Karen

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Lawrence CH.com Veteran Offline There WILL be a cure Posts: 163 Merrillville, Indiana Gender:	Re: My 1st Neuro Visit in 6 years-RX Sansert Reply #5 - Sep 2^nd, 2009 at 10:45pm Hey Karen, Did you ever try the Zyprexa?
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godsjoy777

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Re: My 1st Neuro Visit in 6 years-RX Sansert
Reply #6 - Sep 2^nd, 2009 at 10:51pm

Lawrence,

I asked my Neuro about it and gave him the study that was posted here. He wasn't convinced that 5-7 people in a study was a good enough reason to try that first. If I felt this wasn't a good prevent along with my O2 ( he was in favor of my keeping on my O2 and getting a stronger flow regulator if I could), then I would look for other options, and I probably get him to prescribe it as he is very nice and ameable to my suggestions.

He has several Cluster Patients that seem very happy with the Sansert. He told me about the one month break after 6 months, and any possible reactions, but I don't have to stay on it year round anyway.

We shall see.

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Joni CH.com Old Timer Offline Knowledge is Power Posts: 476 Gender:	Re: My 1st Neuro Visit in 6 years-RX Sansert Reply #7 - Sep 3^rd, 2009 at 2:08am Karen- In my experience, Zyprexa has been far superior to Sansert and without the scary side effects. I did have some side effects the first few times (as if I had taken an anxiety med) but it got better quickly. Good luck!
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Bob Johnson

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Re: My 1st Neuro Visit in 6 years-RX Sansert
Reply #8 - Sep 3^rd, 2009 at 5:04am

Canadian/Other Country/U.S. Pharmacy info
(Posted 9/1/05)

--------------------------------------------------------------------------------

This info from CONSUMER REPORTS, 10/05:

Source of info about online pharmacies with a similar review process plus price information:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

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Bob Johnson

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godsjoy777

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Re: My 1st Neuro Visit in 6 years-RX Sansert
Reply #9 - Sep 3^rd, 2009 at 8:29am

Thanks Joni,

BUT....Zyprexa is an abortive and Sansert is a preventative.....I love my O2 better as an abortive and for the worst of the worst that won't get gone with my O2 I am trying the trexamet samples he gave me....It gave we a great night's sleep last night....Only the one hit rather than the usual 5.

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godsjoy777 CH.com Veteran Offline HIS name is above clusters Posts: 182 x0\|Grand Prairie, TX\|USA\|\|0\|0\| Gender:	Re: My 1st Neuro Visit in 6 years-RX Sansert Reply #10 - Sep 3^rd, 2009 at 8:33am Also...Thanks Bob for the link to Canadian Pharmacies....I will check out all the options...and I won't be worrying about which one I really will take or not 'till next year....I HOPE....Praying this one is winding down....I'm on week 14 of a usual 12 week cycle...hmmm
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jim murphy

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Re: My 1st Neuro Visit in 6 years-RX Sansert
Reply #11 - Sep 4^th, 2009 at 11:07am

Karen;
I'm 58 and have had clusters since I was 16. I was prescribed Sansert about 20 years ago and took it for about 5 years. I honestly don't think it did anything for me but everyone is different. It may be exactly what you need. I will warn you though that you have to taper there use when the CH stop. I got horrendous rebound HA,s a couple of time by coming off them too quickly
Jim

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tracylee CH.com Newbie Offline I Love CH.com! Posts: 3 Richmond,B.C. Gender:	Re: My 1st Neuro Visit in 6 years-RX Sansert Reply #12 - Sep 8^th, 2009 at 3:14am Ah sorry to say godsjoy Sansert is now also discontinued in Canada. Actually it was as of febuary but the supplies are just now ending! I know I got the last in Bc and I have 5 days left! Using sucessfully for 8 years best of luck!
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godsjoy777

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Re: My 1st Neuro Visit in 6 years-RX Sansert
Reply #13 - Sep 8^th, 2009 at 8:22pm

Thanks for the info Tracylee.....I have been thinking about it anyway and am not sold on trying it....The preventatives have always messed me up for too many months and I really would like to stay as med free as possible....

But....if you saw earlier in the posts that you can get it through a compounding pharmacy...seems easy anough and cheaper too...

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Ricardo CH.com Veteran Offline I Love CH.com! Posts: 214 MA Gender:	Re: My 1st Neuro Visit in 6 years-RX Sansert Reply #14 - Aug 10^th, 2011 at 2:13pm Have you thought about the natural "alternative" to Sansert that many people only need to take a few times a year? I'm guessing you've been on the board long enough that you are familiar with our our Clusterbusters site....But had to ask
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godsjoy777

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Re: My 1st Neuro Visit in 6 years-RX Sansert
Reply #15 - Aug 10^th, 2011 at 2:25pm

Wow....Little did I know that I posted this 2 years ago during my last cycle....I did NOT purchase Sansert then....Talk about space cadet.

Yes Ricardo,
I got some seeds a few years back but didn't try them....By the time I came back into cycle they were too old....Yes it is a bit frightening I have to admit. I hated the feelings I got in college when I tried that stuff....and although I know some people don't have any hallucinogenic issues when they take a certain dose, some here have and that is not what I want right now. I have in the past been able to deal with O2....things are just not the same now tho'.

Blessings,
Karen

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Brew

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Re: My 1st Neuro Visit in 6 years-RX Sansert
Reply #16 - Aug 10^th, 2011 at 5:02pm

Back when I responded to this thread in 2009, I had not yet become a buster. Now I'm happy to report that I need only ingest 1.0 - 1.5g of dried fungus on the average of every 5-6 months, trip MILDLY for a couple of hours, and enjoy my pain-free life for the next 180 days.

I would NEVER go back to Sansert because of the horrid side-effects it can cause, namely fibrosis of the kidneys, lungs, and heart valves - all of which is irreversible.

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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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Jimi CH.com Moderator CH.com Alumnus Offline Don't feed the moderators Posts: 4925 Madisonville, KY Gender:	Re: My 1st Neuro Visit in 6 years-RX Sansert Reply #17 - Aug 10^th, 2011 at 5:11pm Brew....I guess I need to look at the dates closer. When I read that you were tapering off Sansert, I thought....I didn't know Brew was on Sansert. Then I see that the original posts were in 2009.
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: My 1st Neuro Visit in 6 years-RX Sansert Reply #18 - Aug 10^th, 2011 at 5:16pm I guess....
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LasVegas CH.com Sponsor Offline Episodic CH since 11 yrs old, now 50. Posts: 2020 north of the 60th parallel Gender:	Re: My 1st Neuro Visit in 6 years-RX Sansert Reply #19 - Aug 12^th, 2011 at 11:55pm I remember being prescribed Sansert back in 1979 when I was 11 yrs old and it helped abort my CH's. One small pill that came in a foil individual package and dissolved under the tongue.
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