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ClusterBusters

Platypus

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Everything posted by Platypus

  1. Platypus

    Has anyone had success with DHE 45

    I have migraines not CH but I use DHE45 as a preventative. I inject SC 3x/day. It keeps me alive, but unfortunately there has been a national shortage of DHE for the last year, both the generic and the brand. So it's not a medicine I would recommend at this time.
  2. Platypus

    The effects of oxygen

    O2 doesn't help me at all. But my HA's are more migraine w/ features of cluster.
  3. Platypus

    Wikipedia

    Theoretically yes. It's a bidding process. Here in the SF bay area I only get one paid ad when I do a google search on "cluster headache", an ad for Excedrin. I refreshed my browser multiple times, clearing the cache each time, and that same ad always came up. That tells me Excedrin has paid for the keyword "cluster headache" and no one else in the SF bay area has even bid. So Excedrin might be paying a penny/month for that ad. In Des Moines, Iowa there might be a neurologist who has bid locally on "cluster headache" (you can do that), so he might be paying a nickel/month and Excedrin might be paying a dollar/month, and users in Des Moines see Excedrin's ad 20x as often as the local neuro's. I believe there are online tools that can figure out how much you need to bid on a keyword phrase to get it to show up a certain percentage of the time. If not, you can just experiment w/ adwords and do tests to see how often your ad comes up. Oh, heh, that's another thing about wiki, it's totally inconsistent. The little school marms can't possibly monitor the whole thing, so lots of pages slip under the radar and break all the rules. It's unfortunate that the CH page has caught some frustrated little admins' attention. -Platy
  4. Platypus

    Wikipedia

    A couple of comments: Regarding wikipedia What you folks have been dealing with is what everyone deals with who tries to add useful information to wikipedia. wiki admins have been called "The 21st century book burners". Anything they see that they don't care for -- they delete. Yes, wikipedia has rules, but in the same manner that most lawyers view the law not as the arbiter of justice, but as something to be manipulated to gain their desired result, most wiki admins wield the site's rules in the same way. Regarding google search There are two types of google search results: organic and paid. Paid search results show up at the top of the page in the shaded box, and google now labels them as "Ads related to Xxx" where Xxx is the term you searched for. Organic results are determined by google's INCREDIBLY complex algorithm, which they are constantly refining -- but their goal is to return the "best" search results. That's how google got to be Number One. HOWEVER... research has shown that users do not differentiate between paid and unpaid search results. (Whether this has changed since google added the "Ads related to..." text to paid results IDK, but I doubt it's changed much. It's at the top of the page and shaded. So it grabs people's attention). The way that you buy paid search results on google is with http://google.com/adwords. Explaining adwords is beyond what I can cover here, but basically, the more desirable a search phrase, the more google charges for it. (I would venture to bet that "cluster headache" is not that desirable a search phrase). The desirability determines a price range, and how much you pay within that range determines how frequently your ad appears in the two paid spots. This is an oversimplification but gives you the basic idea. it's easy to open an adwords account and bid on a search phrase ("keyword" is the term google uses). Just go to the site and check it out. -Platy
  5. As you may know, this medicine has become virtually impossible to acquire since the UK manufacturer Alliance Pharmaceuticals discontinued the Deseril branded product in March of this year. An alternative is to have Methysergide compounded by a compounding pharmacy. But compounding pharmacies are confronted by a world-wide shortage of Methysergide. Aborn Compound Pharmacy (http://abornpharmacy.com) in San Jose, CA is interested in allying with the user community in finding a source for Methysergide. If a source can be found, Aborn will purchase the chemical in bulk (on the order of 50g) and will offer it by prescription from any licensed US physician. They can ship anywhere in the world. This thread will serve to monitor progress in obtaining a source for Methysergide.
  6. Platypus

    Methysergide / Sansert / Deseril availability

    Shitty. Hardly leaving the house. In bed most of the time.
  7. Platypus

    Methysergide / Sansert / Deseril availability

    No, Methergine doesn't need to be compounded, it's available in .2mg tablets as is the generic Methylergometrine. 1mg Sansert = .2mg Methergine. You should theoretically be able to swap them pill for pill. Hope it works for you!! Here is one random place on the internet where people are gathered, freaking out over the discontinuation of Methysergide: http://bit.ly/Iz6wsS
  8. Platypus

    New to CH and the forum

    and they assume woman w/ headaches = migraineur.
  9. Platypus

    New to CH and the forum

    Prednisone is very effective at stopping headaches while you are on it. But it isn't safe to take too frequently -- that's why you haven't been prescribed again. Some doctors will only prescribe every 6 months. Others are much looser. -Platy
  10. Platypus

    Methysergide / Sansert / Deseril availability

    Methergine not working here. The last two weeks have been hell. I'm down to 4mg/day Sansert which is a sub-therapeutic dose for me. I bumped back up to 6mg yesterday because I am down to one vial of Demerol. I'm hoping my neuro will write me a refill, even though I have blown through a month's supply in two weeks. Today, my 2nd day back at 6mg is the first day I haven't had head-crushing pain in two weeks. But I'll pay when I drop back down to 4mg tomorrow, and then 3mg next week. I'm doing acupuncture w/ this old Chinese acupuncturist, much loved in the bay area and he worked a miracle for my friend's headache's. But no miracle so far for me... Hope you have better luck w/ Methergine #mom.
  11. Platypus

    DHS and courts

    Lots of good evidence supporting efficacy of busting. Best of luck.
  12. Platypus

    Clusterbusters makes The Atlantic

    and our own Cindy Reynolds! Fantastic piece.
  13. Platypus

    Dr Elliot Shevel

    BHD - Any comments on nerve decompression surgery? This seems to be in fashion for migraine, w/ some good reports from patients online, but I'm not sure what to think. -Platy
  14. Platypus

    Methysergide / Sansert / Deseril availability

    Well I have a bottle of Methergine in my hot little hands. Will be crossing over from Sansert over the next few weeks. I would love nothing more in the world than for this to work... -Platy
  15. Platypus

    Methysergide / Sansert / Deseril availability

    @1961Mom - BostonHeadacheDoc posted an update on Brazil on page 1 of this thread.
  16. Platypus

    Methysergide / Sansert / Deseril availability

    Spectrum first told Aborn they would sell to them, then told them they would not sell to them because they are a pharmacy, and then told them they (Spectrum) don't have Methysergide after all. But they are advertising it on their website here: http://bit.ly/1bq7MJt So it is hard to tell what is going on with them. With the Chinese chemical suppliers, it's very suspicious, because Methysergide/Sansert/Deseril has never been available as a prescription medicine in the PRC. Speaking of Methergine, how many folks on this thread have tried it? The body metabolizes methysergide to methergine and methergine is thought to be the "active" agent that relieves headache. I tried it 11 years ago w/o success, immediately before trying methysergide. But I have no notes on the dose. Maybe I took too little. BostonHeadacheDoc -- any comments on safe max dose for Methergine or equivalents to Methysergide?
  17. Platypus

    Methysergide / Sansert / Deseril availability

    We're exploring that angle. But more recently Spectrum has said they don't have Methysergide at all. Thanks BostonHeadacheDoc for the Brazil information. That's very disappointing as that was one ray of hope. :-[
  18. Platypus

    Methysergide / Sansert / Deseril availability

    The latest news, as I think most of you know by now, is that Aborn's source for Methysergide fell through. The supplier was Spectrum Chemicals. Apparently they didn't know upon Aborn's initial inquiry that they were a pharmacy. When they found out, they refused to sell to them. Reason being Spectrum had previously sold the medical side of their business to Letco, and that included a non-compete agreement that prohibits Spectrum from selling to pharmacies, doctors offices or individuals. Luong, the pharmacist at Aborn has been searching world over for an alternative supplier of Methysergide without success. In other news, the Australian government just informed its citizens who use Deseril, that it will be discontinued in 30 days. Users are expressing shock and panic. And in other news, the Brazilian government called Novartis, the patent holder, on the carpet as to shortages of Deserila -- their branded version. Novartis agreed to continue to make Deserila available in Brazil. It is possible Brazil is the last market in the world it can be obtained, so if anyone has any insight into importing pharmaceuticals from Brazil, please step in. A question: Does CH qualify as a rare disease? If so Novartis could be forced to manufacture a version of Sansert in the US under the 1983 Orphan Drug Law.
  19. Platypus

    4 step program

    I just bought that Harbor Freight regulator today and it does indeed come w/ the barb fitting. -Platy
  20. Platypus

    Methysergide / Sansert / Deseril availability

    Aborn Pharmacy can now accept out of state (non-California) prescriptions. I will update my original post. -Platy
  21. Platypus

    Methysergide / Sansert / Deseril availability

    As mentioned, I've been on Sansert since 2002. I don't take the drug holidays as I can't tolerate them. I get daily level 10 headaches once I taper down to < 5mg. For 11 years I've been asking my doctors why I'm supposed to take the drug holidays, and I've never gotten a good answer. I was finally vindicated just recently in a consult w/ Dr. Neil Raskin (one of the top HA specialists in the world). He told me, "I don't make my Sansert patients take the drug holidays. There's no scientific evidence supporting them." The side effect that Brew mentioned is Retroperitoneal fibrosis (RP). It is rare -- I believe the stat is 1 in 3000 Sansert patients contract RP. When you start the medicine your doctor will order annual MRI's to scan for the disorder. If discovered, you must discontinue Sansert. You are considered "safe" after ~3 negative scans, but doctors differ somewhat on this. I don't get any side effects. Nothing psychedelic. You do need to taper up.
  22. Platypus

    Methysergide / Sansert / Deseril availability

    Although 2mg is a typical initial dose, patients should target 6-12mg daily (and you can titrate up rather quickly) to get full efficacy of Methysergide. I take 10mg/daily.
  23. Platypus

    Methysergide / Sansert / Deseril availability

    They come as powder filled capsules. The price is decent. I'm not sure if the pharmacy would want their prices posted on the internet. PM sent.
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