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New To The Site -- CH Since a teenager


Darcyo55
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Hi all.. I am a 61 year old male from Airdrie, Alberta, Canada. I have been suffering from cluster headaches since I was a teenager. The longest cycle of attacks was 150 attacks in 33 days. Then I went into remission for 2 years. I have had them almost every 2 years, lasting up to 1 month, with 2 to 3 atracks a day.

I tried O2 but it did not work at all. I have tried it @ 5 different times over the years.

The only remedy that I have found to stop an attack, is Imitrex pills, 100mg. Imagine, I take 2 to 3 pills a day, for up to 1 month. What is this doing to my liver, or kidneys ??

My GP prescribes Verapramil -240 mg, ,Amitriptiline 20 mg, and 10 days worth of Prednisone -50 mg once a day to stop the cycle of Attacks. Sometimes I have to take 2 Imitrex pills to stop an attack.

This has worked 80% of the time. There were some cycles that I had to double up on the prednisone.

I went to a headache specialist st our hospital, and she recommended this site. She also "recommended" that I take non hallucinating LSD, , or non hallucinogenic magic mushrooms .. My problem is ,WHERE CAN I FIND these non hallucinogenic drugs around Calgary ? How much are they ?

I am now on day 17, and headache #32..

Your help is greatly appreciated..

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Hi Darcy...welcome! 61 here too!...it's good number...yes?

 

Can't answer re the psychoactives (this site can help)... BUT...for the O2 are you using a non-rebreather mask at 15 lpm or higher at FIRST sign of a hit?...tis a beaut...........breath HARD and FAST...til you're dizzy really...

 

I'm NOT impressed with your GP...the specialist sounds better but what else does he/she say besides "go there and psychoactives

(which is enlightened) "?

 

Pills are worthless for a hit abort...it's too slow therefore too late. Can you get injections of Imitrex or Zomig nasal spray (my last resort savior).

 

Drop the Amitriptyline...tis an OLD migraine med with POOR success for CH....and depressing side effects...

 

Prednisone should be used for a 1-2 week  taper (high to low daily doses) ONLY...while a prevent (like verapamil) takes effect....it's long term effects are NASTY!

 

240 mg of Verapamil WAY too low...most find the sweet spot at 480 or higher....I used 960-1020 mg/dy...

 

Search the Vitamin D3 regimen here and at clusterheadaches.com...great success...minimal side effects...inexpensive..

 

Best

 

Jon

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Great post from Jon there!  Please heed what he says, particularly about oxygen!!!  It will work for you, I would almost guarantee it, if you get a high-flow system with a good mask.  And he's right about the triptans: injectable is best; nasal spray is second; pills are far, far behind.  Usually (as Jon says) prednisone is administered as a taper, with one high dose of 50 or 60mg and then rapidly decreasing amounts.  The prednisone will mess you up in the long run more than the triptans -- you need to be really careful with that. Everything Jon says is correct.

 

Here's info about the D3 regimen that he mentions: https://clusterbusters.org/forums/topic/1308-d3-regimen/

 

Try an energy shot, such as 5-Hour Energy, just as you feel the attack coming on.  That helps a lot of people reduce the severity of the attacks.  Some people find that putting their feet into a bathtub with water as hot as they can stand will stop an attack or reduce its severity.  Melatonin at night, starting at 10mg, is effective for some people.

 

Regarding "busting" -- treating CH with psychedelic drugs -- you can read a lot about that in the numbered files in the ClusterBuster Files section of this board.  There really aren't any non-hallucinogenic magic mushrooms.  Some people find they can take low enough doses not to have a serious "trip" and still treat their CH, but with mushrooms, you're gonna trip some.  And I'm afraid no one here can tell you how to get them or provide them to you, since they are illegal.  A substance that is legal to buy and to possess, and which does not cause tripping at the level used to treat CH, is rivea corymbosa seeds.  They are illegal to "process" or consume.  You can read about them in the numbered file about LSA.  You can buy them from a Canadian supplier.  But we're getting ahead of ourselves, since you cannot be using triptans when you do "busting" (see the file on "Playing Well Together").  I'm imagining that would be hard for you (even though those pills probably aren't really helping you much), which is why getting oxygen working for you as an abortive is very important. 

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In my experience, taking imitrex of any kind extends the length of an episode and increases the frequency of hits.  It's something to consider.  The other night I resorted to imitrex shots and got blasted the next day/night.  By far the worst of my 3 weeks into this round.

 

For me, it's O2, ice, energy drinks\shots, and capsaicin spray up my nose.  Extended use of imitrex can be damaging to the heart.  I havent read anything about the liver -

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Thank you all, for the very informative posts !! When my GP prescribed the O2, they only gave me the smaller tanks. With the pressure that was prescribed to me ( don't remember it ) , I would go through 2 of the smaller tanks in 2 days. I still found that it didn't work.. Where can you pick up bigger O2 tanks ?? As for the Imitrex pills, it has worked awesome for me as an abortive. I have tried Zomig on 3 different cycles, and finished the prescription each time, with no success. I still took an Imitrex pill to abort . I have also tried Migranal, and Cafergot. I will try the larger doses of Verapramil , and try the O2 once more, with the non-rebreather mask and 15lpm..

Thank you so much, again !!

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If your O2 is prescribed, then your supplier is obligated to give you the bigger tanks.  You want an "M" tank or an "H" tank (at least one; two is better).  It's good to also have a smaller tank, usually an "E" tank, that you can take with you when you are away from home.  (The larger and smaller tanks use different types of regulators, but each should go up to at least 15 lpm.)

 

This is a very good mask to have: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit  You would have to order this yourself; it's not something your O2 supplier is obligated to give you -- but of course they should give you a non-rebreather mask.  When you get the mask from your supplier, if there are open holes on one side, with no gasket, block them with tape or with your thumb.  You want as little room air as possible getting in with your O2 as you inhale.  Cut off the strap (or at least don't use it) and press the mask firmly to your face.

 

You can also get bigger oxygen tanks from a welding supply store.  Note that these are not "medical-grade" tanks, although many, many people use them without issues.  If you're going to go the welding route, let us know.  But you shouldn't have to.

 

Because trex pills don't work for most people, I'm curious about how you took them and how long the abort took.  I'm also surprised that the pills worked and the Zomig didn't.  You were using the Zomig to (try to) abort attacks, right -- not as an preventive?

 

Strongly urge you to give the D3 regimen a try, too:  https://clusterbusters.org/forums/topic/1308-d3-regimen/  Good results from that can reduce your reliance on the pharmas.

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