Clusterheads

Howdy everyone. I’m a 41 year old man and have had clusters since I was 8 years old. I was misdiagnosed until 2006 when I began an 18 month long cycle.

I began a new cycle on April 8th this year and have had to go on disability leave from work. My attacks happen between 3am and 4am and shoot me straight to my feet from a deep sleep.

I’ve not had any medication work for me. Imitrex, Migrainal, Depakote, Topamax, Zomig, Lithium and of course Prednisone. I only had bad side effects from them all.

I currently am extremely lethargic, weak, nauseous and have tingling in my lips , nose and my left hand index finger and thumb. The tingling started after a more painful than usual attack Wednesday night.

I am so relieved to have found this site and look forward to being in touch with you all!

God bless!

Just wanted to say hi  & welcome

39 year old here but I've only had one cycle so far (and that was enough)  I was diagnosed with in two weeks of the start of it (than you Lord ) and put on volterol and max melt which had no effect what so ever and then put on verapamil (which made me jumpy shaky and numb ) and imitrex injections which are grate.

I've not tried O2 yet but every one here say it is the front line abortive .

any way I'm rambling now so again welcome

Nigel

Ouch, you've certainly run the gamut. 2 suggestions, first is the most important. Read the oxygen info link on the left and try oxygen! 31 year ch'er here, I'm 50 years old. I can abort an attack in 6-10 minutes just by breathing pure 02. PLEASE, give it a shot. The keys, your lungs must get ONLY oxygen, no outside air, no exhaled air. So nasal canulas and rebreather masks do not work.

You will need a Non Re Breather Mask, and a regulator that goes to at least 15 LPM. It's damned near miraculous how fast it'll beat the beast down. (and no, I do NOT work for any oxygen companies! ;D)

The second suggestion may or may not help. Many who suffer the night time attacks, what I call the night terrors, have found a level of relief by taking an over the counter supplement Melatonin. Vitamin stores and health stores will all carry it. Start with 9-12 mg just before you go to bed. Has helped many.

Damned glad you found us, hope we can steer you towards some relief, headaches suck! ;)

Joe

Thanks so much!

I did forget to mention I tried verapamil and 02 therapy for 3 months. I didn't get any abortive help from oxygen and I was able to get better post attack results by taking an ice cold dark shower...which I continue to do every night. The verapamil added to my flu-like symptoms of the other meds, so I stopped it as well.

I have read here that they both have helped may folks!

CHScooter wrote on May 14^th, 2010 at 2:26pm:

Clusterheads Howdy everyone. I’m a 41 year old man and have had clusters since I was 8 years old. I was misdiagnosed until 2006 when I began an 18 month long cycle. I began a new cycle on April 8th this year and have had to go on disability leave from work. My attacks happen between 3am and 4am and shoot me straight to my feet from a deep sleep. I’ve not had any medication work for me. Imitrex, Migrainal, Depakote, Topamax, Zomig, Lithium and of course Prednisone. I only had bad side effects from them all. I currently am extremely lethargic, weak, nauseous and have tingling in my lips , nose and my left hand index finger and thumb. The tingling started after a more painful than usual attack Wednesday night. I am so relieved to have found this site and look forward to being in touch with you all! God bless!

   You need a hospital .

            Potter

My neurologist said it is just typical side effects from the zomig that some people get.

What up Scooter?  Sounds like you've been through the wringer, and still going.

Don't mean to pepper you with questions, but did you do the big oxygen 15lpm or 25 lpm like people do here??  ER O2 seems like a failure for most and the little oxygen attempts people make, seem to fail too.

I don't do oxygen anymore and here is my next thought: since everything is not working for you, have you tried the cluster buster stuff??   check their website if you haven't.  I am not saying what you should do.... but you are on disability from your job and have lethargy and the shakes.  So something else is in order.  Just thinking out loud n' junk :D (googly eye guy says good luck!) Something will work for you, keep trying stuff.

--Shaggy >:(

Welcome,

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Coach bill

I will checkout the cluster buster stuff. Thanks for the direction! I'll have to check with my wife as far as the oxygen sizes go. I was pretty much non existent during that time. I know they were pretty big and heavy...I'll check.

If you are working with a good headache specialist AND you have exhausted the conventional medical approaches, then it may be time to ask the doc about one of the surgical approaches which are emerging.

I'm reluctant about mentioning them because the track record, so far, is meager, however, it's an option at least worth discussing.

Bob Johnson wrote on May 15^th, 2010 at 8:03am:

If you are working with a good headache specialist AND you have exhausted the conventional medical approaches, then it may be time to ask the doc about one of the surgical approaches which are emerging. I'm reluctant about mentioning them because the track record, so far, is meager, however, it's an option at least worth discussing.

Thanks Bob

Yes, we've discussed one which only sounds good while I'm actually in an attack. Then I think about it during my normal time, and am very conflicted. It might just be the option however.

I thought this latest season was over. I was sure the beast was gone, since it had been 9 days without an attack. Had a bad one this morning as usual at 3:45am.

Has anyone had such a short window between attacks? Last time, I was 18 months beast free.

Extremely disappointed this morning  :'( :'(

Always a mystery to me.  Since your last batch of posts what have you been doing?  Did you figure out your  previous oxygen use?  Was it 15 lpm or more with a non-rebreather?  Have you tried the melatonin nighttime thing?  What did you think about the cluster busters site?

Your cluster friend will continue to destroy you if you don't take swift offensive action.  Maybe you have and I missed it.  I know you have had them for a long time and tried a lot of stuff, but given the trends on this site, if I were you I would think about:

Big oxygen as seen in the oxygen tab to the left of the screen. 

Melatonin nighttime protocal as written about on this site.

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I'm not usually a big advice guy, but given your previous posts it sounds like this thing warrants some big intervention.  Maybe you have done all this stuff and you can skip my suggestions.  But some of these things if you don't do enough it doesn't work.  O2 is just that.

:D

--Shaggy

ps, a lot of us are 'fixers' on this site so when you post we get kind of excited about you having some pain free time! :)

Thanks Shaggy. Let's see....First, the 02 was up to 20 lpm with a NRB. It helped with post attacks, but did nothing during. I did try the Melatonin as well as the magnesium which I didn't get any change with.

I am now going to try the drastic diet change, which consists of no dairy, gluten, or anything processed, no sugar etc. I will be making every meal by hand at home and am very hopeful.

If you want to learn about the most modern use of O2 for CH, please read thru the link below.

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Don

Thanks for the link Don. The bubbler I used looked a little different, but it sounds like it worked the same. Without it, I had severe drying of my sinuses.

Just got back from my neurologist. He is having me take 60mg of propranolol ER and 2 mg of Sansert 3x daily. Nobody, including insurance and pharmacy know what Sansert is. Anybody got a clue?

I believe that you can get Sansert from a compounding pharmacy.  I hate to say it, but the inderal may not help at all.  Not only that, but you may have some side effects such as sluggishness.

Carolyn

Hi chs,

Sorry you have to be here....but it is the BEST for a clusterhead.

Based on the meds you mentioned trying without success, I too would try the sansert (works for more than a few, not me) and inderal (tho it also did nada for me and is thought to be somewhat effective for migraine, not ch). BOTH tried 20+ yrs ago. These are old meds for the condition. I would be concerned that you doc is reading out of date info...but maybe he/she is out of options.

I agree with Carolyn....you probably need a compounding pharmacy for the sansert (meythysergide)....your regular pharm SHOULD be able to direct you...or you need to find a new one.

Re verapamil....in my case, 480 mg/dy is the minimum effective dose...and 960 during high cycle.
Symptoms minimal after "break in" time. BTW...the extended release version is worthless in my (and many others) experience.

And O2....didn't work for many the first few times...don't give up yet...as is true with many of the meds...it might work the "next" time.

Wishing you success,

Best,

Jon

For success with O2, aside from proper gear, the most important thing is to get on the O2 at once, don't wait to see what the attack will do.

The longer you wait the less likely it will work to abort. Once the attack reaches higher pain levels the chances of aborting drop big time.

Don

Hey Orlando! Previously from Melbourne, Palm Bay here. Now living in the great north. I am truly sorry for all you've been through. Part of the frustration is these damn beasts never know when to quit, and they mutate like crazy! Point is, what didn't work before may be worth a second look when so many are finding the preventatives in the proper dose range (e.g. prednisone starting at 80mg, verapamil in the 400-960 mg range, and melatonin in the 9-18mg range) seems to work most of the time. And I don't know about you, but for me, 15 years of FL heat just tore me up. So stay cool, man, and keep on tryin' til you find something that's agonna work! God bless! lance

Hi,

I do hope that your cycle is starting to ease off.  I once had a cycle that lasted 6 months, in the end the neuro put me on Epilem (sp?) which I believe is an anti-epilepsy med and it stopped the cycle in its tracks!!  It may well have been about to end, but needless to say I was very impressed!!  It didn't appear to do a thing for me during the next cycle ?? so I moved on to verapamil...

Do hope you find some relief soon!  Take care,

Kate