Hey,

I am so so exhausted; gotten 2 hours sleep a night for the past 2 weeks -- started lithium this w/e and periactin at nights with the methergine.  Last night so tired from the periactin I missed my 11:00 dose of methergine and was on the o2 from 11:30 to 3:00 with a few short breaks in between.  Wow, I have had c/h for over 30 years and this cycle is hitting hard -- going through a M cyclinder every 3-4 days -- I really need a break -- if I go to bed at 8:00 do you think I'll get any sleep or do you think I'll start the cluster earlier than the usual 11:30-12:00??

Do yourself a favor and check it out.....   Lots of success stories there!

Jeannie

Brew wrote on Feb 7^th, 2011 at 7:18pm:


We do tend to hang onto stuff and seem cautious when going a new route...but Brew's right. Open your mind to whatever works...and make a list, the longer the better, of all the stuff you found here that you haven't tried. The list is good for morale, it's a reminder the beast can be beaten. And it means you are taking control of your life and the hits. Lots of stuff yet to try and no need to make the next 30 years the same as the previous 30. Keep us informed. Blessings. lance

Hi, 

I been to the clusterbuster board and have seen the videos -- but

I am 52 years old, live in the Boston area, married with a handicapped husband and a 50 hour a week executive position AND have been fighting clusters for 30 years - yes since my early 20's - and yes I am tired of the entire mess -- I have tried EVERYTHING that is mentioned here and the ONLY thing that worked for me was Sansert (and when I say "worked" I mean it controlled the clusters to a kip 4-5)-- I tried the lithium and verapmil and depakote and prednisone taper and topamax and and and...... I have tried changing my diet, water, engery drinks, caffeine pills -- you name it ..

I am nervous about the new stuff on clusterbusters - nervous about detoxing and very anxious about procuring and affording the methods discussed.

I want this cycle to just end so I can stop thinking about it and stop worrying about what to eat and how to sleep and what meds to increase, decrease, eliminate or add....

I am not irresponsible or lazy -- just exhausted and depleted physically, mentally and emotionally --

Thanks for all your replies and words of wisdom -- I will continue to read and learn.

Take care.
 

Rock,hard spot. What we have to do, often does not match with what we want to do.
Quote:

clusterbusters makes ya nervous, call me maybe we can change that. I would say up front if you do more research you would relax. Chill, stress is a trigger
406-535-4382

Your on old lady! If were out leave a message with a # to call back. If the wife answers tell her you have CH, she'll know what's what.
till then
John and Joan
the bbz

Just old enough to remember the terms "orange sunshine," "blotter," and "magic mushrooms."

You're gonna be fine. I'm convinced that God put these things on earth (or gave humans the brains to invent them) for a reason. They're medicine, and they work awfully damned well.

Clusterbusters isn't poison. The recommendations are to take dosages that are sub-hallucinogenic.

Answer this question: Would you like to take a "med" that completely eliminates the beast in your head, one that you end up having to take, at sub-hallucinogenic dosages, only ONCE every six months to maintain your pain-free state?

If you answered yes, you're ready.

The rest seems like poison once you've gone down this road.

bostondawn wrote on Feb 9^th, 2011 at 8:21pm:

Perhaps you could explain this in a bit more detail.

I'm taking it extremely easy.

hay bostondawn

I've not got much to offer other than my thoughts and prayers which are coming your way.

Good luck and God bless

Nigel

bostondawn wrote on Feb 8^th, 2011 at 6:13pm:


I'm an atheist, but I have to believe if there were a God he would almost certainly be shaking his head at the irony of people thinking the stuff over on clusterbusters is any "scarier" than lithium, verapimil, topomax, prednisone, depakote and the rest of the stuff we have grudgingly ingested in the quest for a pain free existence.

I understand your trepidation (especially with regards to work and legalities), not trivializing it a bit, but I'd lend more credence to what any one of the posters on this site (and the other ) say before I did ten guys in lab coats with their names and alpha bits stitched in blue.  I LOVE some of my doctors, but I stopped treating them reverentially some time ago.  They are constrained, by society, the government and sometimes their own egotistical tunnel vision.  WE are only subject to the constraints we place on ourselves.

Don't mean to sound preachy, I can just empathize with your viewpoint and want you to think beyond it.  And for that I'm glad you will be contacting thebbz.  I just ask that you keep an open mind.

Mase

You mentioned methergine. I found it to be quite ineffective compared to Sansert (generic name methysergide maleate).

While the drug company Sandoz has stopped manufacturing Sansert for distribution in the US, methysergide maleate is still quite legal and can be obtained from a compounding pharmacy with a prescription. They generally make it in 2mg capsules, and your doc merely has to write the script for the generic drug times however many times he wants you to take it per day.

Keep in mind that you will need to take at least a one-month holiday from it every six months so as not to develop some really nasty and irreversible side effects, like fibrosis of the kidneys and heart valves.

Hi Everyone,

Just getting in from work and have read all your posts; if I may respond:

1.  For a good 10 years, Sansert was the drug that worked best to control my clusters to spite all the serious side effects and the 30 day "holiday" that was needed every 6 months.  I had great success with this drug and even went so far as to buy from Canada when it stopped production in US.  It was quite expensive and cost $160 every month for script but it did the trick and eventually I went into remission for 3 years until November 2010. 

2.  As a substitute for Sansert my doc prescribed Methergine as it has many of the same compounds as Sansert and works well for Migraines with some success with clusters.  I decided to give it a shot as I did not have an alternative this time around as Sansert was now no longer manufactured in Canada.  The dose difference between the two is difficult to discern as the Sansert was 2 mg per day x 4 doses or 5 doses compared to .2 mg x 4day; I increased the dose to .4 mg x 4 day hoping to duplicate the dose and have been unsucessful.  Unfortunately the methergine properties are not similiar enough to work with my body chemistry.

3.  In an effort to supplement the methergine, doc also added 140mg of verpamil (did not want to go higher due to the high dose of methergine)

4. Also added periactin at bed (antihistamine) to try to avert the overnight clusters

So far this combination is not working and over the past week I have found that the clusters have increased in frequency, longevity and intensity.

Last night I stopped taking the periactin and lo and behold -- I had 2 clusters between 9:30 and 12:00, the last being only a "5" or so intesity and quite easily aborted with the 02 and I also got 5 hours of sleep .....the first time in weeks......

I do not know if the periactin/antihistamine was triggering the clusters but if I have a good night tonight I am going to think yes.

Also my initial diagnosis many many years back was with the Graham headace center at the Faulkner Hospital; my doc left that facility and I have been following her career and have remained her patient; she is now back at Graham and I remain her patient there.  She is innovative, progressive and willing to provide me with anything that may help.  She is quite interested in the "clusterbusters" treatment and has been following the literture on this and is familiar with the Boston connections.

I do not have a closed mind on this treatment nor any other treatment that works for any individual.  My fears are based upon my own limitations whether it be financial, emotional or presently physical.

I am struggling to balance all that I need to do to maintain my job, my family and my health.  Without sleep and relief from the relentless painful nights I am barely able to function now. 

To begin a new therapy takes time and effort and I worry about how I am going to be able to do it and what kind of effect it will have on me.  I am worried about what if I try it and doesn't work or makes me too sick to want to try again or I can't get out of bed to make to work or or or....

I know that the critcism is that if I want to be pain free from clusters then I must take that leap of faith -- but let me tell you that leap is hard for my life and the responsibilities and the complexities that come with it.

I will talk with thebzz over this weekend and hopefully he will help me come to terms with some of this and help me sort through the challenges that I could face.

I appreciate ALL of the feedback and all of the honesty that comes with it and please know that for ME it is difficult to accept change and the unknown but that does not mean that I am not willing to weigh out the pros and cons of any therapy that may help now or in my future.

I pray tonight is a good night for me and look forward to sharing with all of you my upcoming experiences.