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??

30 years? Aren't you getting tired of the same ol' shit that doesn't work?

clusterbusters.clusterheadaches.com

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

Jeannie

Clusterbusters.com has had a great success rate....I have not gone that route...yet! ;) But the success stories they have been cranking out are a little hard to argue with.

I use lithium as my prevent, takes about 10 days to take effect for me. Have you tried melatonin to ease the night hits? Many can avoid the wake up hits by taking it 30 minutes before bedtime. Start with 9 mg, you may have to adjust the dose up or down.

Joe

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

30 years? Aren't you getting tired of the same ol' shit that doesn't work?clusterbusters.clusterheadaches.com

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

Please tell us where you live. Follow the next line to a message which will guide you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you
You can add your location by editing your profile. CP Member --> profile

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.
 

[smiley=hug.gif] Tough place to be in, hang in there.

Joe

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

Quote:

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

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

Okay thebzz I will give you a call this weekend and maybe you can show me the way ... can't stop the nerves -- I am an old lady and dealing with this for a long long time -- "side effects" is my middle name and I can't deal with torturing myself anymore -- I have been around the bend quite a few times with clusters and know that the older I get the harder is deal with the pain so maybe you can convince me....we'll see :)

Your on old lady! :P 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

Thanks for your help...talk to you over the w/e!

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.

Hey Brew -- that's a funny but so true -- yes I do remember those days, those drugs, those years ....

very scary that I am even considering anything along those lines -- what is it with clusters that make you so desparate that you just about eat poison to beat the damn suckers!

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.

Brew,

I wasn't talking about clusterbusters -- I was talking about all the prescribed meds that I have taken in such heavy doses over the years that have caused so many side effects and other problems -- all to stop the pain...

Take it easy ...I have enough stress

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

Take it easy ...I have enough stress

Perhaps you could explain this in a bit more detail.

I'm taking it extremely easy.

Brew,

I am having a very tough go this cycle -- on-going for 13 weeks and counting -- last night clusters started at 9:30 - on 02 for 35 minutes -- off til 10:30 then back on for 20 minutes -- relief until 12:15 then back on again for 15 minutes -- took my 1:00 AM does of methergine then rest until 2:30 back on 02 again for 15 minutes and 5:15 back on 02 again for 20 minutes then off to work I go -- suck down two huge mugs of tea (don't drink coffee) and then my 7:00 dose of methergine -- put in my 9 hours with another dose of methergine at 1:00 and home now dreading and dreading going to bed and dealing with this routine again now for 90th time when all I want to do is just go to sleep -- really is that too much to wish for.. I hate feeling this sick all the time, I hate watching the clock for my doses of meds, I hate that they don't work even though I force myself to take this and my stomach aches and my muscles ache and my mouth is dry and my nose is runny (also taking verapamil and periactin and lots and lots of execdrin migraine for the shadowing)............

I am discouraged, depressed and yes extremely stressed out.......!

Thanks for listening, I could go on and on -- I guess I better go back to just reading.......

Sorry for the long whine.............

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

I'm glad you're exploring 'busting...exploring (keep saying to yourself until you're comfortable with the idea) is the key. It puts you back in control. I am not trying to add to your stress, here...God knows (literally) we've been put through so much and you have as well...but may I ask a couple of questions?

You live in Boston, or thereabouts. I live in MA as well. I didn't find anyone knowledgable about CHs until I went to the John R. Graham Headache Inst at Falkner Hospital. The
Director is Dr Paul Rizzoli. He's very businesslike, very informed, he teaches at Harvard Med, and he's aggressive. Consider getting an appointment there?

Second question, no stress, breathe deep...safe place, safe place....I also "tried" everything but the dose levels were nowhere near where I needed to be for Clusters. We often find for example that levels of Verapamil for CHs can be in a range from 240mg/day up to 960mgs/day. Much, much more than label dosage for high BP. This seems to be true across the board.

Anyway, just some wondering to go along with feeling bad for you, and praying for you. God bless! lance

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

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'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

There are more mild forms of busting that one can start with if the idea scares you.    Rivea Corymbosa.

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.

And believe it or not, Sansert is a busting method as well. It is derived from an ergot alkaloid, which is a fungus grown on corn. The problem with it, compared to straight up busting with seeds or fungus, is that they have chemically altered it so that you have to take it every day. With plain old busting, you wait 5 days between doses until you feel as though you can start to space the doses out. Many of us get to the point where we can maintain pain-free status by busting once every six months.

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.

You certainly have a positive attitude, despite the challenges that are being thrown in front of you. Keep that and you will eventually find what works.

And don't hesitate to ask for that script for methysergide maleate. It should be covered by insurance.

Hi Brew,

It is amazing what a good night's rest will do ...!  I am interested in your thoughts on having the sansert compounded in a local pharmacy -- do you really think insurance will pay for it?? Never thought of that - next MD appt is 3/3 and I intend on exploring this issue and connecting with her Boston contacts on "busting"...

AND in the meantime I am going to gather as much info as possible on all the alternative treatments suggested on clusterbusters but I need to take the time to sort it all out and clearly focus on what is available.

Take care and please continue to share any thought or comment as you never know which one will truly alter the path of another.

Dawn

bostondawn wrote on Feb 10^th, 2011 at 7:21pm:

share any thought or comment as you never know which one will truly alter the path of another. Dawn

No Dawn, you never know?

Respect

Gary

I can only speak from personal experience, but for the couple of years I took it, my insurance paid for it. Since it is a compounded substance, it was in the highest copayment category, but I think it cost me $30/month (my plan at the time was $5/10/30, or something like that). If I had paid retail, it would have been far more than that.

I pray many and all nights are good and pain free. Sounds like you are on the right track so just keep us in the loop. We really do care. Blessings. lance

Okay, here's an ugly update; woke up this AM with excrutiating pain in lower right back radiating into right hip and abdomen; chills fever and excessive vomiting -- thought maybe appendicitis did not know; thought I needed an ambulance as I could not even walk from bed to bathroom -- went to ER with husband - not appendicitis - told to stop the methergine (cold turkey) and sent home with some discussion to call MD and maybe "a stone"...

Finally around 3:00 this afteroon vomitting stopped, pain stopped BUT had gross hematuria --- all typical signs of passing a stone as I am told by the on-call Neuro that I called at my MD office

Well what now, is it the drugs (methergine/verapmil/excedrin) or just a common "stone' or what ...

like dealing with the clusters is not enough...

any thoughts?? anyone else ever have this side effect or experience?

Given your excellent health provider and experience with her I'll write this suggestion off as sharing your desperation.

But--has she considered that it's not Cluster? I know; sounds nuts--but see....

Look under: Medications,  Treatments,  Therapies › Important Topics >Cluster-LIKE headache

This is a series of abstracts I've been collecting for a time which points to multiple other disorders which appear to be Cluster but which are not. ONE of the indicators is that the meds used for CH don't work or work inconsistently when you have a "sleeper" disorder.

Might print this info and ask whether it's worth reconsidering your medical picture....

All I can is Oh my God..........................read your posts and abstracts and all I can say is -- please do not let it be any of those things --

I have been tested, MRIed, CatScaned, blood work, ekgs etc over the years to check and double check for other diseases and it always came back to typical cluster headache disease..

My problem has always always been that with almost every drug given to me I have experience severe side effects some of course more serious than others but in my 20s and 30s I was inpatient every other month for something as the high dosages used to prevent clusters just wrecked havoc on my body chemistry.

My current routine (only on for 30 days) is the first time ever for methergine and adding in the small dose of verapmil --

apparently not working - clusters not controlled and now this "kidney stone" .. mind you I have no idea if one is related to the other but I have never had this happen before and with my bad history of drugs/side effects I do predict it is one of the drugs or the entire combo..

of course the older I get the more likely I am to develop any one of the cardio/vascular/ diseases as I am a smoker and excessive users of excedrin-migraine............

You know I want to get to the bottom of it and I know my MD will but the process, the tests, the time necessary and needed to figure it out -- all of this and still work -- are u kidding -- more than likely I will lose my job and then my house (won't be able to keep up with the mortgage...)

Sounds dramatic I know -- but my experiences have taught me that medical issues and treatment can easily cause these snowball effects............

I am going to get the Sansert compouned (or try) as suggested by Brew and when I am back feeling good and in more control of the clusters, I am going to put everything else on hold and find some natural alternatives..

Today was God-awful and I am really worried that it is something more serious (kidney failure or serious cardio disease)...

As one of the replies stated in your post -- "there are definitely worse diagnoses than clusterheadaches"

Thanks for the information -- I absolutely do intend on discussing all of this with MD and have already emailed her!

Dawn

Quote:

You know I want to get to the bottom of it and I know my MD will but the process, the tests, the time necessary and needed to figure it out -- all of this and still work -- are u kidding -- more than likely I will lose my job and then my house (won't be able to keep up with the mortgage...)

While your waiting to talk to your doc, let me simply suggest that you try to change your perspective a little. There are many here - some of whom are chronic and have been for many, many years - who have decided to meet this thing head on and do what it takes to deal with it. They hold down jobs, pay the mortgage, hug their kids, go out to eat, even make love to their spouses. It can be done. But it takes a positive attitude. One that says, "I am the one who wins here. Despite CH's best efforts to the contrary, I'm better than it. I'm smarter, and I have a support group that is full of information."

Here's a place to start. Go to the following link, print off however many copies you need, and give the first one to your boss. Ask him or her to read it, then offer to discuss with them on your own time.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Brew you are right; absolutely right -- I WILL stay positive and try not to let my mind wander over to all the negative what-ifs!!

Thanks for the reminder.
Dawn

No problem. I've been where you're at right now. Gentle reminders never hurt.

"I am the one who wins here."

I missed your call, however the conversation would have been similar to the above. Scary Brew! More information is all you need, and headbanger buddies.
the bb
offers still there

thebzz,

Yes, I missed the call - too busy passing a kidney stone; once I figure this mess out (number of tests to perform) I'll be in touch ....

Yes, this forum for many years has always "calmed" me down and helps me keep things in prespective --

Thanks to all!

Hopefully my next post will be some good things -- (fingers crossed)

Happy Valentines Day -- hope tonight is a good night for all my fellow clusterheads (headbangers!)

Take care,
Dawn

4 years ago I finally found the doctor that understood what we all go through. Zahid Akram is a neurologist in Hermitage Pennsylvania that has literally saved my life. I have suffered with this menace for 25+ years and was refered to him by my family doctor.  My therapy only when the beast arises is verapamil and prednisone with a script for Zomig nasal spray. Until the first 2 meds bust the cycle the Zomig allows me to sleep through the night. I know this does not work for some of you but it does for me at least for now but we all know that the "devil" never will release his grip on you. But the last 2 episodes in 4 years have been eliminated with this therapy I know when I can stop the verapamil just by the way I feel.  This episode and the last one took about 6 weeks to totally abort and I was PF for 2 years until about a month and a half ago. In therapy now and have been PF for 5 nights and days. Prednisone makes me eat like a horse but I'll put up with a little weight gain to be PF.
I love talking to this doctor and  he enjoys listening to me and sharing the stories of some of you on here. He knows my knowledge of this beast is more than most doctors know about it.  By the way the Zomig works for me in about 2 mins after onset. My only problem with it is the insurance company feels you only need 6 doses a month (idiots) I wish the CEO's of the drug companies and insurance companies suffered with these headaches they would be giving the medicine away if they did.
Just putting this out there for all may you all have PF days and nights!!! :)

Great you found a therapy that works for you! I assume you stock pile the zomig off cycle! ;) What's the effective dosing of verapamil for you?

Joe

Guiseppi wrote on Feb 14^th, 2011 at 11:01pm:

Great you found a therapy that works for you! I assume you stock pile the zomig off cycle! ;) What's the effective dosing of verapamil for you? Joe

Well Joe you are right I will stockpile when out of cycle had the last batch for 2 years. Right now I am on 2 verapamil in morning and 2 in the evening 125 mg each I get some shadows but those are nothing. I posted on here a couple of years ago that I accidentally found a way to abort the attacks at night. One night while at my wits end with the pain I took off out my back door running around my yard after I stopped and was breathing heavy and my heart pounding the pain went away. This works for me its just a temporary abortive as the pain will come back in a few hours but I would run in between attacks sometimes 6 times a night until I found Zomig.  My doctor recently gave me a sample of imitrex nitrogen injection. no needle works kind of like an epi-pen just push it against your side and the nitrogen blasts it in your system pain went away in about a minute. I guess I am one of the fortunate ones on here that I have found relief for now. I wish my therapy worked for everyone that suffers from these bastiches. PF nights and days to ya :)

I'm not saying this is a great idea...or even that you ought to try it...but...when I found a knowledgable and sympathetic neuro, he understood the limitations insurance companies place on things like zomig, imitrex, migranal, etc. So...he prescribed one of them, knowing full well I was also filling a Rx from another doc for a different one. I now have imitrex (stockpiling) and migranal nasal spray, with the strict understanding to not take them within 24 hours of each other. It keeps the arsenal full. Just a word. Blessings. lance