Hello All,
I've made a few post recently and still trying to wrap my brain (no pun intended) around all this. Briefly, I had migraines for as long as I can remember. Spent a couple of decades on Verapamil. Ten years ago was tapered from this and have been asymptomatic since then; with the exception of some memory loss and cognitive issues which started two years ago.
In January of this year I had an episode that resembled a cross between a stroke and and MI; admitted to the hospital with arrhythmia, glucose issues, blood clotting issues, thermal issues, etc etc. We tested everything but couldn't find the "cause"; wonder if it was the hypothalamus going haywire;you think?
So in May, I started having these brain attacks with all the CH symptoms. The neuro started right away on triptans and steroids.  First two didn't work; but started on Depakote and still on 5 mg pred (started on 60mg) and it is working so far. No attacks since Sunday. So my question is ... is it even remotely possible that I am done with this for a while? Is it possible that my cycle is  10 years since that is when I initially stopped taking the Verapamil for the miraines? Or, God help me, is this just the beginning....  lib

No way to know because we are all so different. Most typical is 2 cycles per year, for 2 to 10 weeks per cycle. Read, read, and then read more while you are pf. My advice would be to get O2 and "proper" equipment (you can read about it here at oxygen info), and be prepared. There are also alternative methods of busting a cycle or preventing the next. you will find info at clusterbusters.com. Jay

These are the kinds of questions which, while understandable why you would ask them, are beyond the knowledge of medicine to answer (my best guess <bg>).

Some unknown philosopher type said that, "WHY?" is the most painful word in the English language."

We are at the level of knowledge with CH that it has only been in the last few years (5-ish??) that the source of them has been more-or-less identified but we have not moved, yet, to the HOW.

If there is a common theme of many of our writings here it's--1. know what works for you and use the program faithfully, 2. patience and good coping skills are essential.

In one line: "Never make forecasts, especially about the future."

                               -Samuel Goldwyn

Thanks for the replies! I guess the most painful word "why" matches this most painful disease. I checked out the O2 options and have the prescriptions; stopped by the place and they thought  I was a nut looking for 15-25 lpm.  They don't have a regulator, which I can get myself, but they were talking about hooking up two giant tanks with a splitter or something and then they wouldn't last very long.... etc., etc., etc., blah blah. They called around a few places; no one has ever heard of it...  You know, the pred, Depakote, and  MaxAlt are working for me right now so maybe when I rediscover my patience I will try again.  I've read just about everything I can get my hands on and enlightened my husband to the saturation point. I guess I'm just looking for the historical components of people who actually suffer with this; when did it start, how did it start, were there any tell tale signs like migraines or memory loss, where the cycles very far apart initially, how often are they now, did you find the pain greater in the beginning or less severe and then they progressed (God help me)? I know everyones' experience and reaction to treatment is different... guess I' m just looking for some hope.  There's not that much out there on personal experience so thank GOD for this site!  lib

There's lots of hope! ;)

Just not of getting your questions answered. Mine started at 18, very mild, sporadic hits, no discernable cycles. Not even diagnosed until early 20's. Then for about 20 years my cycles were like clockwork, 2X a year 8-12 weeks with 2 hits a day. Then hit mid 40's and they bounced all over the place again.

Which is  a long way of making Bob's point. Figure out what works for you, enjoy your pain free times but always have the meds ready.

As far as oxygen. They're thinking you're a COPD patient who is planning on running your 02 at 15-25 LPM 24/7. Explain that this is a condition that hits up to a couple times a day and there's a good probability you'll only be on it 10-20 minutes at a time. I use E tanks and keep 8 in the house at a time. If you find you use more you can always step up to the M tanks.

Joe

Hey Joe,
Thanks for the reply.  You are right, i had to explain why i was looking for the O2 at a higher lpm. Then some person in the office said, "yes, I've heard of those, women are always looking for relief..." I replied "really, that's odd, only .1 percent of the population has these and more of them are men not women, i find it unusual that this small town in Mississippi is so afflicted... "  at this point my husband gently nudged my arm and I quickly got the hint. So, when I say, "when my patience returns", I'll try the O2 run again, this is what I'm dealing with. My husband is a God send; he keeps me on track and defends other poor helpless humans when I begin to rant.  I even think the neurologist is happier when he attends my appointments!  LOL  Thank you for sharing your history with me; it really helps to know how the process begins and morphs with others.  I don't feel so lonely in my quest for answers.  Thanks!  lib

Hi Lib.  Lots of questions that we won't really have the answer to.  Sorry, but over time you will figure it out.  If you are a classic cluster'er it will become apparent over the next few years.  I started mine at 18 and I do the cycle every year or 2 ever since (not as much now because I found some medicine that seems to push the cycle a few months into the future and then push it again etc etc).

I believe that I am now at a point where I can manage the pain well enough that I no longer feel 'cursed' by the clusters, just another bump in the road to manage.  So don't fret too bad if you are developing them, at least you will know what they are and we can tell you all of our pain secrets.  1 or more of our techniques should work, but it is sometimes painful figuring it out. 

After 26 years I am finally calm, not frustrated by the condition.

Many options, you decide what is right for you and what the most effective will be.  Everyone here can help with pharmaceuticals and dosages.  Go to START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE for the 'alternative' meds (almost all happy customers over there). 

Also use oxygen and caffeine as recommended on this site, works for most.

Good luck and all you answers can be found by reading through some of the threads and hearing about others' experience.  We are mostly similar to each other. :)

--Shaggy :D

Thanks for the encouragement Shaggy! I have found now that I know (sort of) what it is and that there is a little magic pill (MaxAlt) that is working as an abortive, the Depakote is working, and we'll see about Verapamil, I don't feel quite as helpless. I'll try to get the O2 again to see if it works for me; just need to go to another town to get it! LOL  You know, it was much easier when I got it for my dog... I'll just call the vet and have him send it over; I'll just modify the mask?  LOL  I feel my humor coming back!  Thanks for the info... lib

If you think it might help, go to the oxygen info link on the left, and print out some of the literature. It helps to have the published studies showing how effective 02 therapy is. That way when the pot bellied, sweat stained warehouse foreman, with absolutely NO medical training, tries to tell you how to use oxygen, you'll have something to refer to so's you can get what you need. Has really been an amazing abortive for me.

Joe

Hi Lib,

I don't have much more to add to what has already been said.  Pleased to hear that your sense of humour is returning - that helps a lot!  CH can be managed and it looks like you're on the right track.  I have educated my 02 supplier and now they are pretty good at just handing it over and not giving me strange looks.

Wishin' you all the best,

Kate

lib wrote on Jul 18^th, 2010 at 7:17pm:

i find it unusual that this small town in Mississippi is so afflicted...

Hey Lib. Started at 35 and they were episodic, twice a year for about 3 months. Kip 8 the whole time. Three years ago went chronic, Kip 8-9 the whole time. Now I am in a period where I can go a couple of days without a hit, and even then can abort with high flow O2 and Monster energy drinks.

You don't say where you are in MS, but there may be others near you who have found an O2 supplier. I know there are several around my small town in Attleboro and that has helped since I am not the only one asking.

Good luck, and God bless! lance

Hi lib,  Mine started in my mid-30's I really didn't know what was going on and because the cycles didn't last all that long I didn't get a diagnosis.  In my 40's they became both more frequent and intense.  I sought medical help and was ultimately diagnosed with cluster headaches 4 years ago. Two years ago my condition went chronic.  I'm one that pretty much deals with the condition exclusively with O2 (I do take Maxalt when traveling for work).  Anyway, I understand the Mississippi situation as well.  I'm located in Vicksburg and finally ended up just asking the O2 provider to simply provide the O2 tanks and I would take care of the rest of it.  I bought my own 0-25 LMP regulator and mask set up.  Send me a PM if I can help you out in anyway.  If you are near Vicksburg I'll hook you up with my O2 provider.

Mark

Hi Everyone,n't have a hit though.  I call that success!!!
Thanks for the replies and history of your conditions. Mark, I live in Northern MS just outside Memphis, and I work in Memphis. I think I've just decided to order two tanks and just buy the non rebreather and regulator on line. I really want to try the O2. I did try the Melatonin and it completely zonked me out..didn't have a hit though... I call that success!!!

Does anyone out there have spinal cord compression issues as well?  I have progressive compression between C5 and C7.  It's been worsening for the past decade or so.

Thanks to all,  lib

Hi Lib
Started at 19 chronic for 10 years I'm now 47 and they are episodic for the most part. Sometimes I have a bad year where the cycle just never ends. Thank god for the O2 I have Imitrex but stop using it because I already had high blood pressure and the trex made me feel like I was going to stroke out. The neuro had me on prednisone, but the first session didn't break the cycle and midway during the second cycle I quit the prednisone because it had me feeling terrible. Try ginger tea and honey before bed time and in the morning. It does help me out about 35 - 40 % of the time.

Hi Dana,
Thanks for the suggestion; I'll try that tomorrow, I already took 1/4 melatonin for tonight. I think this is my first cycle so I really don't know what is going to work. I've tapered the pred to 5 mg every other day and have stopped the Depakote this week; so far so good. I have been having some shadows (I think); don't really know much about that either.... it is just some pressure, no pain, and my lip on the affected side keeps twitching.  I go to the neuro on Friday but he really likes the Imitrex which I have not tried.  I may just take the advice from the veterans here and keep a stockpile of whatever I can get and try to get on the O2. The neuro already wrote the script based on the info I printed out so I am good there, just need to find the regulator. Thanks for the advice!  Blessings, lib

Hey Lib, while you're looking into regulators check out the demand flow valves. They hook onto the regulator via a DISS connector and can deliver extremely high flow rates upon intake of breath, or if you need some help inhaling deeply, just push the button. It can cut down on your O2 use, too, since no O2 escapes between breaths. Just a thought. I love my demand flow valve! Blessings. lance

Hi Lance,
Thanks for the advice on the regulator.  I don't know that much about DISS but will get the hubby to help; right now he has his hands full with me ranting about this whole situation! LOL LOL Poor guy, guess he just didn't realize what he was getting into with me!  I'm glad I can use my pred as an excuse to fly off the handle once in a while! LOL  I am generally a kind, patient person, I work in a children's hospital and depend on my humor and good nature to get me through most days; this condition has really thrown me off course and the prednisone is not helping my mood at all.  I'll finish that this week as well as the Depakote so we will see what happens.  Thanks for the help; this is such a great group!  lib

It is and you're welcome. Be sure to stick around and help others, especially supporters. God bless. lance

Absolutely, i will. Thanks!

Hey Lib,

Everytime I have an episode I ask myself every day will it be just like the last time.  For 25 years it has been the same.  4-6 cycles every 4 years.  I am one of the lucky ones that goes years in between cycles and sometimes I forget about them all together but they always come back to remind me.  Good luck, and hope it's another 10 years for you.

B. Sanders

Hi B,
Thanks for the encouragement!  I am hoping for a pain free decade as well but with all the information I have gotten from this site and more important, the support of the this kind caring group, if it doesn’t happen for me I know I have what I need to get through.  For now, I am off all drugs except the verapamil.  I was on this drug for decades so maybe it will work again.  I think I am having some shadows but I’m not sure; maybe if I don’t think about it too much, it won’t happen.  LOL!  Thanks for the support! lib