Hello!

I am new to this site, but not new to the pain.  I've been suffering from the "Beast" for about 15 to 16 years now.  It took me 12 to 13 years to find a doctor to diagnose me correctly.  My old GP diagnosed me with migraine as did a neuro.  I was prescribed pain meds, Imitrex, all the standard migraine meds.  Needless to say, they never worked and apparently my doctors never worked to find answers for me, or did not listen to all my symptoms, especially the symptom of waking up after falling asleep to the most horrible pain anyone could imagine.

I went to the ER about three years ago.  The "doctor" on staff told me he was going to refuse me treatment because I was there a week earlier, and he thought I was seeking pain pills.  I proceeded to scream at him, at the top of my lungs, that he was an incompetent doctor and asked him if I could take a hot poker and stick him in the head with it while he was sleeping and continue to do so for about 3 hours, non stop.  God put an Angel on staff as a nurse that night.  She realized I was not faking my pain and was able to get me some relief, in the form of dilaudid (sp. ?) and the name of a headache clinic in my area.

About a week later, I was diagnosed with cluster.  I was glad my pain had a name and possible treatment.  I've been on Verapimil for preventative treatment (works ok, attacks are not as painful) and other traditional abortives.  Oxygen works well, about 85-90% of the time.  Methergine and steriod will "hold" the cycle for a few days, but when they wear off it's like all those headaches the meds put off came back at once!!!

I've done research on these bad boys and just started a Magnesium supplement 2x a day, 5-HTP supplement 1x a day, and lots of water.  I've been in cycle for 5 weeks and will try anything at this point!!!

I am so glad I've found such a great place in this site and people who understand what the pain and despair.

Welcome Laura!  I'm a supporter, not a clusterhead, but I hang around here to offer the other side of the coin, as it were.

There will be someone along shortly who will help you with anything you need.  I hope you have a supporter of your own to help you along your journey with the beast.  Please send him or her to ch.com.  We support supporters, too!

Welcome home! I've been on a magnesium supplement for many years and am convinced it's reduced the severity of my attacks. Many others on the board have posted similar results. (Add a calcium supplement, especially as a female, magnesium leeches calcium outta your system)

I get the same result from prednisone. Provides a 100% block of CH, but when I go off, it comes right back and makes up for its lost time with a vengeance! Now I just use the pred for a 10 day burst while I'm waiting for my preventative, lithium, to kick in. Hoping you slip into some pain free time soon.

Guiseppi

Laura,

A bunch of us are getting together in January in St. Louis. Since you live near Chicago, maybe you might want to meet a bunch of clusterheads. Info is down at the bottom of the main forum page.

Laura,

If you decide to go to the get-together like Jimi suggests, I guarantee you won't regret it.   The group that is going to be there are a wealth of knowledge and not just about setting you up for 02.  They can really help you not feel so alone and truly understand.

Be preparred for hugs as well as info as well as fun and laughing your head off.

    Oh, and welcome.   Linda

Hello. I am also new to the site but have been dealing with CH for about 6 years.  At first, I thought this was a sinus thing because of the congestion that accompanied these attacks.  I had broken my nose a number of times and I thought that this was the root cause.  Several doctors and a couple sinus procedures and still they came.  The CT scan showed nothing (my wife laughs when I say that) MRI's, nothing.  No one had the slightest clue why I was having these ever increasingly, ridulously painful headaches on one side of my head.  The right eye would get all bloodshot and droopy and afterwards you would be just wiped out.   All these dr's kept saying that these are migraine headaches but I had none of the migraine characteristic symptoms (nausea, halo-ing, etc).  Tried Imitrex inhalers, didn't work at all for me, just that terrible taste in the mouth.  Started acupunture treatment when all else failed and I got sick of hearing these dr's that just didn't understand.  About a month in, month of May, I went into a remission that lasted up until two weeks ago.  Returned with a vengence (3-4 a day, 8-9's on a scale of ten)  My previous episodes usually lasted 30 mins to a couple of hours but in the last two days something really strange has happened.  I feel it coming on, resign myself to the fact that the next bit of time is going to suck BIG TIME and settle in for the ride.  The last two days, they start, last 15-20 mins and then totally disipate.  Only one per day and it's like I feel a little click right at the peak of fun and it starts going away.  Anyone else have input on this?  I was thinking that perhaps these started back up again due to the changing of the seasons, light/dark cycles etc.  I am hoping that I drop back into a remission period but that may be a little too much to ask.  I live in the central Maine area and would love to hear from others in the area that I could get their input in person.

Hi . . . glad you found us

. . . and Welcome to your new home.

   Be Safe,   PFDANs

     Richard

Thanks for the invite, Jimi!!  I plan on attending.

I go through Walgreens to get my tanks and was told the tanks I am receiving are the largest they carry(?)  I will definitely look into this.

I think my cycle is coming to an end. Gotta keep the faith!!  I was up from 9:33 p.m. until 3:56 a.m.  Not sure if it was the same ch that kept coming back or 5 different ones.  But let me ask you all this question.  Does anyone get extremely warm or hot as an attack is coming on and then freezing cold when it ends?  I looked this up and it seems the hypothalmus part of the brain controls body temp, aggression (which I have often with my ch), seritonin, and other chemicals/hormones in the body.  Researchers say that the hypothalmus part of clusterheads brains are abnormal.  This makes the testosterone idea seem valid to me.

As for the RC seeds, I will definitely try them, try anything.  I go my headache doctor every 6 months and my next appointment is in April.  I plan on keep a binder of the research, supplements I've taken, a headache diary, etc. to bring with me.  Hopefully, if I go in the office as educated on the subject as possible, doc will take me seriously and test my hormone levels in April and then again when the cycle hits. 

Quote:


WALGREENS?  No wonder you're only getting the teeny ones!   Since you already have a prescription for the 02 it shouldn't be a problem getting it switched to another place.

In your area phone book, under oxygen suppliers, look up Apria or Lincare.   Both these suppliers are nation-wide and should be able to set you up with E-tanks as well as transferring your script to them.

George;
I hope you are right.  As far as the Ice Pick thing, I'll try and pay attention at the next one but as a rule, I get that sensation pretty much throughout the "event".   I have been working on this relaxation exercise when I have been attacked recently in which you really focus on relaxing the facial muscles as best you can and it really seems to diminish those big spikes that someone seems to be driving into my temple.  I know, easier said than done under those circumstances, but it really does seem to help even out the blinding stabs.  I had an event last night and as I lay in the dark working on this exercise, I did notice in my right eye, these little bursts of light which was kinda neat.  I don't remember being in the total darkness as I was last night  during one of these things.  Maybe this goes on all the time and I just haven't noticed before.

Laura, is it Walgreens Medical supply?  If it is, that's where I get my M60 tanks from.

Anyway, hope your cycle is ending!

mel

Alot of us get hit in the winter. If it helps laura, just think of it as a seasonal diet. I call it my CH diet. Welcome and you really should go to the big houdy in St. Louis, you'll be glad you did.
the bb