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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> What A relief To Find This Board
        
(Message started by: serama1 on Feb 11^th, 2007, 11:59pm)

Title: What A relief To Find This Board
Post by serama1 on Feb 11^th, 2007, 11:59pm

Hi,
I can't begin to tell you what a relief it has been already to find this site and group. I thought my behavior during an episode was me "going crazy' from the pain , but here I find the pacing, the rocking chair, the head against the wall etc are a common thing I now know I can share with others.
I'm a middle aged man who has just ever had normal headaches over the years, that all changed, along with my daily life, during the 2006 Christmas holidays. I was struck with my first episode, which was followed by night after night of repeatedly being awoken during the night in sheer agony as well as throughout the day. Shortly after new year's I started an series of attacks that grew in their intensity to the point that I did not think I could take just one more bit of that torture, I ended up in the emergancy room where I was admitted as they though perhaps I had had a stroke or something. The first "Dr." that was assigned to me immediately just labled me as some sort of "looney case looking for free drugs"!!!! Fortunately my son happened to be walking up to the nurse's station and literally heard this Dr. saying that to the nurse...my son went ballistic and a new Dr. was assigned to me, the answer arrived in my room the next day when a nuerologist cam to talk to me, I explained my symptoms and the level of pain the best I could, he looked at me and said "this is all classic Cluster headaches." I had never heard of them until that day and came home from the hospital equipped with oxygen tanks, Imatrex, 2 weeks of Prednisone etc etc.
My episodes continue right now at anywhere from 4-6-8 in a 24 hour period and I am trying so hard to hang onto the hope that this cycle/series will soon end. Right now I am just grateful for any CH free period of the day or night. I am so afraid to lay down and go to sleep at night and when awake I walk around just hopig and praying one doesn't hit.
I'm really grateful for this message board as I no longer feel like I am alone in this or that I am some kind of freak.
Still much to learn about these CH's, but I'm hoping that the more educated I become about it the more active of a role I can take in managing and coping with this. It's ver frustrating that those around me, even though they might witness what I go through during an episode still dont seem to really understand.
Anyway, I'm glad I'm here now and THANK YOU so very very much to all of you who share your stories and tips for dealing with the pain etc.
Most Sincerely,
Lee

Title: Re: What A relief To Find This Board
Post by duckie on Feb 12^th, 2007, 3:40am

Hi Lee,

Hang in there mate, you are not alone anymore. You may find the link below helpful in letting family, work, friends etc know, learn and understand what you are going through. It says what I found hard to explain, confess to others... in case they thought i was a freak!

http://www.ouch-us.org/chgeneral/colleagueletter.htm

Welcome to you and your family and sending PF vibes your way!

Lii

Title: Re: What A relief To Find This Board
Post by TonyG1 on Feb 12^th, 2007, 8:42am

on 02/11/07 at 23:59:05, serama1 wrote:

...I had never heard of them until that day and came home from the hospital equipped with oxygen tanks, Imatrex, 2 weeks of Prednisone etc etc.

Hi Lee, so sorry you're having such a rough time of it. Aside from Prednisone, did the doc give you a preventative (i.e. Verapamil, topomax, etc.) ? -- The O2 and Trex are to abort the CH. Prednisone is a 'transitional' medication -- should give you a break while giving the preventive med a chance to start its work ... I've had these things for 20+ years and I would suggest you read, read, read on this board. Knowledge is power when it comes to this condition. Does you Neuro specialize in Headaches ??

I know it is difficult; however, try not to be discouraged. There are a number of us clusterheads that understand exactly what you're going through! Additionally, the condition can be managed.

Best Regards and wishing you pain free time,

Tony

Title: Re: What A relief To Find This Board
Post by serama1 on Feb 12^th, 2007, 9:36am

Hi
yes I am on Verpamil, he also prescibed Imitrex in pill, injectable and nasal spray form and for when it gets just too much to bear I also have morphine swabs/suckers, which I have yet to use one and @ $250 a pack I will only use it as an absolute last ditch "save my life" scenario, they are locked up and hope I don't ever feel I need to use them.
I've already begun the weaning off period with the Preds, thank God, what a not nice med to take.
He doesn't specialize in CH, but is experianced with them and very actively learns everything he can about them. He's made mention a couple of times to me of a place in Michigan I think called The Diamond Headache Clinic or something like that.
Management I think is key for me and I'm trying really really hard to keep a positive attitude, but as the days and nights with little to no sleep wear on I'm finding it more difficult to maintain my normal positive attitude...but I'll win out in the end :)

Title: Re: What A relief To Find This Board
Post by Mattrf on Feb 12^th, 2007, 11:17am

Hay Lee, I am so sorry that you are afflicted with CH but I am happy that you got properly diagnosed so fast and have a doctor that seem to know what to give you so you are properly armed for battle.
So many here had gone years being misdiagnosed and suffering before finding that doctor like yours that knows of CH so consider yourself lucky in that at least.
Pull up a chair Lee and read as much as you can and vent when you need to, you are among friends now that truly understand you pain.

Matt

Title: Re: What A relief To Find This Board
Post by RichardN on Feb 12^th, 2007, 12:05pm

Hi Lee and Welcome to Clusterville

When my wife found this site for me (2/02), after a year of tests (all normal of course), non-working meds and mis-diagnosis, I was having 6-8 attacks a day and sometimes 3-5 at night, Kip 5-9, 20-45 min and the occasional 1 1/2- 2 hr horror. This site and these wonderful people gave me a "name-for-the-pain" and the info/weopons to battle the beast. Though chronic, I have most of my life back. I can live with the beast as long as I don't have to "dance" with the bastard.

I have some arterie blockage, so can't take Imitrex . . . 02 is my only abortive and can usually kill an attack in minutes if used early-on in the attack. Did your doc specify 15 lpm regulator w/non-rebreather mask (the one with the bag)? Most here use 12-15 lpm . . . less is not nearly as effective. Also . . . since you already have the 02 script . . . acquire a Clustermasx . . . well worth the $25 and even more effective than the standard non-rebreather mask.

You may want to try Melatonin (OTC supplement found at drug/health stores). Most take 6-9 mg 45 min before bedtime. Can make you quite groggy . . . tis normal . . . but does help many with the frequency/intensity of night hits.

Don't discount the "water X 3" therapy. I'm absolutely convinced water therapy has helped me reduce the frequency/intensity of night hits. It takes a LOT of water.

You have much reading to do and many questions to ask. One of my favorite mottos on this board is, "Nothing works for everyone, but SOMETHING works for everyone" . . . . and here you have a very good chance of finding the "something" that works for you.

Identify your triggers. For most of us, alchohol is a major trigger when in cycle. I'm chronic and a real beer, shot of brandy or small glass of wine will bring on an attack within 10 min. Exhaust fumes, certain chemicals . . . we're all different.

An additional note on 02. Use at the first sign of an attack . . . MINUTES MATTER!

Glad your doc was so free with the 02 and Imitrex. Most here consider the pills virtually useless because they take too long to take effect . . . nasal spray perhaps slightly better. . . . but injectible Imitrex works in 5-7 min. (make sure you read the "imitrex tip" (link on left). Suggest you first use your 02 to abort, and if that doesn't kill him, go to the injectible Imitrex.

Be Safe, PFDANs

Richard

Title: Re: What A relief To Find This Board
Post by RichardN on Feb 12^th, 2007, 12:09pm

Slight correction to the above.

Meant to say that water therapy has helped me reduce the frequency/intensity of ATTACKS . . . not just night hits.

Richard

Title: Re: What A relief To Find This Board
Post by TonyG1 on Feb 14^th, 2007, 10:23pm

on 02/12/07 at 09:36:58, serama1 wrote:

Hi
yes I am on Verpamil, he also prescibed Imitrex in pill, injectable and nasal spray form and for when it gets just too much to bear I also have morphine swabs/suckers,

I've already begun the weaning off period with the Preds, thank God, what a not nice med to take.

Management I think is key for me and I'm trying really really hard to keep a positive attitude, but as the days and nights with little to no sleep wear on I'm finding it more difficult to maintain my normal positive attitude...but I'll win out in the end :)

Sounds like you're on the right track... don't know so much about the swabs / suckers as generally narcs don't touch CH. Oxygen works well for many as an abortive with a non-rebreather mask ( you might mention it to your doc) Prednisone can have some nasty side effects for some ppl -- I tolerate it ok, it is the coming off of it that is ugly for me...

The sleep deprivation does wear on you; however, as subsequent cycles and time passes the anxiety of "when is the next one gonna hit" sort of subsides. (It did for me anyway) I personally don't worry about the next one and deal with them as they come -- they will happen when they happen. What dosage of verap did the doc put you on ?

Title: Re: What A relief To Find This Board
Post by serama1 on Feb 15^th, 2007, 9:20pm

The first Verampamil was 24 OMG, the new prescrition reads
180 . Pred 20MG 4 tablets every morning, the O2 is at 6, which doesn't sound right according to what I've read here (?) He's also put me on Indocin 75 and of course the Imatrex.
I can tell you one ting, the injectabile Imatrex and even the nasal spray seem to offer the most immediate help.

Title: Re: What A relief To Find This Board
Post by thebbz on Feb 15^th, 2007, 9:29pm

Lee
welcome and you just have to check out CalOuch.
http://www.calouch.org/cgi-bin/yabb2/YaBB.pl?board=general
See the visitors thread. There's some links there..good reading
Conquering Headache by Dr Rappaport is a must read.
all the best
jb