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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> New to the site, not the headaches!
        
(Message started by: dacluster on Feb 14^th, 2006, 10:20am)

Title: New to the site, not the headaches!
Post by dacluster on Feb 14^th, 2006, 10:20am

My name is Dave. I have been suffering from CH's for about 15 years now, and I had just about given up hope of ever seeing a pain free day again. Back in 1990, I had been in an Army hospital getting knee surgury. In the process of a move from one gurney to another, the two female orderly's in charge of the move, dropped my 240 pound unconcious form on the floor. It was only made worse by the fact that the weaker of the two women was at the top half of my body, so you can guess which end of me hit the floor first! The Army denied this ever happened, but severly punished the both of them the same day, before I knew what had happened. Later, I thought that the moderately severe headach I was encountering was due to the bandage on the side of my head. Where did that come from? Anyway, my first day back at the barracks, I was sitting around , watching the tube, when my first full CH hit. I thought I was having a stroke, or something, so called for an ambulance. Back at the hospital, and 4 neurologists later, I was diagnosed with CH's. Now, I only have the services of nurse practitioners and PA's at the VA hospital, and they are all convinced that the Neurologists at the Army hospital were all wrong. Because of this, I get little to no support from the VA. I go through spurts of 4-6 CH's per day for two to three months, with rest periods where I only get one or two a day, between. Finding this site has supplied this old grunt with many new forms of information that may prove usefull. Thanks to all who have replied to my questions in other forums on this site!

Title: Re: New to the site, not the headaches!
Post by Dragnlance on Feb 14^th, 2006, 10:43am

Welcome, and sorry to hear you are a CH nut too.

From my point of view, it would be nice to at least know what caused these to start. It may not help, but when you have them all your life, it does go thru your mind.. what did I do to deserve this?

Thanks for posting and I am very glad to hear that this site has helped you as much as it has me.

Pain free wishes my friend

Dragnlance

Title: Re: New to the site, not the headaches!
Post by LeLimey on Feb 14^th, 2006, 10:45am

FWIW I don't think that fall caused them but itMAY have triggered them.. CH is caused by a dodgy hypothalamus so you were destined to have it my friend.
Welcome, I'm sorry you have to be here but since you have CH there is no better place to be
Regards
Helen

Title: Re: New to the site, not the headaches!
Post by dacluster on Feb 14^th, 2006, 10:54am

Helan,
You might be right! Come to think of it, I had this chinese doctor who is supposed to be the leader in the field, tell me that there might not be any one reason these things occure, but that I was destined to have them. Thanks for reminding me! Too bad he is not my doctor here, in sunny Idaho!
D!

Title: Re: New to the site, not the headaches!
Post by dacluster on Feb 14^th, 2006, 11:00am

Dragnlance,
Thanks, bunches! I just got a much needed reality check from LeLimey. I admit that I have had a chip on my shoulder for 15 years now, and i needed to remember that I once did have good medical council. Maybe I will get it again from a real doctor.
The support is much appreciated, and I am glad this site found me!
D!

Title: Re: New to the site, not the headaches!
Post by LeLimey on Feb 14^th, 2006, 11:22am

Hi again Dave. What meds are you on for CH? Have you tried o2? Lets see what we can do to improve your lot if we can!
Helen

Title: Re: New to the site, not the headaches!
Post by dacluster on Feb 14^th, 2006, 11:42am

The VA people gave me Atenalol at first, but this only worked a little and lowered my already low blood pressure too low, so they stopped it. Then they gave me Valproic acid, but it makes me sick to my stomach, and does not stop the headaches. I tried O2, but it made them worse. When the VA accused me of whining and stopped those, a PA begrudgingly gave me 800mg ibuprophen pills, and they only screwed up my stomach. The VA is no longer willing to acknowlage my CH's, because my current nurse practitioner has decided that CH's do not exist! Understand that I do not whine! I've been shot, stabbed, flattened, and had 9 major and 16 minor bones broken, and never been accused of whining before, so the fact that she did only indicates to me that they care more about quantity than quality. Where is that hipocratic (?) oath when you need it? Annyway, until I get real health insurance and a real doctor, I am doomed to not being able to afford any other treatments. I walk around in circles all night, and apply pressure to other parts of my body in an attempt to take the pain in the whole right side of my head away, to no success, and hope that my current employer gets around to starting an insurance program. Heck, I have been released from employment because of my headaches before. That is the trouble of living in a right to work state! Any reason, or no reason, at all! I treat my CH's like a prison sentance, and bask in the fact that this sentance cannot last forever! Glass is half full, don't you know. Any suggestions?
D!

Title: Re: New to the site, not the headaches!
Post by nani on Feb 14^th, 2006, 12:02pm

Hi D, be sure to look over the oxygen info link on the left. Proper delivery is the key to success.
Suggestions? Yes.
Have a look at all the threads contained in this thread:
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362

Read it all...and be mindful of your low BP should you decide to try it. It's cheap, OTC, and shows promise for many.
I use ice and Red Bull also. Some prefer heat, but it's a trigger for me. The RedBull should be slammed down at the first sign of a hit. I think someone else used Mt Dew MDX (or something like that) with the same result. Keep reading, there's a ton of info here for you.
pain free wishes, nani

Title: Re: New to the site, not the headaches!
Post by Linda_Howell on Feb 14^th, 2006, 2:02pm

Dave,

There are several people here who go through the VA for treatment. Kirk and Kathy come to mind. If they see this, they may be able to help you with the proper way around the system.

For what it's worth I don't think a fall of any kind gave you Clusters. It is caused by a deformed hypothalmus gland.

I will give Kathy a heads-up on your post.

Linda

Title: Re: New to the site, not the headaches!
Post by Guiseppi on Feb 14^th, 2006, 2:19pm

And while I certainly am not a mouthpiece for HMO's, nurse practitioners aren't all bad. I see one at Kaiser Hospital who actually listens to my input, and stays abreast of the latest in clusters. She only has two cluster patients, but to date, I have been unable to trip her up with any of the new stuff I find here on the board. I suspect she visits here now and then. I hope you stumble across one as caring and open minded as mine is.

Guiseppi

Title: Re: New to the site, not the headaches!
Post by Jasmyn on Feb 14^th, 2006, 4:06pm

Hi Dave and Welcome!

There are some good info on the left hand side. Hang in there and I hope you get some help soon.

At least you're not alone with this anymore, this site is great.

Title: Sorry you had to find us,
Post by Richr8 on Feb 14^th, 2006, 5:21pm

but glad that you did. After fourteen years with the beast myself, there is no better feeling than finally being around a bunch of folks who totally get it! As you know, you could explain all day what's going on with you and you always walk away with the sense that whomever you are speaking to doesn't really understand. Well, not here. I just found this place last month myself and found it to be a great resource for information, support, and sometimes just a look at the lighter side of things. Also, a great place to retreat after those night time hits because the lights are always on.
Again, glad that you found us and I am looking forward to hearing more from you.

Wishing you a bushel basket full of pf times.

Rich

P.S. I guess I'm glad I got out of the Navy before CH found me.

Title: Re: New to the site, not the headaches!
Post by kcopelin on Feb 14^th, 2006, 7:11pm

Dave,
Just got a call from Linda re: your post. I've had clusters since 1982, which means about 24 years. I get my care from the VA because 1. it is service connected-even though they didn't cause it (didn't drop me on my head-just sent me to Germany told me to don my gas mask and dive into a ditch full of snow :o) 2. I don't have any insurance.
I have found that with the VA you have to be assertive to the point of being obnoxious. Chances are you know alot more about cluster headaches than any doc you'll see. I printed alot of the info on the left, made copies, and take that along when I go to the VA hospital in Sacramento. Locally, my provider has been very good about listening to me, she respects an informed patient. The VA hospital, on the other hand,**&&^%%$%^. Last visit, for my neurology appointment, I met with a psychiatry resident (GMAFB) who suggested yoga and accupunture. Then, I saw a Neurologist for 5 seconds, he prescribed naprosyn and accupuncture-it was the first time that I have been unable to get them to listen to me. I feel your pain brother.
My advice, get a binder, fill it with copies of the info on the left here, take it with you. If they won't listen...and this is going to seem extreme but it worked for me when I finally got them to Rx O2...request that they give you nitroglycerin as that almost always triggers a cluster. You explain that perhaps if they can witness your headbanging, drippy nostril, teary eye, rage they will understand that you are indeed not a sniveling wimp, but a human being surviving one of the most painful conditions imaginable. PM me anytime...
PFDAN to you Dave,
and thanks for serving!
Kathy

Title: Re: New to the site, not the headaches!
Post by burnt-toast on Feb 14^th, 2006, 10:50pm

Welcome aboard Dave. I hope you can find some good information and support here - I have.

One piece of advise I like to give is keeping a good headache journal - makes communicating specific symptoms to docs. much easier and also help track the effectiveness of any treatments/meds.

Best Wishes

Tom

Title: Re: New to the site, not the headaches!
Post by RBrown on Feb 22^nd, 2006, 1:43pm

My name is Bob and I have had CH's for about 20 years, since my early 20's. About the last 6 or 7 years I have dealt with them reactively with Imitrex injections. The injections effectively abort the headache, which is a great help. I wanted to share the fact that I recently went to a headache specialist named Dr. Kriegler at the Cleveland Clinic. She was involved in the development of Imitrex. As a result of the appt. I have been on a medication called DHE (dihydroergotamine), given via an I.V. initially and then for 9 days using a small electronic pump and a tiny needle under the skin.

Prior to the DHE I was getting CH's every day for weeks; since the I.V. only 2 mild versions of CH's in about two weeks. I have a followup appt coming up and apparently there are many options for prevention at the onset of a cycle. I will post more information as I find out, but would highly recommend the Cleveland Clinic.