Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        Cluster Headache Help and Support >> Cluster Headache Specific >> Newbie Post
        
(Message started by: chacre2 on Jun 23^rd, 2006, 7:05am)

Title: Newbie Post
Post by chacre2 on Jun 23^rd, 2006, 7:05am

I have somehow survived this GOD awful pain for 23 years now. I have been to see many MD's and experts and you can imagine how many different types and combinations of med's I've taken. I am diagnosed as chronic CHacre and have atleast one everyday.

My latest MD says I have developed TMJ. probably as a result of the head banging I guess, and wants me to go to a physical therapist for treatment. My dentist says my teeth are fine but fitted me with something to help stop clinching. MD also says I have some arthritis in my neck and shoulders that also can act as a trigger.

Can anyone provide any insight?

Title: Re: Newbie Post
Post by BarbaraD on Jun 23^rd, 2006, 7:15am

The arthritis in your neck may be producing arthritic migraines (mine did). Aleeve helps them (might try it). They start off like CH, but the Aleeve will stop them (2 pills are the same as the script for naproxyn). If I let them go too long I get the nauseau and all the other stuff of migraines.

I've been chronic since 98, so I feel for you.

Melatonin at night (6-12 mg) usually helps me sleep and keeps the exhaustion at bay. O2 and caffeine (coffee or Red Bull) will usually abort a CH if I get it before I get over a 5.

There's a theory going around right now about low blood sugar causing attacks, so eat regularly (protein).

Wear your retainer at night for the TMJ - it probably doesn't help a lot.

Hope you get some releif soon...

Hugs BD

Title: Re: Newbie Post
Post by Charlotte on Jun 23^rd, 2006, 1:49pm

I actually got some relief from the mouthguard, not for ch but from the pain from clenching. It retrained my jaw muscles so that they did not shut all the way. I only use it when I find myself clenching, and just until the muscles are re-trained.

Anything extra is bad, but the ch is an entity of it's own. Arthritis is another thing. It will be good for you as a whole person to address these issues, but the ch needs to be addressed also.

Have you tried O2? Many people here get some relief with that.

I'm chronic also, and it takes everything I've got to get through this. The people here mean a lot to me. They make the difference.

Charlotte

Title: Re: Newbie Post
Post by chacre2 on Jun 24^th, 2006, 12:41am

Thanks for the advice. ;;D
Sorry it has taken so long to reply. Saw the beast six times today.
MD has never mentioned arthritic migraine.

I started first on Verapimil and o2. Never really helped much then or now. I follow a strict diet. Meds now are Relafen, Nabumatone, Rozerem and Lyrica.

Again....Thanks for listening

Title: Re: Newbie Post
Post by LeLimey on Jun 24^th, 2006, 5:17am

We'll always listen here Chacre, and we'll at least lend a sympathetic ear and try to makeyou smile when we don't know anything about what you're asking.
I don't know a thing about TMJ but I know other sufferers here do, unfortunately you've asked at the weekend and a lot of people access here from work so it might take a couple of days to get some more replies.. but you will!
In the meantime join in on the other boards, there's no where quite like here :)
Helen

Title: Re: Newbie Post
Post by Bob_Johnson on Jun 24^th, 2006, 8:38am

J Headache Pain. 2005 Oct;6(5):417-9. Epub 2005 Aug 1.

Warfarin as a therapeutic option in the control of chronic cluster headache: a report of three cases.

Kowacs PA, Piovesan EJ, de Campos RW, Lange MC, Zetola VF, Werneck LC.

Headache Section, Neurology Division, Internal Medicine Department, Hospital de Clinicas, Universidade Federal do Parana, Rua General Carneiro 181/1236, 80060-900 Curitiba, Brazil. cefaleia@hc.ufpr.br

Chronic cluster headache remains refractory to medical therapy in at least 30% of those who suffer from this condition. The lack of alternative medical therapies that are as effective as, or more effective than, lithium carbonate makes new therapies necessary for this highly disabling condition. Based on a previous report, we gave oral anticoagulants to three patients with chronic cluster headache. Two of them remained cluster headache-free while taking warfarin. In the third patient, the use of warfarin for three weeks initially increased the frequency and intensity of cluster headache attacks but subsequently induced a prolonged remission. In spite of the paucity of data available, oral anticoagulation appears to be a promising therapy for chronic cluster headache.

PMID: 16362716

Title: Re: Newbie Post
Post by I_can_dance on Jun 24^th, 2006, 1:15pm

CHacre2,

Sorry to hear you are in pain, but you came to the right place.

I am a physical therapist and know that there are some treatments that can help with TMJ problems. It is a rather specialized area though, so make sure your therapist has had additional training or experience in treating TMJ. Most therapists just get an introduction to this and may not offer as much expertise.

Also, the only med that helped my husband was melatonin.
He had to increase his dosage considerably higher than most before he noticed an effect. But with 18 mg, it eliminated his nighttime attacks. (By the way, he also weighs close to 300lbs too)

Good luck finding the right combo for you.

Paula