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        New Message Board Archives >> 2004 Posts >> clusters? TN? Please help!!
        
(Message started by: cipher_cat on May 23^rd, 2004, 10:39am)

Title: clusters? TN? Please help!!
Post by cipher_cat on May 23^rd, 2004, 10:39am

can anyone help me please?

if you remember seeing my posts before i've had 9+ attacks a day/night for the past six months. unfortunately indomethacin, prednisone, topamax, imitrex... didn't help. so sick of it all my neuro and i decided to toxic bomb the beast and see if that helps. first they did steroids via IV then started me on 600mg lithium a day PLUS 10mg baclofen, 240mg verapamil, and the 100mg of topamax i was reducing to get off of. the clusters stopped! thank god! yet that's when we discovered i have something else evil that didn't go away. we added 600mg tegretol to the mix and for two days i was pain free! but the devil came back harsher than before. since you guys know a lot about kinds of head pain i was hoping someone can help name this other beast. please.. i'm desperate and scared out of my mind. anything will help.

i get sharp shocking pains throughout the day but i get attacked by them in concentration a couple times at least. that's when i beg god for death. last night an attack lasted over 3 hours! when they hit hardest they're accompanied by this boring pain behind my eye and above my ear. this head crushing feeling surrounds a frenzy of sharp unbearable shocks to my head like some freaking electrical storm. because tegretol helped i thought maybe trigeminal neuralgia but i have no pain or sensitivity in my teeth or face or any kind of trigger that i know of. i tried reducing meds a little but it just gets more frequent and honestly i can't bare what i have already. some days aren't as fierce as others and for some reason i wonder if a sensitivity to cold/heat might cause them? although i have attacks despite temperature changes they seem worse when i get into a hot car or drink something really cold.

please help, i'll take any suggestions! i'm scared to death of this!

Title: Re: clusters? TN? Please help!!
Post by Leesa on May 23^rd, 2004, 1:27pm

Cipher, hun look at the left of this and youll find all kinds of info. Take the cluster quiz. READ READ READ dear. Check out the docs listed on the OUCH sight, you might find a doc right near ya that can give ya some hope and help. We have a few folks here from TN. I live in Lawrenceburg TN. Stay strong and in touch.
Leesa ;;D

Title: Re: clusters? TN? Please help!!
Post by Karla on May 23^rd, 2004, 1:40pm

Sounds an awful lot like clusters to me. Except for the electrical jolts. Maybe the medicines have mutated it somewhat for ya.

Title: Re: clusters? TN? Please help!!
Post by Jeepgun on May 23^rd, 2004, 1:54pm

I live in Tennessee. What part of the state to you live in? I live about an hour from Huntsville, straight south of Nashville. Hope you find some relief soon, dear. Let me know if there's anything I can do to help.

-Frank

Title: Re: clusters? TN? Please help!!
Post by cipher_cat on May 23^rd, 2004, 2:04pm

=/ i guess my post was kind of confusing but by TN i meant Trigeminal Neuralgia not Tennessee.

i've unfortunately become pretty familiar with clusters but i know this is either completely mutated or not the same thing at all. there's no warning in my neck, no tearing or running nose and the excrutiating shocks come all day long and only last for a minute or less until it's a full fledged attack when the shocks don't give up for over 3 hours. it's almost all shocking pain! it's so completely differant i honestly think they're not the same thing at all but i don't know what this is. the boring feeling roams from eye to ear around it all but that feels more like an after effect. sorry i'm not very good at explaining this but it's deadly frustrating not to be able to predict total agonizing pain.

i've read what i can find on trigeminal neuralgia which is more of a shocking pain but it seems like i should have a trigger in my face? not sure. is there anything else i should look into? are these mutated clusters? ugh!

Title: Re: clusters? TN? Please help!!
Post by Tom on May 23^rd, 2004, 6:33pm

http://imigraine.net/other/clustertic.html

Cluster-tic headache

There is now recognized an overlap between trigeminal neuralgia-type headache and cluster headaches. The diagnostic characteristics of the cluster-tic syndrome are analyzed by Alberca and Ochoa (1994). The headaches are characterized by short attacks of pain localized in the facial territory with autonomic signs during attacks which come in clusters. Still another overlap syndrome such as chronic paroxysmal hemicrania and tic has been reported (Mulleners and Verhagen, 1996).
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Cephalalgia
Volume 7 Issue 2 Page 161 - June 1987
doi:10.1046/j.1468-2982.1987.0702161.x

Cluster-tic syndrome
Andrzej Klimek

A case of cluster-tic syndrome is presented. A 51-year-old man developed pain attacks corresponding to the second branch of the trigeminal nerve. After treatment with 1200 mg carbamazepine daily, the attacks disappeared. Full remission was achieved, and carbamazepine therapy was continued. Pain attacks of a quite different character then appeared; their clinical picture corresponded to cluster headache. After treatment with cyproheptadine, the cluster headache attacks ceased, but 2 days later, before the discontinuation of the treatment, the attacks of trigeminal neuralgia reappeared. Treatment with carbamazepine was started again, and there was remission of the trigeminal neuralgia after several weeks.
-----------------
Cephalalgia
Volume 13 Issue 3 Page 205 - June 1993
doi:10.1046/j.1468-2982.1993.1303205.x

Relief of cluster-tic syndrome by the combination of lithium and carbamazepine
Julio Pascual, José Berciano

This paper presents a further case of cluster-tic syndrome. Cluster headache and trigeminal neuralgia have coexisted in our patient for 18 years. Carbamazepine has selectively relieved the tic douloureux, while lithium has completely controlled the cluster headache. Our case shows again that the simultaneous occurrence of cluster headache and trigeminal neuralgia seems to be more than coincidental.
------------------
http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0004-282X2000000300019&lng=en&nrm=iso&tlng=en

...This paper intends to discuss an uncommon affection, with just 39 reports in the literature, in which coexist trigeminal neuralgia and cluster headache, the so-called cluster-tic syndrome1-3, aiming to add five new occurrences with overlapping symptoms, which does not occur in the majority of the reported cases.

The cluster-tic syndrome is characterized by the coexistence of two kinds of pain. One is strictly unilateral, usually periocular, with evident autonomic features, and daily attacks for weeks or months (cluster). The other is characterized by paroxysms similar to electric shocks (tics).

In the reported cases the diagnosis of the overlapping conditions was made based on the criteria of the International Headache Society. The discussion will refer to the involvement of the V cranial nerve as a probable common pathway of two affections. All patients were treated with drug associations for neuralgia of the V pair and cluster headache...
(here follow case descriptions and the respective therapies)

Wish you ATB!

Thomas

Title: Re: clusters? TN? Please help!!
Post by bobkip on May 23^rd, 2004, 7:02pm

Sounds like the old ice pick or TN. I had it during a cycle as the cycle was tapering down. It was a sharp unexpected stabbing pain lasting a few seconds but would go on for any where from about 15 minutes to hours; every minute or so, BAM. Also got them at night in addition to the regular beast attacks. They lasted a couple of weeks after the CH cycle ended and went away, thankfully to never return. Best of luck.
Kip

Title: Re: clusters? TN? Please help!!
Post by cipher_cat on May 24^th, 2004, 6:07pm

thank you so much everyone!

the combination of pain, lack of sleep, and sheer confusion from trying to get used to all the new meds in my system made research near impossible. i didn't know where to look. it wasn't typical anything!

thank you Thomas for giving me that information! it's a great place to start and sounds a lot like me.

Kip, i'm sorry that you had to go through something like this. i can only hope this is a sign it will all be ending soon for me also!

thanks again!!!!!