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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> new guy on the block
        
(Message started by: fraalan on Sep 6^th, 2006, 11:30pm)

Title: new guy on the block
Post by fraalan on Sep 6^th, 2006, 11:30pm

Hi folks, what a relief to find this board.
I was diagnosed 6 days ago with trigeminal neuralgia.
This came from a emergency room visit at 1 am. they did a cat scan and came to this quick conclusion.
Today I saw a neurologist and concluded (with no resistance) that I am suffering from cluster headahes.
I have the occipital nerve and the TN nerve tag teaming me. The tn is 100x more painful and it is the focus as it is the squeaky wheel.
I am a 36 yr old male and dont want to be on meds the rest of my life.
Last Friday I had the pain to end all pain. I can't handle it again.

I am on pain killers and dropped off some neuralgic prescriptions tonight. I dont recall what they were but I will post more tomorrow.

I am scheduled for Gamma knife surgery (different dr) on the 20th for the TN and was going to address the occipital issue when I went there.(mayo rochester)

The pills aren't a viable solution short term or long term as I have my own company and it will fail if I dont get this resolved.

I seek darkness and silence and with the screaming kids and screaming clients there is no solitude. luckily there are no bullits in the house.

Is anyone practicing meditation?

edit:
I have the constant pain unfortunately, my tn doesn't go away, I have the constant "I need a root canal" feeling.

Title: Re: new guy on the block
Post by BB on Sep 7^th, 2006, 6:09am

Hi

Sorry you have this terrible pain that you are going for surgery.

However I am a bit confused. Do you have cluster or trigeminal neuralgia or both?

Anyway, good luck with the surgery, hope it works well for you.

Annette

Title: Re: new guy on the block
Post by fraalan on Sep 7^th, 2006, 11:07am

both.
The trigeminal is the most painful part at the moment.

Title: Re: new guy on the block
Post by Margi on Sep 7^th, 2006, 12:07pm

Fraalan, you do know the downsides to gamma surgery, right? That you will be partially paralyzed and that your clusters can come back on the other side, right?

There are so many other options now than this almost antiquated and disfiguring surgery. Has your doctor informed you of them?

Title: Re: new guy on the block
Post by BB on Sep 7^th, 2006, 6:20pm

Have you tried Lyrica for TN pain ?

My DH had TN and Lyrica stopped the pain completely within 3 weeks.

Surgery sounds "terminal" if you know what I mean, there is no going back.

Good luck with whatever your choice though.

Annette

Title: Re: new guy on the block
Post by tanner on Sep 7^th, 2006, 6:33pm

Yikes!!! I wish you had found us sooner! I was originally diagnosed with trigeminal neuralgia and later had that diagnosis changed at Mayo Mn. after having a completely unnecessary surgery that did not take the pain away, it just made me droop and drool, and affected my speech for 2+ years.

I wish you had more time to investigate but I wish and pray only the best for you. Tim

Title: Re: new guy on the block
Post by fraalan on Sep 7^th, 2006, 10:29pm

I have seen a second doctor yesterday and he did prescribe Lyrica 250 mg i believe and carbamazepine. my pharmacy says Lyrica isn't available in that dosage. I have decided to try the medicine for the next few weeks and see how it goes.
I have taken the "I don't want to go thru that hell again" stance and want this gone forever.

I can always cancel the appointment, the plane ticket was free with miles so no big woop.

I was told there would be a possibility of some tingling of the face but no other side effects. I am in a professional industry and cannot be drooling and speaking with an impediment.

I picked up Taurine this morning and took 1000 mg and had my best day in a week. I also had some magnesium with a few red bulls. No Vicodan or even advil. I just had some tension in the head. I can handle that!

I am still reading every night as much as possible and it is much easier with a clear pain free head.

I have had several orthapedic surgeries and they saying is "once under the knife always under the knife"

I shall read and read, and rethink .

THANK YOU

and bless all of you.

Title: Re: new guy on the block
Post by paulc on Sep 7^th, 2006, 10:54pm

on 09/07/06 at 22:29:12, fraalan wrote:

Please do rethink the surgery very seriously-it doe have terrible side effects and after a few years the trigeminal nerve regrows and you are back to not only having CH pain but being permanently disfigured-it really is not worth it. Aside from reading and rethinking about the surgery, pray about it and try to get some wisdom from above. Take care.

Title: Re: new guy on the block
Post by BB on Sep 7^th, 2006, 11:18pm

Lyrica and Carbamazepine are proven medication that mostly work really well for TN and you dont have to be on them for life.

If you are like my DH, TN was triggered off by CH due to the inflammation of the nerve, that means once the CH cycle finishes the nerve will heal and the neuralgia will be gone anyway. Hardly a case for such drastic measures as surgery.

My DH started on 75 mgs of Lyrica and built it up to the maximum dose of 600 mg daily ( in divided doses ). The TN pain went away COMPLETELY.

He is to slowly tapering it back down to 150 mg daily and will stay on it for 2 months after the CH cycle finishes, then he can stop taking it and shouldnt be bothered by TN anymore.

Please reconsider your options.

Good luck with it and painfree wishes to you.

Annette

Title: Re: new guy on the block
Post by fraalan on Sep 13^th, 2006, 10:53pm

pain free for 5 whole days. The dread of having the beast come back still hampers me from going out in my usual fashion but I expect that to fade.

The pills must be helping

1000 taurine
magnesium400 mg
red bulls(diet)
lyrica 50mg
carbamazepine 100 mg

I am dopey as hell though , making stoopid mistakes at work, also drowsy.
I dont think i can handle to side effects for long.
Hopefully I can finish out the bottles and see what happens.

Title: Re: new guy on the block
Post by BB on Sep 14^th, 2006, 2:02am

The side effects will get better as your body gets used to it.

Hang in there. Things will improve.

Sending you good vibes and painfree wishes.

Annette

Title: Re: new guy on the block
Post by chopmyheadoff on Sep 14^th, 2006, 9:25am

jesus - there is actually something MORE PAINFUL than clusters . .

oh my god

i am gobsmacked. i thought i knew torture

Title: Re: new guy on the block
Post by fraalan on Sep 16^th, 2006, 10:03am

I read that TN is the most painful affliction known to the medical community. I feel the bitch coming back too.

Title: Re: new guy on the block
Post by chopmyheadoff on Sep 19^th, 2006, 4:44am

on 09/16/06 at 10:03:16, fraalan wrote:

I read that TN is the most painful affliction known to the medical community. I feel the bitch coming back too.

i read the same about ch.

seriously though - i can ONLY JUST cope with a kip 10, and i mean only just. where does this TN come on the kip scale ??

Title: Re: new guy on the block
Post by calisto on Sep 19^th, 2006, 6:13am

I thought trigeminal neuralgia was just another form of cluster headaches that has more hits but which dont last as long?Im sure it says that here somewhere.Isnt indomethacin supposed to be good for that?

Count yourself lucky on one hand fraalan,if you'd gone to an emergency room in england they wouldve done a blood test,given you 2 paramax and told you get your eyes tested (i aint kidding!)

I dont wish to be a doom sayer but i didnt think there was a lifelong cure for clusterheadaches.Havent we all gotta medicate for the rest of out lives?

Hey if theres a cure i want it,i dont fancya droopy mush much though!!!!

Sounds like youve got some badass business going on there fraalan my heart goes out to you.

This condition sucks like a sucky thing thats really good at sucking!!!

Hey,maybe were all going somewhere really nice in the afterlife to make up for it......Mines a guiness,what you having chopmyheadoff??

Simon

Title: Re: new guy on the block
Post by fraalan on Sep 19^th, 2006, 11:36am

on 09/19/06 at 04:44:41, chopmyheadoff wrote:

i read the same about ch.

seriously though - i can ONLY JUST cope with a kip 10, and i mean only just. where does this TN come on the kip scale ??

I hit a ten 2x, luckily there weren't any bullits in the house. one lasted 15 minutes or so. Hard to tell exactly how long it lasted. It seemed like 20
It did last for 4 days at kip 5 and I was ready to pull my upper right teeth out.

My dr said this started in the occipital and moved forward, thus being a cluster side effect.

I think I am getting acclimated to the meds. I am only a partial dope now. It feels like when I used to smoke a lot of weed. slow responses and not crisp and sharp focus. It shall return.

Thanks for the responses, I was supposed to be on a plane to the mayo this morning.

cya gamma for now.

Title: Re: new guy on the block
Post by seasonalboomer on Sep 19^th, 2006, 11:56am

TN sounds like a rough ride there friend. I'm so glad you came here and were given some additional options to consider to get things under control.

I saw an article about Curt Gowdy who was also a TN sufferer.

http://www.esquire.com/features/learned/030601_mwi_gowdy.html

(you have to scroll down a bit to where refers to TN)

None of us are alone and with the help of sites like this one (but especially this one) we can find hope and hopefully a way to control the mosters we fight.

Good luck.

Scott

Title: Re: new guy on the block
Post by fraalan on Sep 23^rd, 2006, 8:59pm

cool read thanks
Articles like that help explain to freinds what I am going through.
My fain free week was nice, now I am back to the gates of hell. the beast is lurking again.
I spent 2 hours on the MRI yesterday, hopefully we will know more. damn that MRI is a hard board to lay on. I think my brain flattened out.

Title: Re: new guy on the block
Post by fraalan on Oct 15^th, 2006, 9:03pm

man I just learned the evils of red wine.
I had 4 glasses thursday night, my pain was in the 3-4 range that day and the meeting was important.
Fri night had me in the ER for 3 hours.
Spent the entire weekend in bed with some strong meds. I was told to only take 3 a day. I just popped my fourth for the day. hopefully my day will be over soon.
Its the hillbilly heroin crap that rush linbaugh got hooked on. I cant remember the name and I asked the wife to hide the bottle. My Dr. is on the cluster headach board and seems to have eliminated just about everything but the thyroid. blood tests come back monday. another night of hell.