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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> First time post - new person
        
(Message started by: Nadineab on Jul 23^rd, 2007, 9:36am)

Title: First time post - new person
Post by Nadineab on Jul 23^rd, 2007, 9:36am

:)Hi there - first time post. I have struggles with head pain for 20+ years - being missed diagnosed at every turn (sinus, tmj, allergies, etc.) Two years ago sought neurologist who diagnosed migraine. Use Maxalt for pain. Things got increasingly worse so I sought advice of Peter Jannetta, here in Pittsburgh, who pioneered trigeminal nerve surgery to relieve cluster pain. He put me on Verapimil for 6 weeks with no success. It also gave me side effects.
Diagnosis - bi-lateral cluster. Said it is time for surgery.
He performs microvascular decompression of the 5th crainial nerve (trigeminal nerve) and 7th crainial nerve (facial). I also have some trigeminal neuralgia in teeth, ears. etc.
After reading the researching the info on the surgery (he wrote all of the research info), it appears to be a very serious invasive brain operation with not a guaranteed success rate. I would need "two of these" as I am affected bi laterally. I just went through the weekend from HELL with pain and am torn as to what to do.
Anybody out there ever have this surgery???
My first reaction is just to take Maxalt for the attacks and put up with it, but the pain, as you well know, is so severe I wonder if this serious surgery is worth it.
In the back of my mind, I still can't come to terms that "cluster" is the cause, as I still am fighting hormonal changes at my ago (50) and feel that plays a large part of it. I am on BCP to regulate bleeding and hormonal fluctuations.
I would feel much better if I could obtain a "black and white" diagnosis such as there is an actual blood vessel pressing on nerve, there is a malformed vein, etc.
The MRI does not show this.

This surgery is basically Exploratory in nature.
Any input would be greatly appreciated.
Thanks for listening.
NADINE

Title: Re: First time post - new person
Post by seasonalboomer on Jul 23^rd, 2007, 9:44am

Before you go this route you owe it to yourself to edcuate yourself with every bit of information on CH and TN. If it is CH there are other options to explore before you go to this.

The idea that surgery on major nerves in your head can be "exploratory" should be a major concern. It is invasive and anything that deals with anything in neurological system should be evaluated at great length. It is YOUR responsibility to learn every angle on this thing before you simply let them poke around these nerves. Only then, and after you have made the decision to go whichever direction, and are willing to accept the outcome (good or bad), should you consider going forward.

Have you dont the cluster questionannaire? Are you working with a bneurologist familiar with these particularly awful types of headache?

Please be careful.

Others pleae chime in.

Scott

Title: Re: First time post - new person
Post by DennisM1045 on Jul 23^rd, 2007, 9:56am

Hi Nadine, Welcome. I have no experience with brain surgery for the treatment of CH but know enough that it scares the s**t out of me. You are seeing a Dr who pioneered this type of surgery. I think its only natural that he would suggest it as a form of treatment for your CH. Surgeons operate! It's what they do.

Have you tried abortives like O2 and Imitrex injections? Have you tried preventatives like Lithium, Gabapentin (Neurontin) or Topomax? Maybe I just need a little more history. But from what you've written I just don't see enough exploration of more main stream treatments. After all, brain surgery is BRAIN SURGERY!

Good luck and check back in to let us know how things go.

-Dennis-

Title: Re: First time post - new person
Post by Guiseppi on Jul 23^rd, 2007, 10:35am

We had a doctor at the recent ouch convention talk about several of the surgery options. A side effect in one of the patients trying the surgery was that he died. A significant side effect in my book. These things hurt, but on their own, they won't kill you.

Have you tried anything else as a preventative med? Lithium, topomax, combining the verapamil and lithium has worked for many. Have you tried any other abortives, imitrex, OXYGEN, OXYGEN, OXYGEN, a very effective abortive for many on the board.

Dennis is right, brain surgery is....brain surgery, not to be taken lightly. Please do some reading on the board,maybe there are other alternatives you haven't given a chance yet. Stick around and see if we can help you out.

Guiseppi

Title: Re: First time post - new person
Post by GrandPotentate on Jul 23^rd, 2007, 11:10pm

Personally, I'd get another opinion or two before I let someone go exploring in my head. There are a lot of us that are dealing with this with some relatively nicer alternatives like oxygen as an abortive, caffiene for abortive and/or postponer. I thought I was gonna die a few years ago, and had all kinds of dopey stuff before I found this out.

Many of us need some stronger stuff, but there seems to be a lot of difference between what you have tried and what is reported effective. I think you'll find most on this site would try a number of alternatives before doing any surgery.

A good neuro should be thorough and check to make certain nothing else is a problem. Surgery may be called for if something specific showed up on an mri or other indications. But your memo doesn't sound like that is the case.

Please let us know how this works out!

Jon

Title: Re: First time post - new person
Post by Nadineab on Jul 25^th, 2007, 8:36am

Thanks for all your replies!!!

Should I shop for another neuro? Seems like my guy just wants to operate - only tried Verapimil.

I would feel better if I had a diagnostic that "showed" a malformation, vessel pressing on trigeminal nerve, etc. I read that a thin slice MRI may do that. Do you know anything about that?

Jon, you mentioned caffeine? What do you do with that?

I have been using Maxalt for the last five days as an abortive, which helps, but of course, it always comes back.

Thanks for listening,
NADINE

Title: Re: First time post - new person
Post by Guiseppi on Jul 25^th, 2007, 10:18am

The bad news is....they always come back! I normally get 2 cycles a year about 8-12 weeks worth. Going on 30 years with them. As soon as my cycle starts I do a 2 week prednisone taper while I start on lithium, eventually getting up to 1200 mg a day. The lithium blocks 80% of the headaches but takes about 2 weeks to get up in my system. the prednisone keeps the CH away while the lithium builds up. that's my prevent routine.

For the headaches that come through I use oxygen, along with oral cafergot. The oxygen stops the ch in its tracks, usually in 8 minutes or less, the cafergot keeps it away for up to 12 hours. When I'm getting slammed I'll resort to the imitrex jabs but I REALLY hate the "snakes crawling up my back" feeling it gives me so I save the trex for the really bad ones.

That's my routine. There are many combos of that routine and many many many other meds I'd want to try before I'd go under the knife. I'd strongly suggest at least getting a second opinion. And stick around the board, we promise not to cut into your brain and we'll still try and help ya!!!

Guiseppi

Title: Re: First time post - new person
Post by Jeff2 on Jul 25^th, 2007, 10:36am

Ah sweet caffeine! It's a effective vaso-constictor and you try to get alot of it in your system as quickly as you can as early in the hit as you can. Energy drinks seem to be the most popular way of doing this. As soon as you feel a hit coming on, slam an energy drink. Don't sip it, chug it. For most people, ice cold is the way to go. The energy drinks contain not only caffeine but also taurine which helps get the caffeine into your system faster.

If you don't have one handy, a very stong cup of coffee, iced or otherwise, is the way to go. When I'm travelling and don't have access to either I keep a bottle of No Doz and taurine supplements with me. Not as effective because they are a bit slower getting into the system, but better that nothing.

If you are concerned about all the caffeine consumption, just keep in mind that it's easier on you than most of the abortives prescribed by the doctor. O2 being a notable exception. I will say that by the end of my last cycle I could drink a god-awful amount of coffee.

And, Nadine, keep reading. Knowledge is power. And this is a powerful site.

Title: Re: First time post - new person
Post by Rosybabe on Jul 25^th, 2007, 10:57am

Hi Nadine! Welcome Aboard!

Before you let someone cut into your brain, dig out some information and read about CH's, there are a lot of options you can try before going into surgery (conventional meds and unconventional).

There are people here who have done it and I bet they will come later to let you know about their experience.

In the meantime check out O.U.C.H., there is a lot of information and links to recommended Doctors in your area.

Here is the link:

http://www.ouch-us.org/index.shtml

Hoping you find the right treatment for you and please stay with us , we like to know how you are doing and the outcome of your doctors visits.

Clusterville never closes!!!

Pain Free wishes for you!!

Rosy.

Title: Re: First time post - new person
Post by George_J on Jul 25^th, 2007, 11:25am

If your neuro has only tried Verapamil and is now advocating bilateral surgery on the trigeminal nerve, I'd get a second--or third--opinion. Seems more than a little drastic to me.

Surgeons operate. It's what they do. If you have a hammer, every problem looks like a nail.

Many other treatment options out there. Personally, I'd exhaust all the possibilities before I consented to an invasive procedure with an iffy track record.

I'm not a doctor, so take what I've said for what it's worth. But consider carefully--it's your head. Doctors sometimes do some pretty weird things when they're confronted with a problem that looks like a job for their particular mightymouse.

Best wishes,

George

Title: Re: First time post - new person
Post by Sandy_C on Jul 25^th, 2007, 3:10pm

Second opinion, third opinion - yes, shop for a new neuro.

I think I would exhaust every other possibility before brain surgery. Yes, CH hurts like Hell, and your life can be totally disrupted because of it, but it won't kill you.

Find another neuro - demand oxygen, print out and take the information you find here on this site and on the OUCH site.

Please, think this through completely and thoroughly before making a decision.

Sandy

Title: Re: First time post - new person
Post by GrandPotentate on Jul 25^th, 2007, 8:41pm

Caffiene, in any form I've tried, has not worked very well as an abortive. It seems nothing I eat or drink can work fast enough for me.

I tried NO caffiene for awhile, and ended up getting hits all day. So that didn't work either.

A few cups of coffee during the day seemed to work as a postponer. That, and keeping a pretty rigid schedule on sleep and meals, usually gave me hits in the evening or night when I was home and better able to deal with it. Maybe my social life sucked, but I was able to keep earning a living.

Now that the cycle is over, I can drink coffee, or not, drink beer, or not, eat Chinese, or not. I get occasional shadows, but seem to be pretty random.

I hope your cycles a short one, and you join us in PF land for awhile.

Jon

Title: Re: First time post - new person
Post by Wayne on Jul 26^th, 2007, 6:40am

Hi Nadine

Sorry you're here but I hope you find at least some direction.

I can just echo what has been said above, I don't think that you should consider any surgery until you have exhausted every other alternative.

The most popular abortives are Oxygen, Redbull and Immitrex. Try these all in which ever order you like, they may not work for you but they definitely do work for a lot of people here. Redbull has been a absolute Godsend for me!

The most popular preventatives are Verapamil, Topomax and Lithium. Try them all, Verap didn't work for you then maybe one of the others will.

I wish you the best of luck!

Title: Re: First time post - new person
Post by zapparulz on Jul 26^th, 2007, 8:52pm

hi all i am also new-

i simply think that the medical profession is way to quick to prescribe medications with almost certain side effects- and suggest surgeries that may or may not work-

I would seriously try everything else possible-and if nothing works-

i'd still think really hard before letting anyone operate on you like a guinea pig-

Title: Re: First time post - new person
Post by sandie99 on Jul 27^th, 2007, 5:32am

Nadine,

not all neurologists know enough about ch. So be your own "doc" - and learn as much as you can about clusters. The know you know about ch, different medications and different treatments, the stronger you are in the battle against ch.

Check and see what works with your ch. There are many things to try.

Lots of PF (pain-free) days,
Sanna