new headache doc looked like he was going to go nuts on me...

[bridgie]

I tried to prevent it. I wrote up my story before I arrived to save time and aggitation. But the guy insists on starting w/childhood history...big mistake. He pulls out a white blank sheet of paper and starts to write. I felt like I was on trial once he realized it was going to be a long story. More then one craniotomy and a cascade from the infections etc. He started asking me to skip the details. Then he realized the details were important and back tracked. I thought about getting up and walking out. Then he'd seem helpful. Picture going to Dr House for chronic post craniotomy headaches.

Anyway, he does not use narcotics and suggested going off the MS Contin. He says I may have rebound problems added in. He wonders if I have post craniotomy headaches but feels these happen only after occipital approach, so while I'm there he looks it up in the international headache journal and its actually much broader and includes all craniotomies. So then he's thinking I was a migrainer all along even in childhood although they stopped when I hit puberty and now started up again after these cranies.

In the end he decides cases like mine will help keep his own brain stimulated (actually says this) and he gives me samples of Topamax and a Imitrex pen and immetrix to try if need be.

I call my PCP and tell him what happened. He says maybe this doctors experiment will be useful and is now going to call this doctor next week to coordinate my care! Has Topamax worked on anyone here? I'm glad I had listened to the two tapes Capt Deb suggested from the ANA meeting. Gives me some understanding of their dilemma and the process they are following.

The other issue is my neck. I have spondylolisthesis at 3 levels which usually happens at the lumbar level. Spondylolisthesis is where the vertebra are misaligned or one vertebra has slipped forward from the one above. Happens w/fractures of the cervical spine and rarely w/DDD. I'll be speaking with my NS later this week about this issue.

[Captain Deb]

Bridgie,
I am thrilled that you are going off the MS contin and trying the Topamax and that the doc took such a detailed history.  My headache wizard listened to me for an hour. Topamax has worked wonders for me but it took a long time to work up to  the 150 mg that is the dose that has been most effective- almost 6 months- I had funky side effects that are fine now.  scroll down on this  section and you'll find a whole thread about it.

I was rebounding like crazy on hydrocodone for three years till my headache wiz put me on the neurontin and Topamax that work for me today.  I also use the Imitrex pen for the baddies, but with the Topamax they have been less and less frequent.

Hang in there! There is light at the end of the tunnel!

Capt Deb

[bridgie]

Thanks Deb for your encouragement. When I called my PCP he thought it a good idea to try this neurologists "experiment." My husband said he's certain I do not have migraines. He's known me now for 30 years and I did not have a headache problem until after the craniotomies. He's worried about me going thru this experiment and landing in the ER again. IMHO it seems like Dr Silberstein's idea (from ANA tape) is correct, that we have migraine "features" or whaever type of headache, its often we have a post craniotomy headache with a certain kind of feature. I think this particular neurologist is not too experienced w/PCH, but maybe that's OK to a certain degree. I say this because he seems to think I'm just simply a migrainer. This does not add up but if we can work out a plan that wrks and not too much side effects or dependency issues--that would be cool.

I liked this neurologists analogy about chronic daily migraine headaches. I'd not realized all the pains and odd sensations we can get are concidered chronic daily migraines. OK here's the analogy: These pains, jabs, stabs, zingers, heavy feeling etc are like sparks, hot embers, little flames licking and smoldering in a dry forest. There is always potential for a big forest fire to break out at anytime. In my case, when I travel and get jostled about its like throwing gas on the smoldering stuff in the forest. Once the fire starts (vomitting) there is no way to stop it alone at home not even w/antinauseates at least in my case. Therefore I have to head to the hospital to help put the so-called forest fire out.  The idea behind these long acting meds is to keep even the smoldering embers smothered so nothing can ignite or a full on migraine w/vomitting does not even start. 

Today my PCP called back and he's already talked to the neurologist. The first part of the experiment we'll try the Topamax and I'll continue w/the MS Contin as well. They decided I could do both to start. If this does not help there will be a dilemma as to whether the Topamax did not work because it did not work on me or if it didn't work because of the MS contin. But if it does help eliminate the embers from burning, this might be a sign I can start backing off the MS Contin. The backing off the MS contin will likely be a real bear, but maybe it would help if I'm on the Topamax. Be nice to go off the MS contin. I'd not gone in it n the first place if I'd not had those incidents where i went to the ER. My insurance plan covers 70% after a $2000 deductable so it adds up fast. we can't afford for me to land in the ER over and over, hence the more aggresive treatment.

Deb its encouraging you have had so much luck w/topamax. It sounds like Diamox which I've tried before. Do you get any side effects now? Does the Immetrix help to abort? Is the pen easy to use? My husband and I are going on vacation in about 10 days, so I'm going to wait to start the experiment until I return. BE neat to better define these headaches.

[Captain Deb]

The pen is a piece of cake to use, just follow the directions and use it at the first sign of a bad headache, not after you've had it for a few hours or it won't really work very well.  I  don't use it myself, I manually inject which is a little scarier, but I manage it and can give myself a little smaller dose than the pen does. Just drop your pants and squeeze your thigh fat!  Press the plunger and count to 10.  It really doesn't hurt but a few secs.

Bridgie,

The topamax takes a long time to kick in, months really, so you won't really notice much in the first few weeks.  You have to titrate up really slowly to avoid the side effects, or at least I did.  I would have crying fits and emotional outbursts and bad depression episodes, so I started with 12 mgs a day and titrated up very slowly.

The diagnosis I got was "cluster headaches with migranous components," and after I lost the hyrocodone, I just went down to a migraine 2x a week or so. I started on the Topamax after I met with Dr S at the ANA Symposium.  I insisted my headache wiz try me on this.   I love being a bossy patient! AAAAARRRRR!!!!!! I had tried it twice before with my regular neuro but couldn't get past the side-effects which is probably why the headache wiz didn't try it again.

Have fun on your vacation, use the pen if you have to--it sure beats going to the ER!!!

Hugs

Capt Deb