Hi Gang,
Please allow me to vent.

About a month ago, a new headache specialist rolled into town. I was asked to see this person. So I did. She decided after about 20 minutes that I did not have ON, but simple migraines and took it upon herself to take me off my meds that I have been on for the last year (taper me off) and have me go on topomax and another rescue med , titreing me up.

From day TWO of this brilliant plan, I had a fierce headache across the front of my forehead in addition to the pain I normally have at the base of my skull. I have had heartburn and an upset stomach that has never gone away. I cannot sweat at all, which is a nightmare because I have been having hot flashes because I have had chemo and my hormmones are all out of whack. I also have had high anxiety and no sleep, despite taking sleeping pills.

Finally, two days ago, I'd had enough and called the office and spoke to someone there about getting off this drug, which is what I am doing. I have to see this doc again on Monday and I am NOT going on anything else. I am done playing guinea pig. I am so angry that with how sensitive I am to drugs that I wasn't monitored more closely or that she wasn't more careful about what she gave me. I have already spoken with my pain specialist whom I saw last week for freezing shots-I was in so much pain I could not even turn my head-and she knows what's happened. She said it's not a problem to keep treating me and I think she thinks that the headache doc was wrong. I certainly do.

Anyway, I want no part of this headache doc. Oh and the topper? The headache doc was all chirpy about the topomax being good for weightloss which I found HIGHLY offensive. If she'd bothered to listen to anything I had said to her in my appointment, she'd know that wasn't an issue for me. Nice to know she was listening and not judging. (I am currently slightly overweight and have lost over 65 lbs and am still on the way down. I only have 35 lbs. left to lose.)

My plan is to go back on the drugs I was on before this whole mess. THey weren't perfect, but at least I knew what to expect. I am also getting an identity cane (blind cane) for when I have migraines because when I have them, I have no depth perception on stairs. Someone is supposed to be coming to show me how to use it safely. I have almost fallen down stairs twice when I've had a headache in the front of my head.

Anyway, just had to get that off my chest. I've been pretty sick, which is why I have been so quiet. I just had my last chemo (for MS, not cancer) a week ago and am recovering now.

you still out there T? I am still waiting to get in to see the neuro surgeon. It's taking forever.....

Wow PG,

I hope things start looking up for you. A very big congratulations on the weight loss. I keep trying to lose here, but it doesn't come off easily.

Anyway, I'm sending lots of pain free wishes your way

((((( PG )))))) . . .T is still here
starting new med/ switching... what a silly idea for new doc to "try" with the treatment (chemo). I hope you get into a neuro soon that should help make some positive progress. maybe a pain specialist too. I think the head ache doc was off with the treatment and dismissing the neuralgia and replacing it with just migraines . Hope you are able to adjust back to meds that help you and that your going to get into see a neuro sooner then you think.
thanks for the update. make sure you take it easy ... wishing that the sleep will find you and you rest and recoup quickly.
low pain and continued strength being sent to you PG.
PEACE
BMW...(Tina)

Hi T!
I still see my pain specialist and have for a year now. The neuro surgeon who does the stim has a 14 month waiting list and I am waiting on him. THat's the one that's taking forever! I have an MS speciaist (who is a neuro) so I have that end covered. It's the new "headache specialist" who I am not impressed with. 20 mins. and she has all the answers and switches everything and creates a new and improved version of hell for me.

I am titring off the topomax currently and should be totally off it by Sept. My plan is to go back on the original meds I was on before everything got messed up. My script is still good. I told my pain specialist what happened and she's happy to keep on treating me and I am glad.

I can't tell you how stressful this whole experience was. It's made me VERY gun shy of trusting new docs, that's for sure! My instincts with this one in particular were screaming red alert and I should have just trusted myself and walked out when the red flags went up. That'll teach me to ignore my instincts!

Thanks EE. I did WW for 2 years and then stopped in April when I was starting chemo. Every time I did chemo I dropped about 12 lbs. in a week. Not a fun way to drop weight, let me tell you. I have maintained the 65 lbs. loss for over a year. I still need to drop about 35-40 lbs, give or take, but I've been so busy trying to just survive with how ill I've been it's not been my top priority. If and when I ever feel better, I will make the effort. It's really just vanity lbs. now.

I hope you feel better soon,,another point ,,when ever i come off a med or start a new one or add another,,,it seems to trigger headaches for me,,but not to your point,,,i get really bad ones when i come off of oxycodone-continue release or percocet and vicidin,,,,im hoping i dont get a headach when i come off the xanax,,,,

So I had a follow up appointment with this headache doc and she predictably wanted me to try some other drug. I pateintly explained to her that I have decided that given my sensitivity to drugs and how susceptable I am to side effects and how burnt out I am with treatments, I am opting to go off the one causing me problems, go back on the one I was on in the first place and wait for the neuro surgeon. She surprisingly didn't argue with me. In fact, I think she has realized she was wrong about telling me I didn't have ON but a simple migraine. That's what happens when you don't listen to your patients and make snap judgements. The patient is the one who ends up suffering.

So that's where things stand. I am working my way off the drug from hell. The migraines I am having while I get off it are horrible-I am so sick, but I know it will end as soon as this crud is out of my system and the old drug is balanced and up to a proper dosage again. I just have to get through about another week or so.

I'm tell you between chemo, hot flashes, migraines and side effects it's been a rough month. I've been hanging on by my fingernails.

Yes, it pays to be very cautious about taking new drugs. Any drug that can have a good reaction is equally able to have a bad one.

My daughter also has drug sensitivity, and will start with perhaps a tenth or so of a dose for several days. If OK, she will gradually increase it. Even so, on some her max dose is still a quater or so of what is recommended.

Yeah I can't understand WHY this new doc did not 1. Listen to me when I told her all my drug allergies and realize she needed to listen to me or 2. read my chart and realize she needed to listen to me. Either way, she needed to be way more cautious than she was.

Like I said, she's back peddling now!