Thanks everyone for the great idea and info....

I am taking topamax 75mg, abilify 2.5mg (for preventing migraine--off label use, and because I shake 24 hours a day without it and they don't know why), 7.5 mg prednisone, 25grams IVIG for 5 days every 21 days, and mestinon 60-90mg every 6 hours this week from 60 3xday.

I also stopped omeprazole Tuesday after a taper of every other day for a couple of weeks. Neuro knows and recommended this. I have no stomach issues and never did and it was for high dose pred. Also, we think it may have been implicated in my tachycardia and bp spikes.

The tramadol is down to the most ridiculous dose at this point: 1/4 a tablet every other day this week. The surgeon said to stay on it two more weeks if I have w/drawl sx. and then call back to reassess. I left a message for neuro but got no response but it is not his area of knowledge for sure.

I don't have any pain so I don't think I need and pain expert. I tried to get off it in December but it's been hell. I dropped it from 200 mg to 50mg in 5 days because no one told me it was addictive and I had no pain. OMG, was that a disaster. And even though we slowed the taper, the withdrawl sx are just on and on even though it has now been weeks and weeks. At first they said this current 1/4 dose wasn't even a dose and to just stop but then I explained my sx and they changed their minds.

But I don't think it could be dangerous at that low a level now, right? I mean, what do you do?

debra

Debra, The only reason to see a pain med specialist is to finish coming off of the drug! You don't have to be in pain to see a pain specialist - it can be for simply getting off of an addictive drug.

You could see if there is a liquid form of Topomax to continue the slow withdrawal off of it. I have known people who did that with Paxil and it worked.

The danger is not the dose alone!!! Let's see if this example works. You know how when someone takes Prednisone they can't go off of it quickly or at all. They can get down to a dose like 5 mg. and they can't get off. Why? Because their adrenals have shut down. It's similar with pain meds. Often it's the final doses that can cause the most problems. That's why you need an EXPERT on pain to help you. Do you understand?

And, yes, the withdraw symptoms can still be dangerous. Someone going off of Pred too soon can cause an adrenal crisis, which is life-threatening.

Drugs are not benign. Always look to a drug if you are having unusual symptoms or signs like tachycardia.

I hope you can get it all worked out.

Annie

Thanks Annie....I get it now. I was getting worse and worse and needing more and more mestinon to keep up with the breathing issues this morning.

Get this! So I changed tactics since it's Sunday and can't get a hold of a pain specialist I called my primary thinking maybe they would know more about tramadol. They said since I have been tapering so slowly, it can't be that. But then after hearing the story and being sick for over a month, they decided to try upping the dose as a experiment to see if it changes anything....

Within an 80 minutes, I went from profusely sweating to stopping. Nausea to no nausea. Shaking to no shaking. Crazy blood pressure to normal blood pressure. Chills to no chills. I feel entirely different and my breathing went from 25 respirations/minute down to 14! I then checked the plasma concentration of tramadol and it said 1.6-1.9 hours which means I am right exactly in the peak window.

So, does that mean we have an answer now on whether it is anxiety or tramadol?

That was very astute thinking on your doctor's part.

I know someone who's doctor had done too dramatic of a dose drop of Pred and had all the signs of an adrenal insufficiency. Very scary. She took more of it and was better.

This drug stuff is dangerous. Same thing can happen when you take a hypertension drug. People who go off of them can have "rebound" hypertension that is worse than it was before they got on the drug!

There are a lot of situations where you can feel short of breath and it's not MG. Like when blood glucose is low or when electrolytes are off. And be careful about taking more Mestinon!

So have your primary find a VERY knowledgeable pain or addiction doc and get some help. I'm glad your "experiment" worked! I'll bet you're relieved.

Annie

OMG! I am soooooo relieved. I thought I was dying yesterday morning it got so bad before the experiment.

The rest of the day and evening I felt actually normal but tired. I used 3 extra doses of mestinon Saturday to make it and I needed none after I took tramadol. And the mestinon only took my breathing down about 10 respirations/minute. They were still 25-30. After tramadol, the breathing stayed at 14-16 the rest of the day and through the night and it was the first time in a week that I was no longer conscious breathing. It was wonderful.

The doctor said to take another 1/2 tramadol in the evening if it all started up again but it didn't. So, I made it to the morning with no problems.

I am going to notify my primary and the on-call doc said he'd talk to her and I need to call my neuro yet again. It scares me that this is affecting my respiratory system so dramatically. I have had MG respiratory issues so that confused everyone and they were saying the mestinon should NOT help if it's not MG. Well, it helped a little.

I wonder about why my MG sx were exacerbated though. My voice became stronger and the hoarseness went away after the tramadol too. I have had trouble walking on and off all week and I feel stronger. Also, I stopped choking in the evening. Could this mean that the situation just put too much stress on my system?

Thanks again : )

debra

Debra, I'm glad it worked.

Since Tramadol INHIBITS the acetylcholine receptors, again, I have to wonder if going off of it gives you an "influx" of more acetylcholine. So maybe it isn't not enough acetylcholine when you withdraw but too much.

Get a copy of the ABG they did so that your doctor can assess if it's from a cholinergic (too much) situation or a lack of acetylcholine situation.

This is a very important distinction to determine. If you get too much acetylcholine by going off of it, Mestinon would make that worse. If you are not getting enough, Mestinon, of course, would make that better.

I have no idea which it is. I hope you will give your docs that info about what Tramadol does to acetylcholine!

Annie

Thanks Annie...I definitely am getting copies.

I got a call from my primary care physician's office who referred me to a pain specialist after hearing the story. The specialist is waiting for the referral from the office and then will call me to schedule an appt.

Last night, I FINALLY got a call from a receptionist at my neuro's office that said, "The doctor said that since your issue does not directly relate to Myasthenia Gravis, you need to consult with your primary care doctor regarding this matter." I was so stunned. It was so cold and out of character. I mean my last note to him said my primary doc asked me to call you to discuss this matter. I didn't know what to say. I mean, what the heck was that about? This is a doc who had been running allergy tests for me!!

I can't wrap my brain around my doc saying this all doesn't concern him. Is that true? I mean, I couldn't walk on and off for most of the week and was choking with a hoarse and weak voice and had major breathing issues. So I am confused. The cause could be systemic stress from withdrawl of tramadol exacerbating MG sx. And if that is true, then I suppose it's not his problem?

But as you were saying Annie, if I had too much mestinon and that is what might have been causing the breathing to become worse each day----or the w/drawl of tramadol caused a flood of acetylcholine----doesn't that concern my neuro?


How can we know for sure?

debra

Debra, I am catching up and wanted to see how you were doing. I learned the very hard way that some meds have severe, really severe affects that docs just perhaps know about yet or seen enough, perhaps get lost in the system.

I have tried to report what happened to me thru channels of the FDA 2 times and was unimpressed. It took me years to get off Paxil. Years! I was down to half of a pill of the lowest does every other day yet when I stopped it I knew I had to not have anything to do but stay home and be prepared for the consequesnces for at minimum a month. I think it was 3 months before I started to really feel faily normal. Some of it was physical things especially the first 6 weeks. Strong physical stuff. But the most surprising was, and blessing, that I completely escaped the agoraphobia that the Paxil caused. That pill stole several years of my life. My brain wasnt made for it for sure.

I had asked my shrink for another antidepressant because the Paxil demanded I be on so much valium or lorazepam to sleep and not be constantly thrown into a state of anxieity over nothing. I asked if changing me to Serzone would help. He did and told me to go off the Paxil one day and over the next 5 days slowly increase the amount of serzone. By day 3 I was on the floor of my apartment buidling crawling out the door calling for a neighbor to take me to the ER. I was wretching over and over tho there was nothing left in me. My head was in horrific, explosive pain. I was hospitalized.

Annie59

What a scary story Annie! I am so you went through that but it gives me more info about how some people, including me, are just more sensitive to meds than anyone understands. And it plays into the story from last night.

I was talking to a friend about how to get off this med and she asked an impt question: is it impt to ever get off it? It is such a low dose at a half a pill per day(25mg/day) and I am having serious breathing problems without it....what if I cannot be transitioned off of it or it is too unsafe to do that? What would that mean?

Also, yesterday I learned that tramadol is a central nervous system depressant which means that it is contraindicated in MG. You think someone would have mentioned that to me!

These are great questions for the pain specialist. I have not gotten an appt yet so I really hope I hear tomorrow since I called on Friday for an update and did not hear back.

I am still doing well, actually, I am doing BETTER than I have since I started trying to get off of tramadol. Oh, the irony.

debra

Debra,

Got o Wikipedia (or link to it from a search on tramadol) - pretty good explaination there of how it work, adverse reactions, dependencies, withdrawal, etc. May give you some ideas for questions to ask pain specialist when you have your appointment.

FYI - keep paging down on the 'article' as it is quite long and appears to be at the end before it really is!