My neuro changed my prednisone dose from every other day to every day when I started having MG problems last week and I began to get better with both strength and symptoms. My IVIG has gone from 5 days every 14 days to 5 days every 21 days for the last two cycles. My strength was improving....

In the meantime, I have been trying to get off tramadol from my thymectomy surgery since the end of December. Since then, I have had a combination of all of these sx at some point: diarrhea, shakiness, chills, nausea, night sweats, sneezing, lost 4lbs this week, loss of appetite, and sweating. Tingling in feet started within first week of tramadol withdrawl as did diarrhea, insomnia on and off, sneezing and loss of appetite and all have persisted.

After dropping my tramadol dose just slightly, I started getting winded up the stairs. Then I went for a walk and stumble and fell and couldn't walk for an hour. The next day I was fine until dinner when I started choking, breathing increased astronomically and I lost all strength in my legs and couldn't even get out of a chair. I went to the ER which was horrible!!

They did ABG's and said I was normal (see: hyperventilating I found out later) and my oxygen saturation was 97% and up so they said it was anxiety and sent me home. The only good news is that my strength has improved. I am still having trouble breathing. My voice is very weak and hoarse and I have a cough that sounds like just air at times between mestinon doses. I can count to the 20's. My respirations are 22-30 at rest and very high if I do anything, even speak. I raised my mestinon a bit which my neuro okayed which has just got me by so far. It's been since Sunday.

Oh, my doc ordered pulmonary function tests and they did not perform even one! I asked for oxygen and they said I didn't need it and wouldn't give it to me. The doc ordered a hydration IV and then they didn't give it and when I asked they said the orders weren't signed. No one notified my neuro I was in hospital, I had to page him twice from the ER 12 hours later!!

Oh, and I forgot to tell them I was on tramadol since I take so many meds so they might of ran a tox screen and thought I was a illicit drug user.

How do you know if it's MG vs tramadol withdrawl? What do you do to get through it? How do I know when to go to the hospital when all my sx were considered anxiety? What do I do?

debra

How terribly frustrating an ER visit is when it solves nothing and increases stress.

That said maybe a few ideas for future:

Write down all your meds on a 3x5 index card.
Keep it updated whenever you have a change in meds
Put it in your wallet with your health insurance card.
Your neuro's name and contact info should be on the card.

Additionally, I would make apt with your neuro now. Address the changes in status you have. And then try to get his/her input about what you can do to manufacture a better outcome with the ER staff in future. Is there something that he can put in your Hospital file that would cause them to get their 'act' together when/if you have to go to ER. (IF you handle it right, some neuro's get annoyed when ER staff refuses to contact them and get it corrected off line. Other neuros could care less. Hopefully, yours is one of the former!)

Hope you feel better soon.

PS. You have a much better chance for a good outcome in an ER if your doc has privledges at that hospital.

Debra, You shouldnt have to fight that hard to get treated. Is there another ER you can go to? I have actually 2 in my town to chose from and if I had only the one that took me in from a 911 call I would be out of luck too as it was similar. I WAS given oxygen but after the young ER doc did a standard chest xray and anounced I did NOT have diaphragm paralysis it was all down hill. I didnt bother trying to tell him it would take a way better doc than him AND a moving xray called a sniff test to show that half my diaphragm doesnt move.

When he came back in at the end and lectured saying "when are you going to stop doing thiis" meaning coming in for nothing I tried to speak to him but begam to lose my voice as breathing was so weak....and he actually at that point stopped, screwed up his face in disapproval saying "What's that!! You were breathing just fine!" in other works he didnt believe I was genuinelly losing my voice from lack of muslce strenght. He was horrible. I finally yelled at him weakly fine send me home.........I'll end up back!

I have never been back to that hosp nor would that work with him having documented his cruel idiot thinking.

Annie59

Debra, Start by bringing this quote in to the ER. It's from the book "Neuromuscular Junction Disorders: Diagnosis and Treatment" by Dr. Matthew Meriggioli, Dr. James F. Howard, Jr. and Dr. C. Michel Harper. It explains why what MGers have is NOT anxiety.

“Arterial blood gas measurements are a relatively
insensitive measure of impending respiratory
decompensation in MG since the initial changes are
consistent with hyperventilation and are usually
attributed to anxiety. By the time CO2 retention
occurs, the respiratory muscles have already
begun to decompensate.”

Decompensate in this quote means weakening. You know doctors, they can't use simple words.

Your ER doctors are jaded and need reeducating, in my opinion. What other drugs are you on? You HAVE TO inform the ER of everything you are taking, even over the counter drugs. The very fact that you didn't say something about Tramadol may make them suspect you of "using." ER docs are always on the lookout for drug users. Sad but true. A mix of things could be harming you as well. And you shouldn't have oxygen until they do an ABG because being on it skews the results. I don't think you needed oxygen either but they should have walked you around with an oximeter to know for sure. Shortness of breath can be caused by a number of things, not only MG.

They should've, at the very least, done basic spirometry and MIP and MEP. You can't tell by looking how someone with MG is. Can they tell by looking if someone has a broken bone or sepsis? Well, if the bone is sticking out through the skin they can.

Tramadol is an opiate and is highly addictive. It is also hard to withdraw from. Have you read the drug insert? That's the problem with the prescribing of drugs. Doctors don't read the inserts and neither do patients. You need to read it BEFORE you get it. Some drugs are very hard to get off of. Long term use of drugs like this are not good for MGers. Most doctors will tell a patient to switch to Tylenol or Ibuprofen as quickly as possible after surgery.

Tramadol also inhibits both nicotinic and muscarinic acetylcholine receptors. When you try to go off of the drug, you are not only getting bad withdrawal effects but may be getting a "surge" of acetylcholine. You need an expert to help you withdraw from the drug and it may need to be done in a hospital setting. Withdrawal from these drugs can have seriously harmful effects on your body and should not be pooh-poohed by anyone. Here's a little light reading for you.

http://www.mayoclinic.com/health/dru...before%2Dusing

http://www.mayoclinic.com/health/dru...side%2Deffects

http://ajp.psychiatryonline.org/cgi/...ll/161/12/2326

http://www.ionchannels.org/showabstr...?pmid=12010769

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1573343/

http://www.ionchannels.org/showabstr...?pmid=17380034

It's not "fun" to do all the reading about the drugs you're taking but it's absolutely necessary. Like how some drugs cannot be taken with grapefruit. You need to know these things.

Your neuro needs to be in the loop on this. He should've recommended you transition off of Tramadol quickly after the thymectomy. No, I'm not a doctor but this drug is not good for MGers on a long term basis.

Mrs. D. could speak to this better. It doesn't take long at all for the body to become addicted to an opiate. They have ways to help you go off of one. So ask to be referred to a pain expert to help you with this, okay? To do it on your own is dangerous at this point.

If you can't take a breath in or out, can't swallow or are overall weaker, or suddenly weaker, go to the ER or dial 911. I hope you get help soon.

Annie

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