Breathing problems....needing input please
 

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? :Noooo: 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

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,

Who wrote the script for the tramadol to begin with? I'm guessing it was the neuro and I'm guessing he is trying to distance himself now that you have had difficulties with it. Since your primary seems to be more astute on this matter, I would work everything through him. Let him know that as per his suggestion you contacted your neuro (who blew you off) and that if the primary wants you to consult with neuro would he please get with neuro first about WHY he wants neuro to see you...since tha's the only way the neuro will take the apt.

(Amazingly, in my experience, when you are able to point one doc to another doc, issues seem to disentegrate like kleenex in the rain!!)

My surgeon's on call doc wrote the script for me when oxycodone was not controlling the pain when I got home from the hospital after my full open chest thymectomy. I have no pain now and have been off the oxycodone for two months.

My primary's on call doc didn't say a whole lot about tramadol--just to call my neuro so he knows the situation and that she was referring me over to the pain specialist who is supposed to call me for an appt.

I wonder if the pain specialist will want to consult with my neuro anyway about whether I was getting too much or too little acetylcholine--bringing him on board?


Thanks, 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!

I got in on a cancellation to the pain specialist yesterday. He was very responsive and seemed to have worked a lot on getting people off of tramadol and had a couple of MG patients. He had not seen what I was going through though.

He said tramadol is seen as a dirty drug in Europe and very addictive and classified differently there than here even though I was told not to worry about it. He puts people on central-acting meds to help them with withdrawl sx but cannot use any of those meds with MG patients and esp. when I am having breathing issues. Usually he tells people you will feel like hell, probably the worst you have ever felt in your life, but you can do this on your own and it won't kill you. "I can't say that to you." I about cried.

He said I have two options. Stay on it forever. Or go to inpatient detox for a long time so they can monitor the withdrawl. Awful options. He said I shouldn't be on a med I don't need so I should at least go to the center and hear what they have to say. My husband thinks I should wait til I am stronger to even consider the idea.

Who wants to go off a med and feel the worst you have ever felt in your life and not be able to take anything to help and maybe die? I don't even know if they will understand what is happening to me. Are they even set up for respiratory problems or know anything about MG?

The doc said he thinks it was affecting breathing in 2 ways: from the tramadol standpoint and from the MG standpoint. Clearly, when I was choking and not breathing right the mestinon helped some. Also, when I added the tramadol, I no longer needed any extra mestinon. Therefore, both are an issue. I need to be taken care of from both sides of the equation. It is very complicated.

So, I went from getting no response from my doctor and the hospital believing it was anxiety to needing to get off this med either not at all or inpatient. I have no idea what to do.....debra

Debra, This guy sounds smart and sensible. You do NOT want to be on this drug forever. OMG. It may not take a long time to get off of it. They have to give you a drug to get you through the withdrawal. And they do have to monitor you!!!

I personally like the way he is talking because he is being honest and real. Yeah, it's tough. And, no, you should never have been allowed to be on it for more than a few days. Ticks me off. ;)

I hope you can figure out what's good for you.

Annie

Debra -
As sorry as I am to hear your news - I am super excited that you have found a GREAT pain doc. He sounds very knowledgeable and forthright. He would be the one I would want to go through this with.

I urge you to take the next step and go to the withdrawal center to meet with them and see what kind of program they recommend, what their knowledge level is of MG and how it might impact the withdrawal, etc.

Until you have this info - it will not be possible to make a fully informed decision. I'm so outraged that this happened to you - - they never should have let you be on this drug for so long. But now you have to investigate what it will take to detox from it.

Good luck - and pls. let us know what you decide.

The pain doc set up an assessment at a scary scary place. I think he is used to just taking people off the meds himself and had no idea what he was doing when he referred me. They talked to me over the phone to set up a time to come in. I asked a few key ?'s:

In addition to opiate withdrawal symptoms, are you equipped to handle a patient who walks, talks, swallows, and breathes normally one day and then suddenly decompensates in one or even all areas? He said to come in and the doc would answer that for me. So then I asked if they had oxygen. He said no. So I explained my situation a bit and how I needed a hospital and not a 12 step program. It turns out this is a psychiatric detox center and they assess you if they deem me you appropriate for the program then they just KEEP you there after they speak to you! Thank God I didn't show up! Can you imagine? I called the pain doc and told them and they are working on an appropriate referral....

In the meantime, I saw my neuro yesterday and it turns out he was out of town and wasn't getting my messages and there was all this miscommunication from his staff. He was not happy at all to hear what the pain doc said and thinks he is too severe. He believes if we can prove my diaphragm is strong, I can take a central acting med to help myself get off tramadol outpatient and he will help. He was astonished by the tramadol story and said I must be the most sensitive patient ever to medication and to side effects. And that being said, he believes that tramadol should probably be on the contraindicated list for MG--considering the effect it is having on my MG. He listened and validated me and didn't mention "anxiety" once.

We talked about the possibility of a cholinergic issue with all the mestinon I was taking and the w/drawal effects and he went over what that would look like and sure enough that is exactly what I looked like the morning I almost went back into the hospital. He totally gets it now. Thank God!!! I was sooooooo freaking out that he didn't get it and that he was going to continue to not want to be involved since he said it wasn't an MG issue at first. I am so happy. I mean WHO else is going to even understand any of this? It is so complicated.

He wants me to work on increasing my stamina for now though since my strength is great and take down my mestinon to see where my cardio issues are (if you remember the bp spikes and tachycardia were being controlled by mestinon). We are going to tackle one thing at a time. It's just been way too much. If this goes well, he is moving my IVIG from 5 days every 3 weeks to 4 weeks next cycle. Then we will look at tramadol.

Thanks for your outrage and encouragement. I really needed the support!!

debra

Yikes!! Thank goodness you didn't go to that pain center. (It and the pain doc sounded so good, too!)

But am really happy for you that your neuro is on your side and seems more than anxious to get this worked out!!

Good luck...pls keep us posted!

Good GRIEF !!!! Debra I am so glad you got the low down on that place before you went! What a scary scary situation. Stuff like this shouldnt happen in this country you would think. Just keeping you!!!!!! Wow that enrages me. Thank Heaven you have such a good head on your shoulders and was cautious. What you said about staying on the drug at a low dose to avoid any more risks with your body sure made sense to me. Some times another risk just isnt in our best interest. I believe if we come to know our bodies well our bodies will tell us if they are ready. Gosh I am glad you have the neuro you have and what happened at his office was straightened out. Another reason that time out to consider what was the correct next move worked for you.

Annie59 hug to you