Morning all

First off - thank you ping, suev, stellatum, jana, ginne, Abby.... and everyone else I haven't mentioned - between answers to my own questions and reading your posts you guys have helped me understand what is going on on the MG front..... So I'm not going to hesitate to ask whats on my mind at this point...

I'm now 10 days out from the thymectomy and finally home - after I ended up going into crisis, getting slammed with 5 straight days of plasmapheresis, central lines, steroids and enough pain meds that made me hallucinate a very interesting conversation with two sumo wrestlers who stepped out of the paint swirls on the walls to discuss the merits of wrestling in pumpkin pie versus lemon meringe or italian ice.... but during all of it I managed to keep my act together (even the hallucinations ), cooperate the best I could with the nurses, docs, .... and concentrate on getting well enough to get home to my family.

BUT: now that I am home, I find myself falling apart emotionally / mentally.... whether it means hiding in my room or the bathroom so no one knows I'm crying - and it isn't solely from pain. Or that I keep waking up terrified that I'm going to find myself unable to move / talk / breathe again (I did not have the luxury of passing out / being knocked out when every muscle in my body decided to stop working at once...). OR that I find myself cringing when anyone comes to visit and wants to know how I am doing- 'cause while I know I am physically healing from the surgery itself, I have never in my life felt this weak or vulnerable... and to top it off: me, Ms Always Independent - I am actually physically and mentally relieved when one of my grown kids has found an excuse to stay home with me even though it is everything from inconvenient for them to an invasion of privacy for me..... Or the stupid things I find myself doing now: staring for hours on end at the same DVD playing over and over again- me a person who prefers to listen to TV for over 15 years yet never sat and watched it cause I've had too much else of interest to do... a pile of books waiting to be read - finally time to catch up - but I can't seem to bring myself to open any of them.... Lists of letters and emails to write - all sitting.... Friends I had intended to call and talk with that I never had enough time to just sit and chat with before all this began unless they were ill.... not a call made......My grandson bless his heart even tried bringing out my favorite toys to play with him (not his favorite which of course are guns, bows and arrows and his super hero cape... But my favorites - playdoh and our board games...) and it was all I could do to muster a smile for him let alone play.....

What on earth is wrong with me? The person I use to be / know myself to be has disappeared / gotten lost somewhere in a mind numbing zombie blank eyed fog.... And while I would like to blame it on all these new meds that I've never had to take before, I'm not sure that it is - especially all the emotional ups and downs that go from out and out apathy to downright terror/panic attack in a matter of minutes! (Another "first" for me today - daughter and I went for a quick round to the store just to walk / pick up coffee and I was in an absolute panic to get back home after about 10 minutes.....)

I don't know - what do you think considering this is what I am on right now:- pred is down to 20mg/day, Mestinon q4-6hr (been on that one for several months now...), Tramadol q8 as needed, fentyl patch (1 patch good for 3 days..)... and if I understand it right, I'll be starting yet another round of plasmapheresis by the first of the month..... Is it the drugs or am I losing my mind? Is this just part of dealing with MG I haven't encountered yet?

I read another one of your posts and you sound very sensitive to medication, just like me so I thought I should respond to your post. Tramadol is an opiate, like morphine and codeine, and it has the additional properties of SSRI/SNRI which make it messy and complicated and can mess with your mood. Also, it hits acetylcholine receptors (muscarinic and nicotinic) which is not good for myasthenics. The docs told me it was not addictive after my thymectomy but that is NOT true. Also, I am having respiratory problems getting off of it. It has been a year and they are just now trying to figure out what to do...I am on a tiny dose but I cannot breathe without it, my diaphragm starts giving out.

Fetanyl, if you google fetanyl and side effects, you will see that anxiety, agitation, depression or nervousness (mental and mood changes) come up on drugs.com. It is under the more impt. side effects to get help with right away. If you are having panic attacks in the middle of the night, it may be the patch.

That being said, you have been through hell, and some of your emotionality is to be expected and you need to be gentle with yourself. It is very difficult to recover from this surgery and takes time.

I hope this helps and you can find something for pain that is helpful and yet not hurtful to your body. Thinking of you, debra

Sounds like you could be having post surgical psychosis. I think it would be wise to run the symptoms by your surgeon, as there is no reason to be in such misery if you don't have to be.

http://www.ncbi.nlm.nih.gov/pubmed/16751164

You've been through a lot. Be kind to yourself.

Sounds to me like you are a completely normal person, having a completely normal emotional response.

Of course it is good to make sure that it is not one of the medications you are taking or something else that could be going on, but you have just had a fairly traumatic experience and out of the relatively protective environment of the hospital, finding yourself at home, wanting to go back to your previous life and activities and finding yourself more ill than you planned.

Just give yourself time, don't push yourself to do what you feel you can't.
when you wake up terrified, just remind yourself that this is a nightmare, just like you would if it was your grandson coming and telling you about the monster hiding in his closet.

What a sweet and sensitive grandson you have, bringing your favorite toys.
I am sure that this warms your heart and reminds you of why you want to make the effort, go through all this and get better...

Also, make sure that your breathing is OK, because possibly you are waking up in the middle of the night because of true breathing difficulties and not just being afraid of having them. This could also explain why you feel apprehensive when making a more significant physical effort (such as going out for coffee, which for you now is probably similar to climbing the Everest) So, maybe if there is no improvement a proper respiratory evaluation and a sleep study would be in place.

Raven, bless your HEART!! I'm always talking about Prednisone making me depressed -- even suicidal -- but, I had a breast biopsy 20+ years ago (benign) and came out of THAT very depressed, too. I did reasearch, and like 4-eyes said, post-surgery depression is VERY, VERY common. Some people have this reaction due to the anesthesia -- some to the IVs -- some to the drugs used afterwards -- and some due to the trauma. I'd say you might have a "touch" of all of these.

It can take SIX MONTHS or longer for the anesthesia to completely LEAVE your system. I visited my allergist -- who called another doctor (at Emory, I think) -- who said that it might help to eat -- get this.............FRIED foods (meats included)..........and drink a lot of water and tea. Apparently, the drugs "bind" to the oil/grease and the liquids flush them out of the body (or something like this) -- or the fried foods change the ph of the body (I really can't remember for sure). WHATEVER it was -- in a couple of days of eating burgers and fries (I still ate beef back then), I was feeling MUCH better. So, hang in there -- others HAVE been through this -- you are NOT alone -- it will get better -- just be kind to yourself.

I'd say to JUST go and get an anti-depressant -- but, it can take SIX weeks for them to kick-in. Of course, you might want to get an anti-depressant AND eat McDonalds, too!

BIG

Oh, and if you have never BEEN depressed -- you might not even know that what you are experiencing IS depression. It is a BOOGER -- wouldn't wish depression on my worst enemy. MG is a walk in the park compared to depression. But, it DOES get better!! I KNOW this is HARD!! Take ONE day at a time -- one MINUTE at a time. Try to find even ONE little thing that you want to do. Don't focus on all of the things that you USED to like doing.

Hang in there -- we are here -- you can talk about this -- ANYTIME!!! You are NOT losing your mind, I PROMISE!!!

Hi! It sounds a bit like you were on something akin to an "acid" trip. Ironically, it could be an acid balance problem in the body (metabolic/respiratory).

First of all, HUGE hugs to you. You've been through quite a traumatic experience and need a lot of time to heal, both physically and emotionally. It doesn't matter if they were kind to you, any trauma is so hard to deal with!

It sounds like the combination of drugs is having a psychotic effect on you. I've had steroids twice in my life and both times they made me rather bonkers, as our old friend Rachel would say. So, it could be a single drug, a combination of drugs or how those drugs are affecting your metabolic balance.

Has anyone checked your basic metabolic profile? That includes albumin, kidney and liver function, electrolytes, etc. It would be important to know how your body is able to process all of these drugs. They should make sure they aren't building up in your system!

Plasma can cause problems with fluids, albumin, electrolytes, etc. When those things are not in balance, they can cause some pretty big changes in your body. There are doctors who underestimate what that can do to a patient.

It's not unusual to experience some level of anxiety after what you've been through. Think about it. You were in a foreign place (hospital), with "foreign" people (doctors/nurses/techs) and have been given "foreign" substances. Not to mention that your chest was just cracked open. That might even cause some post-traumatic stress disorder. So it could be a combination of that and the drugs. You were in a position of "powerlessness" and that alone can be overwhelming and cause anxiety.

These are not small things! You need someone to help you, to reassure you. You need an assessment of the drugs and your body. You might even need a shoulder to cry on or someone to talk to. And staring endlessly at a DVD is comforting. My "go to" DVD's when I'm stressed are either survival movies (I know, strange right?) or ones like Pride & Prejudice or Sense & Sensibility. You need to escape from the real world because it's become way too real!

And may I say . . . screw the dishes. Life is not normal for you right now. Paper plates will do. The only important thing is getting you back to a proper balance so you can feel safe, loved and physically better. Your friends and family may not know exactly what you're going through but they will understand. Things are not business as usual and . . . THAT'S OKAY!!!

Panic attacks, which I am well acquainted with, are normal after what you've been through. You really should tell your doctor about them because they could also be from one of your drugs or a combo of them. Like those pain meds which cause you to enter another dimension or time travel or speak another language or whatever they're doing to you!

You can counteract panic attacks in a number of ways. You can leave the room you're in where one happens. Do they happen in only one room or everywhere? That's important to be aware of. You can put a cold washcloth on your neck/wrists to help. You can get angry. Yeah, angry. It's not good for MG to have huge swings of emotions but sometimes it's necessary. Anger and panic cannot exist in the body at the same time. Did you know that? My psychologist let me in on that little trick. And, yeah, staring at a DVD or the snow falling or birds or listening to music or playing computer games can all calm your mind and make the panic attacks better.

Ditto on what Debra said about the Tramdol. It can mess with MG and your brain.

I think the bottom line here is that you need to either see your doctor or have a conversation with them. Your primary doctor is the best one to see. If this is, as 4-eyes said, a post-surgical psychosis (don't let that term alone freak you out!), then you need medical care. Don't worry, it's usually a short-lived situation. If I'm going through pain, if I know it's going to end soon, that really helps!

Alice and Jana have given you great advice too. And support.

Don't assume anything. Just get checked out. Think of your environment, your food, your thoughts, your emotions as being there for YOU - your family too - and not the other way around. You have to slow down to a snail's pace and take care of yourself. No cleaning, no nothing. It's okay. There'll be plenty of time later to do all of that. Or hire a temp cleaning service to help.

Please, know that things will get better. In the meantime, call in the cavalry and get some good help. It's Friday . . . call your doctor now OR go to urgent care for advice. It might "freak" you out to think of going to the hospital for help but, if you have to, please do. You can be in control of the experience!

I'm babbling a little, sorry, but it just sounds like you are in dire need of medical care AND that intangible LOVE care. I hope you will feel better soon. If it helps to keep repeating that you're strong, you can handle this and it will be okay - or put signs up to that effect (seriously) - then do it. My "mantra" for trauma is: "You're okay." I found myself repeating that over and over again in 2004 after one of my medical traumas. It has become sort of a verbal meditation for when bad things happen.

Get some help and gentle, post-T hugs!

Annie

Ravenred,

I wanted to stop by and show my support. Although I haven't been in the hospital for MG, I can relate to many of the things you mention. I think you might be having a natural reaction to a horrible and unpredictable condition...MG. I don't think you are losing your mind at all.

It is possible it is the drugs, I notice Mestinon makes me nervous, but I don't think this is a common side effect. But mostly, I do think you are experiencing a natural reaction to a sudden change in life.

I often experience panic attacks when I do something that has previously made my body go limp, as I remember lying on the floor with no one around to help, and I just had to lay there until my strength came back enough to get into my bed so I could rest.

I am a mess emotionally and so sensitive to every comment that I often think I am crazy. I do think this will go away, or at least lesson once I accept that I am a new person, I think it will be the same for you. We have to find new ways to live and develop new habits after getting MG...it is a big shock and it takes so long to learn how to live again.

I hope you feel better soon. This is a great place for support while going through these hard times.

Tramadol certainly can cause hallucinations. So can fentanyl.

Are you taking this combo for something OTHER than post operative pain?

If a person's pain levels fall, say as you heal up, a high dose of both of those drugs will spill over and cause considerable side effects. Add into the mix... prednisone which can affect the brain (psychosis in some people) and it is a powerful combination!

So I'd discuss with your doctor, perhaps some medication adjustments. If your pain levels are coming down, getting off fentanyl would be first I'd think.

Debra, Annie, Alice MD, 4eyes, jana, desertflower, ping....

Thankfully it has gotten sorted out - granted the hard way (cholinergic crisis from too much Mestinon luckily I took everyone's advise and had made a doc apt and was in his office when I went capoop....) - but now I am literally off of everything except a small dose of Mestinon and relieved to be so as I most definitely feel / act more like myself even if it be a slower, sorer version;

But you are all also so so right about the rest.... - I have to learn to be gentle with myself and change some of the attitudes I was raised with that still color my reactions to some of the things I have recently experienced.

But I'm still at the stage of tryin to scrape that superwoman tattoo off my chest and admit I am a mere human being who needs help even with things I use to do with ease- help from those who have never seen me "weak" or "ill" because apparently I've been quite a good masquarade artist / found ways to compensate or have always managed to "push" my way thru....

I guess the hardest thing though for me is to acknowledge / get a handle on is that I have no control over what this disease may or may not do - the sheer unpredictability of it I find frightening / stressful.

I did talk to the doc about it and he somewhat reassured me that both crashes were somewhat "artificially induced" thru the surgery then meds but that my anxiety is real / "what you're feeling is legit - and no I do not think you are crazy..." But he wants me to try talking with a pscy/counselor/specialist that deals chronic illness.... and try to avoid the medication route if I can considering how much I over-react to meds /or they interfere with the MG..... now to find one - although you know, I think the crew here, while maybe most are not degree card carrying professionals, have been a godsend to my sanity as well as my wellbeing..... Thank you gals and guys....