Hospital Stay, What To Do Next

[Racer]

So I recently had a stay in the local hospital ICU. Not really sure what all happened, if I had seizures, medication issues, or if I am just crazy... It took days for them to stabilize my vitals, and eventually they released me with very little explanation of what happened! I spent most of the time in a very thick brain fog, drugged up on tons of meds, and dont really remember much of what doctors said or did.

A bunch of med changes and I feel like I am finally coming out of the brain fog. It all seems like it was some sort of nightmare/dream, like it really didn't happen.

I am now experiencing a nausea that is way worse then it was before. The nausea is bad enough that I have to force food into me. I am not eating enough and the weight is falling off rapid.

I had to go off the midodrine and am having trouble preventing blackouts. Since the hospital stay, I get really dizzy, have trouble with balance, loss of reflexes, nystagmus, bladder control trouble...

Doctors are at a lose and dont seem to have a clue about any of my issues. They ordered some tests and it will be months before tests are done and the results are in. They say this is the best they can do, that these things take time. I am losing weight rapidly and just cant wait that long! What do I do? My insurance wont cover someplace like Cleveland clinic so it seems I am running out of options?

[corina]

I'm so sorry to hear that Racer, not sure how to help you, just wanted to let you know that I'm thinking of you and hope they can speed up the tests for you.

[Tobiano]

I'm sorry to hear that too Racer. Perhaps you could request your medical record to help you piece together what happened there.

[Dizzysillyak]

sorry you had to go through such a traumatic experience. I'm not sure

what to think about how they decided to treat you and that you were stable enough to come home. Since you changed your meds tho maybe you had a bad reaction.

as far as weight loss tho maybe you could use smoothies made with organic rice protein powder. I make these everytime I'm having digestive problems now. Bananas and flax meal add calories. I use 3 servings per smoothie for extra protein.

Homemade meat broths, esp chicken, may help too. I typically add a few

veggies and a little overcooked soft meat for soup.

Hope you feel better soon. D

[jpjd59]

I think the previous post about requesting your medical records is a good idea. Since you were so out of it in the hospital the records may give you a clearer picture of what happened and what tests/results were done while you were there.

[Guest Hanice]

Did they do a brain scan? That doesn't really sound like pots to me. I hope your okay now and you get answers soon. Keep pushing to get your records. Please keep us updated.

[AshleyPooh]

Honestly, you kind of sound like you are going through an adrenal crisis. Did they check your adrenals (cortisol) at the hospital? I would find out. If not, you need to go back and demand the test because weight loss, dizziness, vomiting etc are signs of adrenal insufficiency gone serious. If you have a primary doctor, you might call him/her and ask to get you tested for adrenal insufficiency.

[Katybug]

I agree that you need to request a copy of the full medical records from your stay at the hospital. Then, I would see if one of your doctors is willing to try a phone consult with a dysautonomia specialist somewhere in the country. It might be at a research/teaching facility or someone independent like my POTS neuro. They/you would have to send the file to the consulting doc ahead of time but maybe they can give some suggestions for diagnostics, differential diagnoses, or treatments. (I'm assuming your docs aren't "experts" in the field.) My thoughts are with you...that's got to be a really tough experience.

[Racer]

I will work on getting the medical records. It will be interesting to read since it seemed many things happened off the record at that place!

Then, I would see if one of your doctors is willing to try a phone consult with a dysautonomia specialist somewhere in the country. It might be at a research/teaching facility or someone independent like my POTS neuro. They/you would have to send the file to the consulting doc ahead of time but maybe they can give some suggestions for diagnostics, differential diagnoses, or treatments. (I'm assuming your docs aren't "experts" in the field.) My thoughts are with you...that's got to be a really tough experience.

My doc admits she dosnt know much about what is going on, but she seems willing to learn and figure this all out. My cardiologist, the doctor who diagnosed me as having autonomic dysfunction seems to know all about autonomic dysfunction from the cardio side of things. It seems that the other doctors I have to literally teach how to take a simple orthostatic blood pressure reading. When the blood pressure reads normal, then they think I am crazy and question me as if I am a psych case!

[badhbt]

I hate the psych case thinking! My Neurologist sent me my bp readings last time I was in her office. She took them lying and standing. She made a comment in her letter that I was now POTS free. Ha I wish, then I wouldn't feel so crappy! I felt like writing her back and telling her that I did try to decrease my beta-blocker, but my heart rate shot up.

I have spent so much energy trying to CONVINCE Doctors that I am not just visiting them because I have nothing better to do.

[Racer]

This all has me so depressed. I have no support, no one to talk to... no one visited me in the hospital, or sent a card, or even said "get well". I know that shouldn't bother me, but it does. The best I got was judgmental comments from my boss, who thinks I did this all to myself. It would be so much easier to deal with if I had people around me who cared. I imagine these feelings do not help healing

[Katybug]

You have us! I'm sorry you are feeling so alone. This illness definitely teaches you that you have to be your own best friend. Maybe focusing on getting to the bottom of this particular episode will help you keep your mind busy and off these other things. Let us know if you need to talk.

[cupcakemomma5]

Sending you {{{hugs }}}

[corina]

I'm very sorry Racer, like Katybug said: you have us to talk to. I know it's different but much better than nothing Hope you will feel better!

[Akgirl]

Oh wow!! Tough times racer! Hang in there we are all cheering for you

[spinner]

Are you sure its ANS related? If so, you might want get to vanderbilt, cc, or mayo IF you can.

Edited July 24, 2013 by corina
medical advice

[Freaked]

If it makes you feel any better, I have had issues like yours. My BP fluctuates, but my vitals have been okay generally (touch wood). However they have kept me in for a few other issues before, including an episode where the vision in my right eye felt shadowed and I lost reflexes and coordination on that side, interspersed with episodes where it felt like my head was going to burst with pressure. The reflexes and sensation haven't fully come back, but my head scan was fine other than a cyst that they didn't think was a likely culprit. Had another ep where my whole spine went stiff and kept fading in and out of delerium.

Keeping food down has been a terrible problem for me at times; I lost a stone in two weeks at the start, and that put me underweight. Proton pump inhibitors have helped with this, and weirdly benzodiazepines, as I think some of it was sympathetic nervous system overactivity, or parasympathetic underactivity. An IV saline often helped me regain a lot of equilibrium. You need to keep some food down however you can. You'll get into a pretty bad state otherwise, if you're anything like me. Lately I've managed to keep myself going (barely) by shoving as much food into me as I can. I have raised pancreas and liver enzymes and i think I may have real blood volume issues; I also have the bladder probs you mentioned and have spent a lot of time in 'brain fog' and weakness even lying down.

POTS can get this bad at times if your system gets into a downward spiral, but I haven't been diagnosed with anything yet (appointment with autonomic specialist next week), so I can't offer you any theories there. I'm seriously starting to think underlying lupus, but haven't been tested and docs are at a loss and/or don't care. The psychosomatic drivel was also suggested to me.

[Racer]

Got some good news (I guess), the doctor was able to get most of the tests scheduled for next week! I am a bit afraid of what the tests might show, since we already talked about what it means and possible treatments if tests are positive! If I can get threw tomorrows appointment without the possibility of a pacemaker being needed and can just simply go on florinef, it will be a big relief on the cardiac side!