Racer

It seems that I have hit a point of not getting sufficient nutrition to maintain my weight. I was underweight to begin with before I started rapidly loosing weight this month. I am taking zofran and it works okay enough to force down 2-3 really small meals. I tried tigan, but it didnt work good enough for me. I keep being told to eat a bunch of really small meals threwout the day, but the problem is that the zofran does not last long enough, or good enough, for me to do that. I am at the point that the smell of food is making me nauseated thinking about trying to eat. They scheduled a gastric empty test that is in a couple weeks. I am really scared that if I dont figure things out I might need a feeding tube or something like that. Not sure how I am going to make it four week till I next talk to the doctor about test results. What do I do if I think I hit a critical point of malnutrition? Is there specific type of help I should be looking for?

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!

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

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! 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!

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?

I seen a gastro. for nausea/vomiting, who ordered I have a upper GI scope done. It was a total nightmare! I was never told that I would be put asleep for this procedure and only figured it out when I was inhaling gas (TO LATE!). Having not taken the midodrine and having nurses totally clueless about dysautonomia was a recipe for disaster. They forced me to stand immediately after waking obviously causing me to get syncopal. I kept yelling (in my drugged up state) "blood pressure" only to be told that they took my BP (when I was laying duh) and it was fine. Really proves the total incompetence of some places! Results of the GI were totally normal, absolutely nothing out of the ordinary that would explain my nausea/vomiting, pain when swallowing. The solution for the gastro was for me to try a acid blocker and talk to my neurologist. Already tried acid blocker, didn't work! The neurologist cure all is topamax that I have been taking. So the upper GI was the only test the gastro was willing to run and is saying this is a neuro issue. The neuro did not run any tests at all and simply gave me topamax. Meanwhile I keep loosing weight, but the doctor is not worried even that I am underweight. I guess you need to hit a certain dying underweight malnourished point before they take you serious? It takes many months to get appointments at these places, only to be given tiny little baby steps, like "increase topamax and see me in 6 months to see if it worked" so frustrating ugggg why am I not being taken serious? They act like they are treating a person for the common cold!

I get that sensation pre/during headaches/migraines. Topamax stopped the sensation for me (so far), so in my case I am sure it was related to migraine activity. You might want to talk to your neurologist about it.

Odds of getting lyme from a tick are slim at best. I am a wildlife photographer (mostly hobby) and spend tons of time in close proximity with deer and other wildlife. I usually end up with a couple tics per year. I get lyme tests and have always been negative. Ether I am the luckiest person in the world, or this whole lyme thing is rare and just gets hyped up

How long did it take before you see results from the topamax?

First day of topamax went good, no side effects so far. Not sure if it is possible, but I feel like it evened out my mood (I drastically needed a day like this!). Guess it will take a few weeks till I know if it works.

In my journey to try to cure my nausea/vomiting, my doctor referred me to a gastroenterologist, who suggested I see a neurologist. These doctors sort of came to the same conclusion, that because I have a mild headache most days, that the nausea MUST be caused by migraines. I do experience migraines with a aura on occasion, and it is defiantly possible that my nausea is from migraines I guess. The issue I have is that they seem to just jump to this conclusion. Surely a person could have headaches/migraines and nausea caused by a different issue related to autonomic dysfunction? Is there any tests to diagnose the cause of nausea? I was prescribed topamax for this. If it doesn't help the nausea, is this normal for people to take this for daily headaches alone?

I went to my gastro visit today. The doctor was extremely thorough and seemed to understand dysautonomia at least a bit. I left the appointment a little frustrated with no help or suggestions at all. I am scheduled for a "EGD enteroscopy", a month from now. Basically he said the nausea/vomiting could be related to dysautonomia, but would need to check for everything else first before he could say for sure. So a test a month from now, then a visit a month from then.... why does everything absolutely have to take so long??? I am so afraid It is going to be another year before they run out of tests to run and say I have xyz, here are some pills to make you feel better

I have a appointment coming up to see a gastro, any tips and what should I expect? My main issue is with nausea and vomiting when trying to eat anything during the 5-6 hours after getting up in the morning. Other issue, I am seriously embarrassed to talk about is trouble with constipation and related issues. Should I expect to need to explain what dysautonomia is to this doctor?

I assume your talking about a cardiologist who is your doctor? I ask because a cardiac electrophysiologist specializes in heart rhythm, and would be the only one I would trust saying if it is okay or not.

These heart rates are not normal max hr! A person could very easily die from a hr of 275! Surely no cardiologist would be okay with someone exercising at that range? My understanding is that no one reaches 275 without it being a consequence of a abnormal rhythm?

Do you always read your bp at the same spot? It is my understanding that it is possible for a person to get drastically different reading at different areas of the legs and arms. Is it possible that a person can have blood pooling in the legs and arms, show a normal bp on the arms/legs, yet have a low blood volume reaching the brain? Or maybe your problem was never from the low bp, but instead pots? Regardless, the criteria for pots is the hr increase without the bp drop, so I imagine most with pots experience this?

I experience anxiety, bouts of depression, sensory issues, motor tics... I dont take any medication for those problems and had always refused to take psych meds. A couple weeks ago I started taking magnesium oxide, prescribed to me for heart arrhythmia. It has not been that effective for palpitations, but it has been sooo awesome for my tics, sensory issues, and mood. I feel so much more calm and relaxed when it is in my system, it is so great. Amazing there are so many extremely harsh pysch meds out there given as the first line of treatment, and yet a $4 OTC supplement from walmart makes me feel so good

The whole process took about a year from the er visit, to a actual dx and treatment. I wish I would have been a little more aggressive since I settled for way to many "increase water and salt" before I decided to try medication. I guess my experience is a bit different in that I have had issues/disability since childhood, and things were very gradual over the years. It was easy to ignore worsening symptoms, and it wasn't till I was fainting multiple times a day that I decided to seek help.

I wasn't allowed to eat or drink anything the night/morning before the test. If you faint, it will probably be a bit different from your normal fainting experience. Usually when I faint, I am out really quick, usually before I can reach a chair again. The TTT was a bit worse for me. I felt like being strapped to the table prevented a quick faint, and instead it seemed to all happen in slooooow motion. I was given IV saline after, and felt a bit messed up for a couple days, but the whole thing was well worth it, since it got me a diagnoses and some much needed medication!

I just say that I am having a episode of low blood pressure (usually the case). It seems that most people understand what low blood sugar or dehydration feels like, and can understand that my issue is similar. If that dosn't work, I just blame it on a migraine.

This is what I could find on "polycolonial gammopathy". Really worth watching the youtube video!!! http://medical-dictionary.thefreedictionary.com/polyclonal+gammopathy http://flipper.diff.org/app/items/377 http://www.youtube.com/watch?v=bssB3ZX0oKw

I guess I am lucky, the first doctor I went to diagnosed me. Went to the ER one day because I kept fainting and the ER refereed me to a cardiologist who (after a bazillion tests) diagnosed me.

Yes, midodrine only lasts 4-5 hours max, so I would imagine most people who take midodrine experience the crash after it wears off. It seems the average dosage is 2-3 times a day for this reason. I can do anything when the med is in my system, but when my third pill of the day wears off it is time for me to relax and stay sitting

My doctor said my blood tests were normal, and I trust him, but reviewing the record shows slightly low wbc, high mo%, and high ba%, all outside of normal range. He said wbc was not low enough to worry, and seemed to brush aside the mo% and ba% as insignificant? Anyone know what these abbreviations mean?

I guess I keep second guessing myself. Do I actually have problems or is it all in my head. I know it is silly, I just hear a friend who called me a hypochondriac. I know I shouldn't let stuff like that bother me, but how do I know when the symptoms are physical or psychological? Are many of my symptoms stress related or are they really autonomic related... I can go on in a endless cycle of questioning myself. My experience, if you ask a doctor "is this all in my head", they will not take your problem serious.