Really sick, looking for info
 

I have been having issues for a long time, but things have got much worse over the past 6 months or so. A couple weeks ago I seem to have triggered something after a intense workout. I have been in and out of the ER since.

I have had episodes of near-syncope for years, but the last couple weeks I have been fully blacking out and falling. I get dizzy going up and down stares. I feel nauseous when I eat a meal, and I have had constant headaches. When I am trying to sleep I stop breathing and gasp for air and cough.
For some time I have had trouble urinating, but it has got really bad the last couple weeks.
For years I have had nerve pain in my arms and hands, and my feet are constantly numb. I have had pain while swallowing certain foods, that has got worse.
I was born with issues with doubled vision that I am now having trouble suppressing, making things really hard to see properly at times.

Out of the tests that the ER did, the ekg showed that I have a prolonged qt interval, a echo showed mitral valve regurgitation. A chest xray, cat scan of brain and abdomen, and urine and blood tests were all normal.

My question is, is neuropathy something I should be looking at, does any of this look remotely like any type of neuropathy, and what type of things should I be googling, info I should be looking for?

Google Autonomic Neuropathy, Dysautonomia and POTS (Postural Orthostatic Tachycardia Syndrome.)

How is your heart rate and your blood pressure? I have POTS from Autonomic Neuropathy.

I have improved greatly but I was terribly ill. I have Peripheral Neuropathy that is often part of Autonomic Neuropathy.

I just wanted to add that you should probably see a cardiologist for further evaluation. I have tacychardia, heart block, and mitralvalve prolapse, as well. If you can get your heart problems under control, you can better focus on the PN.

Thanks!

My heart rate seems to be good, just sitting around it is in the low 50s, and when laying down it dips down into the high 30s.
My blood pressure seems to be fluctuating from to high to to low when it is tested (I dont have a way to test it at home).
I get the blackouts when I stand and start walking or when I bend down. Standing up fast then sitting back down makes my heart feel like its going to explode!
I have also had episodes where it feels like my heart is fluttering, and times it feels like it is beating one really hard beat, like it is punching me

I have a appointment at the end of the month to see one (soonest they would see me)

This sounds like classic autonomic dysfunction. Your appt with the cardiologist is a good idea. He can address the syncope (your BP may be dropping as you stand or bend over) as well as the QT interval and mitral valve. A heart rate in the 30 can also be related to dysautonomia...unless you are a marathon runner or something similar (in extremely great shape)

Do you take any other medicine, where side effects might be causing your symptoms?

My cardio doc said my heart was fine, did testing. I was incredibly ill with my POTS/Dysautonomia. We had no idea why I could not sit or walk etc. Well, the doc had no idea either...Thankfully he went to ask another doctor in the same office who said it could be Dysautonomia. Then he told me that is a possiblity. BUT, he didn't know what to do. :mad:

I have an integrative doctor that DOES thankfully. Sometimes it takes a lot of work to get all of the answers. I have researched for years. We do have to help ourselves also. I have certainly figured that out since I have CFS and POTS-Dysautonomia. Before that, another rare problem that ended up with surgery on my head to cut one of my vestibular nerves. A nightmare.

I have Mitral Valve Prolapse (MVP) too. According to the (3) cardiologists I have seen, so far, they have common information that MVP is something that is benign and will not cause a heart attack (unless of course, one has other heart issues).

If this is your case, you have one problem down....

Yes, I am (well was!) a elite/pro level athlete :), although I haven't been training and competing much the past couple years :(. The issues I have been having this year have made it impossible to even remotely ride or train at that level. Anyway, the low heart rate is normal for me

No, not even over the counter stuff (I have a bit of fear of medicine)

I seen a general physician today, seemed like a nice guy. I was a bit frustrated because he didnt seem to see the 'big picture', and seemed to want to ignore a bunch of my symptoms. He did admit though that although he has some theories, he does not know what is wrong, and that this is something that is going to take time and a lot of tests to figure out. He has a bunch of tests lined up for me (once I get medical assistance to pay for it)

I am not sure I will ever get a full proper diagnoses that explains all my issues, since my medical history from birth is so complicated, and shot full of holes.

To sum up a bit, from birth I had developmental issues, dx of autism at age 6, years of different therapies (threw school system), dx of numerous learning disabilities, have speech/communications issues (use alt communication), sensory integration issues, motor tics, aura migraines.... add the fact that I lived in a abusive house, were poor with no health insurence. I didnt get the proper help that I needed, and my parents had lost most of the paperwork that talked about my childhood dxes, and could have cared less to remember any of it.
Past issues seem to be irrelevant to doctors, who only want to take into account the current symptoms, and if I dare mention that I have a autism dx, I get treated and talked to like a kid, and not taken remotely serious

One other thing about Mitral Valve Prolapse, if you have any dental work done, or really any type of surgery, you need to be on antibiotics before the procedure.

Anyone, what sort of tests would show autonomic dysfunction? Can a regular general physician look for this, or is this something you go to a specialist for?


So far, I have had a brain ct, abdomen ct, 3 chest xrays, 3 ekgs, a echo, blood drawn 5 times, urine 3 times

Tests that they want to do, a exercise stress test, tilt table test, 24h ECG, sleep study, and neuro eval.

Thanks! No one had told me that!

The tests you said they want to do would be a good start. I'd suggest getting those first.

I have been noticing something that the doctors seemed to want to ignore. Most of my symptoms of syncope/near syncope are when I stand up (especially after sleeping), bend over, going up stairs, reaching up high to get something.
My heart will thump really hard, or beat really fast during the syncope episodes.

Today I decided to wear my exercise heart rate monitor to see my heart rate when I did these things. When laying I waited for my HR to dip to low 60s-mid 50s, then stood up, and my HR would spike to around 100-110 before dropping back down. A spike of 35bpm and I feel the symptoms, while a spike of 45 and I feel a near blackout.

I was told in the hospital that the HR spike was normal, nothing is wrong with that. The explanation was because my HR rises, that rising was normal, that HR dropping when standing would be a bad thing.
This seems to contradict what I read online, so I am wondering if a HR spike of 35-50 bpm really is normal range.

That is not a normal heart rate response to standing. It may be beating faster to accomadate for a drop in your blood pressure which is what you would ideally want to measure. Your PCP can do orthostatic vital signs at the office or you can buy an automatic BP sensor and do it yourself at home. You may be getting faint because your blood pressure is dropping when you stand up.

From wikipedia
 

Treatment

Individuals with mitral valve prolapse, particularly those without symptoms, often require no treatment.[20] Treatment with magnesium supplements may help reduce symptoms of MVP.[21] Those with mitral valve prolapse and symptoms of dysautonomia (palpitations, chest pain) may benefit from beta-blockers (e.g., propranolol). Patients with prior stroke and/or atrial fibrillation may require blood thinners, such as aspirin or warfarin. In rare instances when mitral valve prolapse is associated with severe mitral regurgitation, mitral valve repair or surgical replacement may be necessary. Mitral valve repair is generally considered preferable to replacement. Current ACC/AHA guidelines promote repair of mitral valve in patients before symptoms of heart failure develop. Symptomatic patients, those with evidence of diminished left ventricular function, or left ventricular dilatation need urgent attention.

[edit] Prevention of infective endocarditis

Individuals with MVP are at higher risk of bacterial infection of the heart, called infective endocarditis. This risk is approximately three- to eightfold the risk of infective endocarditis in the general population.[1] Until 2007, the American Heart Association recommended prescribing antibiotics before invasive procedures, including those in dental surgery. Thereafter, they concluded that "prophylaxis for dental procedures should be recommended only for patients with underlying cardiac conditions associated with the highest risk of adverse outcome from infective endocarditis." [22]

I had an aortic valve repair in 2007. It took care of a lot of issues (before new ones arose)

I was at the cardiologist the other day, he said the same thing about the heart rate. He didnt do the standing up blood pressure test, and ruled out the need for a tilt table test. He gave me the idea that because I know I have problems blacking out when standing up, that there really is no need to waist time and money to confirm it.
So, the plan is to figure out what is causing the issue, by wearing a heart monitor for two weeks to record the events, then figure out treatment