For two years since I had hernia surgery and a broken wrist with RSD I've been sick.

DX as anesthesia reaction then panic attack, and now dyautonomia. Lab results are mostly normal, other than very low BP with high pulse and high norenephrine levels. I also have uti and viral infections that don't seem to heal. Also bad osteoporosis---3.5 in my spine and kidney stones. My past medical history includes a long period of heavy steriod use (with a 60 lb wieght gain) and a one time addisonian crisis with anesthesia 20 years ago.

So they now say I have Dysautonomia. But what does this mean? I'm on beta blockers and have slowed having the night "spells" of crashing BP, sweat, short breath, and heart racing--in short feeling as tho I'm about to die--no drama--it REALLY feels like I'm about to die! Pulse has dropped on Beta blockers but BP is still low--and body temp. Problem is I feel pretty "down" on them.

Is this to be my life now? What is causing this? Is there no cure?

Sandy Sims

Sorry to hear what you are going through but you found the group that pretty much experiences all the same things.

Unfortunately not much is known on the cause and treatments for dysautonomia and it sucks to say that there really is no cure.

Betablockers will help with the fluctuating bp however they come with a list of side effects. Cold hands and feet, fatigue and insomnia to name a few.

Don't worry we all feel like we're gonna die and it's a horrible feeling.

We're here to help.

So the question is--am I gonna die? My blood pressure seems completely out of control.

Today I was SO low and my BP and pulse were both low I cut my beta blocker in half.

Now I'm feeling better--so I take my BP to see what it means. 160/90 pulse 66? I have NEVER had high BP--and that pulse is very low for me. Lately I'm doing good to get a 100/70 with a pulse of 105 or so. Earlier this AM it was 97/79 pulse 77. I felt less shocky than usual but quite blue and down for no reason.

Now I feel great--other than a slight headache--but my BP is too high. Or is it?GAWD this is driving me NUTS!!!

Oh--b4 I forget. Thanks HUge for answering--even if it's just to say,"Me too." This is the loneliest feeling I've ever had. Most doctors look at me like I'm nuts--for sure not sick--others give me that sad face like I'm dying. Niether of these responses is much help. Mostly it seems they just want to get me out of the office and NOT scedule follow ups for months at a time--i.e. get rid of me--thinking maybe I'll magically get better--or maybe die? I'd call my endo doc about this--but last time I called he never even called back.

Again, tanks for giving me a place to vent. It helps--I think.

Sandy

My doc's wife actually HAS dys. So he pegged it right off the bat (after 2 years of seeingother docs that is). Seems to know it's real--but also seems to be keeping me at arms length--and is always hunting for the door.

Sleep study?They did a holter monitor on my heart--it stopped for 3 seconds while I was sleeping--did stress test--shows some odd stuff but it goes away as I excercise.

But there IS a sleep clinic there so I'll ask about that at my next appt. My luck would be that'll be the ONE night I don't crash tho.

Sandy

I am sorry to hear about what you are going through, but you are not alone. I only recently found the forum myself. Having Dysautonomia, or the other disorders you will hear about on the forum can leave you feeling helpless and alone. I think it is safe to say we have all had some doctor give us the your crazy look, or be condesending. That is why it is so important to find a good doctor, one you can talk to, and one that takes you seriously. Many of them have no idea what it is like to feel as we do, so they dismiss us, or they really don't know what to do with us. Many of us have had trips to the emergency room where again the doctor's don't understand what it is like. Having your heart race, or chest pain, or fainting, or BP crashing, dizziness, palpitations, panic attacks... and of course the list goes on. I guess my point is you are not alone. I for one found some piece of mind just reading about other people that are going through similar events. My BP tends to run low and I have to watch for dizziness or feeling faint. Before I got a betablocker, I had tachicardia and palpitations. Fatigue, shortness of breath, chest pain, anxiety, headaches, visual disturbances, etc.... I also have IBS, Acid reflux, along with others. I found out about mine after childbirth and a surgery kicked it up again. There is no cure but it will get better. You will have good times and bad, but I am hopeful you will find the correct combination of support and medication that will work for you. Lean on your family, try exercise, relaxation techniques, a positive attitude is very hard to hold on to, but it will do wonders. I hope you can find a doctor you can speak with as well. Fluid loading is very important, and I would mention salt intake but with your BP being 160/90 you probably should not do that. Eating smaller more frequent meals helps. Eating a big meal can affect your blood pressure lowering it, as more blood is pumped to your stomach. I would also wonder is you have been checked out by a cardiologist. I found my cardiologist to be my best source of information, he was the one that diagnosed me with dyautonomia, and MVP. You will want to avoid alcohol, caffeine, and sugar. Sugar is a really big one to avoid, any stimulant kicks in the adrenaline surges that mess us up. Getting adequate rest helps, that is if you can sleep in the first place. Keeping your schedule constant also helps. That is why exercise is so important, anything that helps regulate the Autonomic nervous system is critical. Simply put it helps your body find its balance again. That is the frusterating part, keeping that balance. I have had years with really no problem or minor problems, and then at times my system gets out of whack. Don't give up! Don't give in! Focus on your successes and your good days. Educate yourself, I cannot stress that enough. I got tired of being dismissed by doctor's, and being scared and not knowing what do do, so I began doing research, I read everything I can find on dysautonomia and I have found many answers, so that when I do need medical help I can talk with a doctor calmly and with some knowledge to back me up. I think I have rambled on enough for now, but please hang in there and know you are not alone. You are not lost and you will find yourself again. Take care!!! Good luck with the sleep study, I hope you find some answers.

Check out the success stories on the forum, it will help.

This message has been edited. Last edited by: Enigma,

Is there any connection between a broken wrist with RSD and dysautonima?

I guess this is crazy--but I'd REALLY like to know WHY this is happening to me!!!!

Sandy

BTW I asked my doc why--he said--and I quote BTSOOM (the letters mean beats the sh#t our of me)

Somehow this didn't inspire me much.

Sandy

I have been seeing doctors for two years now. Some say I'm crazy--others just look at me sadly and say nothing. Yesterday the ONE doctor who I thought was helping me with Beta Blockers just had his nurse say he wouldn't be seeing me anymore and cancelled my appointment.

I have dysautonomia and MVP. Norenephrine levels are high--(the only labs showing abnormal) pulse is high--BP is very low--tho it suddenly jumped to 160 over 90 after 3 days of Beta blockers so now I'm unsure about them too.

Past history of prolonged steroid use with 60 lb weight gain and one time Addisonion crisis under anesthesia--and recent past history of multiple fx of my arm and wrist with burning pain from a misplaced pin (Causalgia or RSD). The hand doc confirmed patchy osteoporosis in the hand--and pain stopped for two days with sympathetic nerve block so he confirmed it WAS RSD. Which is ANOTHER term --like dysautonomia --docs "pull a face" if you tell them. <sighs>

This all started soon after I broke my arm then I got a hernia swimming in phys therapy that required surgery. I started waking up in the middle of the night wet with sweat, shaking hard all over, dizzy and disoriented with severe nausea. First the ER said it was an anesthesia reaction--but as it continued they called it panic attacks.

I gotta say I call it feeling like I'm going to die.

For two years now this has continued. New symptoms come and go, very tired but can't sleep longer than 4 hours, severe neck pain, blurred vision, chest pain, ear ringing, heat intolerance, vitamin D deficiency--and constant UTI infections and herpes infections are just the tip of the list. But the worst is waking up 3 hours after I go to bed with a temp of 97, BP 70/40 pulse 125--heart pounding, chest hurting, short of breath, disoriented and feeling like I'm dying. I know this sounds like high drama, but what do you say when it's the truth? I go to the ER and they run an IV, give me ativan and phenergan, send me home--it wears off --I wake up--and it all comes back and now I have $1,000 co pay to go with my other troubles.

Finally, this doctor discovered he couldn't get a BP on me standing up--at all. He pulled an odd face. Says it's dysautonomia--puts me on Beta blockers that seem to be helping some. Then refuses to see me again yesterday--his nurse saying there's nothing he can do for me --before I can even tell him this is working.

No my thyroid is not abnormal--the problem is not much is. My GP ran blood work and said--you're healthy--normal--period,

I did not throw up on his shoes--wanted to--but did not. <smiles>

Stress test showed some st troubles at rest but they resolve as I exercise so they called it "borderline abnormal."

I went to a psyche Doc since my GP seemed to think this was "all in my head". I really hoped it was! He ran tons of tests--my memory is affected--but nothing else showed up. He plainly said I was not crazy--I was sick--and sent me for a NEURO workup

NEURO workup showed all normal--except for some small lesions they called "demilinating" disorder--the NEURO doc says it means nothing--I don't have MS--but he'd stick my spine if I REALLY thought I wanted that. Is he kidding? Past that it seems the images show my old upper neck injury is compressing a nerve--but it ONLY hurts when my BP is on the floor.

I've written too much. I guess now you see why doctors all run from me. But I need help--do you know ANY doctors in Cape Coral Florida who might have a clue how to help me? Can you give me ANY advice how not to overwhelm them so they refuse to see me at all? How do I communicate this to them in the 5 minutes they have allowed to speak to me?

Sick in the sunshine state--and now without a doctor either!

Sandy

Thank you for your response. I HAD intended to ask for a sleep study yesterday at my visit--til my doctor said he had no more treatment options for me and sent me home. I see my cardio doc Monday and hope he won't bail on me as well. But my list is already too long--a tilt table test, a sleep stufy and a refferral to a doc in Pensacola who actually HAS this and who might understand. Three things I want--BEFORE I even appraoch the subject of beta blockers that helped great for a week then my BP jumped to 160/90 so I had to cut them in half--which ticked off the Endo doc that I didn't "follow" instructions--and I guess--have a stroke?

GEEESH I must've been Hitler in a previous life!!!
<chuckles>

Thanks again!

Sandy

Sandy - I too was recently diagnosed with dysautonomia. I was fortunate enough to have my GP get me in to see a good neurologist who actually specializes in this area. I had autonomic testing, which was very helpful. I had an abnormal tilt table test, and an abnormal sweat test. I have MVP too with moderate regurg. and scoliosis. I have 3 kids and I'm a music teacher - when I got sick 2-1/2 months ago I couldn't believe it. At first my GP told me I had IBS, because I was having terrible abdominal cramps, but those passed, and what was left was severe muscle weakness, dizziness, fatigue, nausea. Life was turned upside down. It's very hard. I can barely play the guitar and piano because my arms get so tired and my hands stiffen up something fierce. It's a disorder with symptoms that can fall into many a disorder, and I believe it's something that the medical world is just beginning to understand.

I see Dr. Barboi at Froedtert Hospital in Milwaukee, WI. He told me if I had landed in anyone else's office they would probably have scratched their heads and sent me to another specialist. The disorder is difficult to diagnose and even harder to manage. At one point I considered a trip to Mayo clinic - is that a possibility for you?

I asked Dr. Barboi the same questions you are asking. Is this it? Is there a treatment? I am on blood pressure meds now (just started) but what he told me is that you have to be very strict about alternating periods of activity with periods of rest. I am still learning about how to treat it - am thinking of trying acupuncture/homeopathy - but there is no simple "quick fix."

Hang in there. Know that you're not crazy and you're not alone.

Heidi

Thanks for being out there guys. If not, I don't know what I'd do right now.

BTW I also have scoliosis. Does this mean something?

Geesh so much I don't know!

Went swimming today--felt pretty good--excericse really helps. Then got a shocking call--my brother had a heart attack--due ofr surgery. I actually felt the adrenaline surge--was VERy odd--skins burns now==nausea immediately--now I'm shaking. Great. Now what do I do to turn it off?

Anyway, thanks for being there guys--really--it helps to know someone else has to deal with this!

Sandy

I've never had any trouble with my back--other than it curves sideways a bit. Just didn'tknow it mattered.

Sandy

The only reason I mentioned the scoliosis (which is severe for me and for which I had a fusion at age 19), is that there is a link between dysautonomia and scoliosis, in particular the familial type of dys.

Sorry about your brother - hope he is OK. Take care.

thanks for letting me know about this--will give me another thing on the "list" to prove myself with--and we ALL know how that comes in handy, right? <smiles>

Sandy

Rosie - I wore the Milwaukee brace for a year but it was too late, I had already grown by 7th grade. My curve was 47 degrees when they did the fusion. Now it is 25. So, that is good but other complications have occurred, such as deg. disc disease and arthritis. It's not too bad - I have learned to live with it.

Take care, all!

Heidi