autonomic problems

Just wondering how many people have motility problems on here that have been diagnosed with any dysautonomia/autonomic problems?

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A cardiologist told me I have autonomic dysfunction, but I have not had any neuro testing to confirm this. I have problems with high resting heart rate and blood pressure, worsening dizziness/vertigo, heat intolerance, and gastroparesis/poor gut motility. I was on prednisone for 10 months last year and my heart rate and blood pressure have come down a lot since weaning off the steroid and I was even able to discontinue the heart/bp medication. I still have spells when it will spike, but it's not constant.

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I have autonomic problems low blood pressure, tachyardia, breathing problems, gastroparesis, motility issues, heat intolerance. I am on florineff and awaiting peg j tube, they are debating starting ivig. will no at the end of the month when I see neuromuscular doctor.

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My autonomic problems are horrible to live with. Heart and blood pressure have a mind of their own. Living like this is pure hell. Yes, also have low motility. I take a probiotic and have to use Miralax often. I am so glad I found this support system as I thought I was so weird. Sound so much like kim5204. God bless all of you.

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Well, I think you kind of already know my story, but I am currently 'sort-of' diagnosed with POTS after my week at Mayo. I say 'sort of' because I only had the priliminary testing done and it was *off*. I mostly have issues with my blood pressure being way too low (like 70/35 laying down) and my heart racing when standing- I have alot of dizziness and blacking out too. I'm seeing a neurologist when I go to Mayo in a couple weeks to get more info.

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I have been diagnosed with orthostatic hypotension when i was in the ER but they haven't done anything for it and all the other doctors haven't really said much about it except a doctor I don't go to anymore.

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I also have dysautonomia which has caused low blood pressure, POTS and decreased sweating. Dysatonomia is what is most likely causing my gastroparesis and constipation.

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Hi Jolicary

Yes my first symptoms of dysautonomia were GI . I had cancer work up, GI workup every routine test. Then one trip to the ER my husband mentioned to Doc that I don't sweat, can't tolerate the heat.and wondered if there was any connection. Me as the nurse is thinking, oh don't embarrass me by asking such a stupid question. Sure enough heat intolerance and inability to sweat is a classic symptom of autonomic problem.
He sent me to a very smart neurologist who suspected Dysautonomia,who then sent me to a neurologist specializing in Dysautonomia

Almost 20 yrs later still seeing him. GI improved but have other neuro symptoms which have varied over the years.

I can't stress enough how important it is to see a neurologist who knows Dysautonomia


I can't stress enough how important it is to see someone who knows Dysutonomia.

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Thanks, everyone I also have low BP, Tachcardia, gastroparesis, heat intolerance, and trouble breathing. Right now my Gastorparesis is so bad I can't stomach a thing. Reeree yes living like this is pure hell you are so right! Runningonempty1 I seen your going back can't wait to hear! I am going August 19th I can't wait my hopes are high. Serittta, glad your husband asked sounds like your in the right hands thank God. AllISON989, They do ignore I hope this isn't the start for you. This is what I started with, and now I am horribly sick. Don't you love how they like to ignore low blood pressure, and freak out if anyone has high ugh!! Snowbear, thank goodness for you I hope it stops forever. Kim5204 I sound just like you I hope you can get some relief for this really sucks!!! Kitycat4, I hope you reach out for a neurologist who deals with dysautonomia don't let it get worse! I have no choice but to go to Mayo I have noone around me who deals with this horrible autonomic dysfunction. Take care all, Cari :)

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Hi. I have mitochondrial disease, which affects many organs/body systems. Because of Mito, I have dysautonomia (among a zillion other things!); I also have gastroparesis, dysmotility and other GI issues. I do believe that the dysautonomia is responsible at least in part for some of my GI stuff, gastroparesis especially.

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I have had horrible dizziness and heat intolerance for the last few years. I have been sent to every kind of specialist and they all say they can't explain it. I read on here someone had POTS and I looked it up out of curiosity. When I read the symptoms I started crying and I emailed the link to my husband who was working and he was shocked. I don't know about my heart rate- I don't have anything to check it with but I fit all the other symptoms. My family doctor had never heard of it but has referred me to the only specialist in Ontario and I am waiting for an appointment now.

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Auntwinnie,
Most blood pressure machines will also check your heart rate. Good luck with a diagnosis. I'm not sure if I have POTS, but seems like I have a lot of the symptoms so I'm doing a lot of reading about if. Let us know how your appointment goes.

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I have P.o.t.s, gastroparesis, colonic inertia. I have low blood pressure, and extreme dizziness. I cant tolerate too much heat. have a nj tube and awaiting for another op.
I hope you can get sorted.
Take care

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Auntwinnie

Pl make sure specialist is knowledgable about Dysautonomia.
Sure sounds
to me that is what you have

Best to you
Chris

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Yes. I have labile blood pressure in addition to having been diagnosed with gastroparesis and achalasia. My heart rate is all over the map as well, and doesn't necessarily adjust to compensate for dehydration or low blood pressure. My regulation of body temp is whacky, too. Sometimes they use multiple thermometers because it's unbelievably low and so they think their equipment is malfunctioning when, instead, it's my equipment that's the problem. I hadn't thought of my balance deficit being an aspect of dysautonomia. No one has called it dysautonomia, per se, though I haven't asked. A basilar skull fracture seems to have damaged some of the self-regulation features this body used to have. But I've made it this far -- in my case these things represent a small price to pay for still being alive and able to function.
Cheers

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I have autonomic problems POTS, tachyardia, breathing problems, hypo-motility issues, heat intolerance, neuromuscular weakness of the lungs, neurogenic bladder.

I have a idiopathic edema problem that no one can figure out so I can not consume the usual POTS meds to bring up my BP.

Due to the severe problem I have with my intestines I am going to have an ileostomy done on July 10th. No medicine has worked to aide in going.

As for my bladder I did have a stimulator in for 7 years there my nerves stopped excepting the stimuli so it had to be taken out - now to go pee I have to rely on Bumex 1mg twice a day. Having an autonomic dysfunction is no fun but life has to go on. Debbie

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A surgeon and GI doctor asked if I had ever been diagnosed with Scleroderma, but I am awaiting an official diagnosis. Prior to that, I had never heard of it, but it certainly fits. We just moved to the Charlotte area where there are specialist that are familiar with Scleroderma. I have dis motility in my esophagus, an uncoordinated swallow, incomplete closure of my larygnx, the lower two-thirds of my esophagus muscles barely function, causing my food to go only half-way down and bounce up, to be aspirated, along with most of the other symptoms that come with Scleroderma CREST. I have been taking blood pressure lowering medication, which is helping the muscles work better, so that I do not cough all the time and feel like I am choking and constantly swallowing with all my might just to allow saliva. I am having much less heartburn too since I went on the medication. The GI doctor suggested that I have a test that measures the various acid levels in my esophagus, to see an ENT, a rheumatologist, Pulmonologist who is familiar with Scleroderma CREST and a speech therapist to teach me how to swallow differently. I am interested to see how that works and what the game plan is from the other specialists.

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has anyone ever taken Liprinisol for high blood pressure? I have severe PN and this med makes the PN a lot worse and I cannot regulate my body temperature and heat makes the burning a lot worse and when I am burning I get chilled very easy. My cranial nerves and my face hurt and burn/tingle and I am exhausted. I can hardly wear shoes and socks because my feet are in such incredible pain. Anyone heard of a BP med that does not affect people like us and make the PN and BP increase? I cannot take the burning/tingling and joint pain anymore, there has to be an alternative therapy? any help would be great. take care everyone! What is POTS?

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Hi screamingribs, POTS is Postural orthostatic tachycardia syndrome here's a link to explanation http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome

Could tell me what PN is?

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I have Pure Autonomic Nerve Failure Addisons Disease and Severe Gastroparesis. I have to do daily self cathes in order to pee. Im completely dependent on tube feeds and I have a Gtube that has to be hooked up 24 hours a day. I had my gastric pacemaker removed on june 30th becausey stomach wasnt responding to it at all. I have orthostatic hpertension. So my blood pressure drops upon standing best of luck to u. U r in my prayers.

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