lewis

That's really weird. I hate the pvc!I get more on days that I excersize and feel at my best. Propranolol helped me some. I would like to know more to try to get them to stop.

I know all to well what your experiencing as far as wanting answers and wanting them now. I have had stage 4 Hodgkins disease with 3 months chemo and a month of radiation and fighting cancer seems like a cake walk compared to the way I have felt with autonomic problems. At least I had answers and a cure with cancer.lol. anyways have you been tested for pulmonary hypertension? I felt that same chest pressure right after I started on propranolol. Ya I didn't like it either and wasn't sure if it was the meds or dysautonomia that was causing it but luckily its better for the time being. I to feel like a time bomb. So if you had a chest ct or chest mri it would have showed the mals. My celiac artery was starting to aneurysm but they said it couldn't being causing me problems since the stomach is fed by 3 other arteries. However I think with my low blood pressure it did.

I had gastritis for 8 years before finding I had mals (median arcuate ligament syndrome). Had surgery and no more gastritis. You had any scans that might show an aneurysm of the celiac artery? Also I read sex sets off a dopamine response and I kinda remember there being some disease where having a dopamine response triggers something. Not real sure but trying to get you some stuff to search for..

Keep that accepting no for an answer attitude. I've come along way with this and haven't found complete happiness yet but am so much better off knowing what works for me and what doesn't. I'm still searching but get more good days than bad.

I'm to a point where the medical industry can't help me since nothing can be found. On paper I'm perfectly normal. So that's frustrating. I hope you can get some answers..

told me it was anxiety and to see a psychotherapist..

Been there and heard that lol. If I went to a doctor and they mentioned anxiety and had it stuck in there head that it couldn't be anything else I'd get up and leave cause they simply couldn't help me.

I remember feeling much like you feel. I was bound and determined to get fit the button of it and felt the doctor's recommendations of increasing fluids etc. Was just too get me out of the office. However after having gone through every single test out there and everything still coming Back normal I am left with changing my lifestyle to fit around what my body can do. It's taken a huge adjustment and took a couple years to figure out what works, what helps and what not to eat. My quality of life is better than when it started but no where near what or was before out all started. Staying hydrated, eccersizing specifically weight lifting and staying away from gluten are the main things that help me. I recommend finding a good neurologist that knows dysautonomia (if not at least a cardiologist), otherwise you'll go to your doctor appt. Knowing more than your doctor and get no where. It's really frustrating, the whole ordeal but at least we have this site that has loads of info.

I'm not sure but I think I am getting side effects from propranolol

It slows my heart rate fine. But I'm getting needle like stabs on my scalp. Plus itchy pain. Pain in my eyes.

Very dizzy.

Anyone else?

Sounds familiar. How long you been on it? I think I experiences all of those for awhile but don't get them anymore. Took a few months...

I started having nerve pain in my feet. I went to the doctor and he found I had a bruie in my right upper abdomen during his examination. I have had gastritis for 8 years and was on ppi for it. Within months I started going down hill fast with pots symptoms beginning to show up. I couldn't eat without having pain in my stomach and everything I ate bothered me and affected my pots. The ppi made my nerve pain worse and i was adversely affected by every medication I took. I lost alot of weight. My surgeon said it wouldn't help me but I begged him to do the surgery. After I did it he said he was skeptical that it did anything however I have no more gastritis and can eat everything except gluten and my dysautonomia is manageable, at least I have some good days on occasion where as before no day was a good day and I felt death was imminent.

I had this surgery done just over a year ago. Really helped alot of my problems but but not all. I got a big portion of my life back though. I haven't watched your link yet but will when I get time. Let me know if you have any questions about it.

I researched what stimulates the sympathetic nervous system as that seems to be my biggest problem. It said that sex was one way. It works well for me, it will take me out of tachycardia and bring me out of having a dry mouth. I need to find the permanent sympathetic stimulant though.

That's an excellent point about blood testing for Celiac's. It's highly inaccurate, so it isn't a good measure of whether you do or do not have it. Did you have blood tests, or a biopsy? If you have biopsies taken from your small intestine (for example, during a colonoscopy) and they're sent to a really good pathology lab, they are MUCH more accurate in diagnosing Celiac's. My one GI specialist actually worked with Celiac's research, so he skipped bloodwork all together and went straight to small intestine biopsies for me (which were, fortunately, negative). In my case, I was told a negative small intestine biopsy should be extremely accurate, as long as I was eating gluten regularly and having symptoms at the time it was taken. And, as I said above, you can have allergies/intolerances without having Celiac's, anyway.

I did have the biopsy done, also negative for celiacs. My gastro doc go eat as much gluten as you want it won't bother you. So I did and it still really bothered me. lol

I take it (tylenol 3) for shift work when I am trying to switch back to sleeping at nights the first night hoping it will knock me out. Sometimes it makes me tired and sometimes I feel nothing from it.

It have my heart symptoms worse and have me a tingly head. I was told by my pharmacist that it stays in your system for ten days so I had the side affects for ten days and worse heart issues since taking it.

Ya my joints crack more since I began having issues. I'd like to know what causes it to happen more.

Thanks for the information. I don't seem to have a problem with simple cards unless it has gluten (only tried flour gluten but might try other forms that have gluten in it) or any enriched product like cornmeal. I can eat an entire bag of Doritos with no problem but a hand full of cheetos(enriched)and I'm hating it. I haven't tried very many other things with gluten unless they lie on the label as I check everything. I have tried licorice and after my heart started racing I checked the label realizing it had flour in it. I had the IgE blood testing but no scratch test or ALCAT. When I first got sick I did have an entire simple carb issue but since starting the excersizing I have less of an issue with them. I will look into those other tests.

So I have been tested and was I told I don't have celiacs or gluten intolerance but definitely have an issue any time I eat gluten. Within twenty minutes I can barely stand due to orthostatic intolerance. I also know I have a problem with anything that has been enriched but have tried non enriched flour with the same result. I have searched and can't find why it makes everything worse?

I take 10mg morning and 10mg at night. I tried taking 10 mg at lunch but the dip in blood pressure was to much. Also it took a good 3 months to stabilize the side affects. The biggest being dizziness, tingly scalp and heaviness to breathe.

I was very apprehensive about getting one since the onset of my original symptoms happened after a flu shot(perhaps coincidental), however I've gotten two the last two years without any problems.

Lewis - in talking to my mom this evening, we were talking about this topic. She mentioned to the new pulmonologist that I have EDS and she didn't discount that being a factor in my mom's issues. But, it made me think, hiatal hernia is quite common in EDS patients as are dysautonomia symptoms. Have you been thoroughly evaluated for EDS?

I havent since I don't have some of the symptoms. My skin and joints are more on the too tight side of things rather than too loose. I will ask my doctor about it though. Thanks.

If marathons and toughness is your norm, you might feel like crap just being in normal health . Seriously though, people with high athleticism in their history before POTS onset can sometimes get POTS or POTS-like conditions from very short periods of bed rest resulting from simple illnesses, as short as two weeks. I've heard this from several of my healthcare providers. The key is to recondition but very slowly. It's frustrating because it doesn't feel possible to exercise at first.

Your GI problems sound like a place you might start, in terms of what you can do to feel better. You have a constricted esophagus, right? You can get that fixed. It's terrifying when things get stuck, and it's genuinely dangerous. My sister-in-law has this. Nexium helped her a lot, but she ultimately had to do the surgery to get it really fixed...after so many trips to the ER with stuck food. If it's just spasming, there's a medication for that. I took it years ago for some esophageal spasms I was having, and it worked instantly after months of cardiac pain from the spasms rubbing up there, and an incident asphyxiating water (I had avoided going to the Dr because they never seem to understand anything...but surprisingly, with no POTS experience, this GI doc knew just what to do)...if I find the name of the medication, I'll post it for you. Oh, and a barium swallow test won't show it. I think if you have this going on, you have to be REALLY careful when you swallow. You can't just casually gulp some water while standing...you have to sit down, be relaxed, not breathing heaving from exercise or something. But they should be able to help you with this...not POTS specialists per se but just a good gastroenterologist.

This spasming sounds just like what I am experiencing. I don't have problems with constriction, just might have had a spasm right when I tried to swallow and out got stuck? I can lay on my stomach at night and it sounds like my bed has springs being flicked but it's my spasms. It doesn't happen every spasm but my spasm alot of times will cause my heart to skip beats. If I could get this under control I could run again but running exacerbates the spasms. Any more info would be helpful. I have a good gastro doctor so I'd like to have more info to bring with me next time I see him. Was the med dialtazem? Thanks.

My autonomic test came up normal, even though my TTT clearly established my POTS diagnosis (on a good day, but we're all different and some people have borderline cases that are more difficult to diagnose). My TTT showed 75% blood flow deficit to my head when tilted up (10% is normal). My stress test felt good to me, but the technician ended it early because my blood pressure was rising dangerously high and she believed I was going to faint from my appearance. (I faint a lot.) I blackout when I stand up too quickly, and often faint several steps away from wherever I was sitting...neighbors know they can't expect an answer if they knock on my door when I happen to be sitting down or laying down...my family all jump out of their seats to catch me if I forget and get up too quickly. The blood pooling in my extremities is visible.

But my autonomic tests came back perfectly fine! It's really annoying because I had read and always assumed POTS meant dysautonomia. In my case, however, it might be because of Ehlers Danlos Syndrome, a genetic collagen error that makes my connective tissue too loose, including vascular walls.

My autonomic tests came up normal, as did my nerve conduction study, brain MRI, EEG and EMG...all neurological indications show normalcy, but I have lost some feeling in my hands/arms and feet, hearing, some degree of fine motor control in my hands, and overall balance...AND, I'm quite sure now that I've been having seizures for years, not just fainting episodes. So, this was unexpected for me, that it all looks normal in their tests and scans. The doctors told me to come back in a year or so in order to see if there is any change because they have to see two standard deviations from the norm in order to conclude that the test shows pathology, and maybe I just am not that bad yet. Not comforting.

They did find vitamin D and B12 deficiency...and I am actually regaining fine motor control and feeling in my hands since supplementing these vitamins.

We are puzzles. They can't figure it out. Just try to get at least a piece or two that can help you recover...it takes a long, long time to sort through it all. I've found that it's helpful to narrow complaints to a single question for a single doctor, get the answer, and move on. For example, I thought I might be having chiari malformation...went to a neurosurgeon experienced in POTS, EDS and chiari problems...from the MRI, she was able to rule this out, but told me that my discs are degenerating, hardening and drying out and growing bone spurs (osteophytes) into the spinal canal that are beginning to touch my spinal cord (and are inoperable). So, good to know. I had to have the two pieces of information that took me years previous to this visit to obtain for her to be able to properly assess me: POTS and EDS...so, it's just one step at a time.

I dunno if this response is helpful. Obviously, I can't tell you what you have. Hope you find your answers.

I read stories life yours and think that I shouldn't even be complaining. I just really want to get back to being the tough person I was before and be able to continue training for marathons but don't think that will ever happen.

Hi Lewis,

Have you had a GI doctor complete an endoscopy or a barium swallow?

Ya I've had 7 endoscopies, no barium swallow test. I have had lots of gastritis and eating pain which was fixed last year when they discovered my celiac artery stenosis die to median arcuate ligament syndrome, had surgery to cut the ligament and have no more gastritis.

What testing did you have, and what were the actual results? Where did you have the tests done? Maybe I missed that somewhere?

It's a long list but as far as autonomic testing, Qsart, ttt, nerve conduction, skin biopsy, breathing tests...

I don't know what test I've had that exists. Testing was done at the university of utah. I have the actual results but all were within "Normal" ranges. My pulse did raise on the ttt but bp stayed the same and after a few minutes my pulse dropped down. Was having a good day that day.

Interesting info. I have another friend that has a hiatal hernia and also has autonomic disregulation. Also when my esophagus isn't raw my autonomic problems are better or is it when my autonomic problems are better so is my esophagus. It's hard to know which is the chicken and which is the egg but I can have no nerve pain and as soon as I eat and the esophagus gets irritated the nerve pain shows up. It's doesn't matter though if the food is acidic or anything, any food or drink brings it on. Cold water makes me feel like I'm on a boat I guess from the esophagus spasms. I might find an ssri to calm the esophagus, I've heard about it used for that anyways.

I can handle anything natural pretty well. I did have a time where bananas would name my heart beat funny. I usually try to eat the same thing everyday so that I can narrow down what bothers me. It's very boring but I'd rather be bored than having crazy things going on.