Orthostatic Intolerance Not Main Symptom?

[Bridgerunner]

Does everyone here deal with POTS or orthostatic hypotension more than other symptoms?

I feel so weird. So weird. I have some tachycardia when I stand, but it's tolerable. My heart rate does get pretty high with exercise, probably more/faster than it should, but not alarmingly so. I don't know anything about my BP, other than when I've been sitting in dr offices, they always remarked on how perfect it is, until recently, when it's kind of unstable and all over the place, but never alarmingly high. But I don't have serious problems with dizziness/greying out/syncope. I used to. It got better.

But now I've developed serious GI hypomotility issues, crazy hyperhidrosis, and now seem to be getting issues with dry eyes. Along with a whopping case of neurogenic bladder. Sorry if that's TMI...I still am a little dizzy when I stand up, but it's no big deal.

I can't possibly be the only weirdo like this, can I? Without minimal standing-up issues, but just about everything else gone haywire?

[gjensen]

OI is not my most concerning symptom. Currently it is on the backburner.

[dizzyallie]

Hi Bridgerunner, yeah oi isn't my main prob either. Funny u mention hyperhidrosis, ive been bad too. Its sooo many symptoms at play in the body. Ready to hit something I swear!

[Bridgerunner]

I dunno, I can handle the sweating. I'm just scared that it will turn in not sweating at all. And that would be the end of running. And that would be horrible.

[Mermaid]

My heart rate rises 40-50 on standing but the tachycardia is also tolerable for me and on the back burner of my sympotms also. I'm also diagnosed with NMS but haven't fainted for eighteen months.

It's not tachycardia that prevents me from walking (even short distances) but rather red, hot, feet. I can't work out whether this is blood pooling or not. I also have temperature regulation and gastric issues that are now worse than the OI. For me, OI has improved.

So, you're not alone!

[TCP]

I have a mix of all the autonomic dysfunction issues. BP, HR, IBS, Syncope, Pain etc all seem to be the main problems plus many other problems such as chronic nausea. I guess all the nervous system, circulatory systems are all messed up and therefore nothing is working properly. I have issues with my bowel, bladder, liver, heart, lungs etc....

[Always hoping]

Your not alone! The 4 years that I was really ill I never even noticed that my HR was high. Perfect BP also. It wasn't until I found that POTS matched so many of my symptoms that I even checked my HR. Up 40 when standing and then I saw high numbers in the heat or with activity. For those years I really thought it was a GI issue since the majority of my symptoms during all my "episodes" seemed to focus on my stomach.

[Dyspatient]

I have orthostatic intolerance, and it can be a problem, but it's often very context dependent. More problematic in a related area is my just generally crappy blood pressure (very hypotensive) and as you said, other autonomic issues. My GI being the major one.

I used to pass out a lot when I was younger, but at least I could eat and digest most of the time. Since developing gastroparesis, I'd say my debilitation level has shot up, and that's on top of the OI/hypotension, NMS, POTS, and pain from ehlers-danlos. I also don't sweat enough in response to heat, but again, that is context dependent. If I can manage to stay cool, it's not a problem. The eating, not digesting, nausea, awfulness? That's just there, all the time, every day, and it limits my caloric intake. I'm on year two of this, which means two years of a very restricted daily diet to keep myself out of the ER, but the low calorie intake and even lower protein intake causes more fatigue (which worsens everything), and sometimes my GI symptoms are so bad that even my hydration status is difficult to maintain, which makes me clumsy and dizzy, more prone to hurt myself (EDS), more fatigued, more orthostatic....

It's a bad cycle and if I could just take the stomach/gut stuff out of it, my health would still be bad, but it would be a lot more manageable.

[jesse1919]

Dysautonomia isn't just POTS. There are many others issues and I'm sure many that don't even have a "syndrome" name yet unfortunately. I have POTS without GI or pain. It's mainly awful fatigue, exercise and othrostatic intolerance, and minor headaches. I saw you said you ran a 1/2 marathon in your other post. I wish I could still run. But I know that doesn't mean you're totally healthy.

[circuscat]

I am VERY new to this and not even sure I have a solid diagnosis of autonomic dysfunction yet. A neurologist I saw diagnosed it based on my history and one office visit, ran a zillion blood tests that were all negative and then told me there was nothing I could do but treat the symptoms. I asked him for a referral to Stanford and have seen a specialist in Autonomic Dysfunction who has ordered a TTT for me, but according to my visit summary there is no mention of autonomic dysfunction diagnosis.

I have had horrible tummy issues my entire life, been through the gamut of tests, etc., and finally in 2011 got a diagnosis of GI Dysmotility of the small bowel and colon inertia. The episodes I have are of EXTREME nausea (like, please kill me if this nausea doesn't go away soon), and vomiting that might last for a couple of hours to several days, followed by an hour or two of uncontrollable shaking.

I have been taken to the ER twice by ambulance for this (a two hour trip) because it's so bad, and have been seen more times than I can count in ERs and urgent care centers. If you have ever had the norovirus, that pretty much is what it is like for me. In fact, I had the norovirus two years ago and didn't realize it, just thought it was another episode, until my husband and his parents all came down with the same thing. I had CT scans, MRIs, xrays, small bowel follow through, ultrasound, blood work, etc. and all of it normal. Finally my GI doctor sent me to Stanford where I was given special testing that confirmed GI Dysmotility. Just like the neuro- they ordered a zillion bloodtests because they assumed that I had an auto-immune of some type- all came back normal.

I also get awful headaches that don't respond to migraine meds, am allergic to oral NSAIDs and codone/codeine drugs, and so all I could do is wrap my head in ice and try to get through the next 32 hours until it went away. Again- sent to Stanford Headache Clinic where i was diagnosed with trigeminal autonomic cephalgia.

I also suffer from extreme fatigue and have said it over and over to every doctor I've gone to but none will take it seriously. In addition- I can't tolerate heat because I don't sweat, and when I try to start any exercise program, I always end up sick.

If I get too tired, I will have a digestive episode of the awful nausea.

I also have orthostatic hypotension and have had it my whole life. I was sent home from school in 6th grade because I stood up from my desk, passed out and hit the floor.

I have a lot of orthostatic hyptension, but have learned to live with it. I try to get up slowly- if I forget and jump up, I head for something to hang onto and bend over until it passes. For me it is an inconvenience but the headaches, digestive issues, and extreme fatigue are what are ruining my life.

I have extremely flexible joints but no one has ever asked me about that. I can touch the BACK of my wrist with my thumb- although from what I have read is if you can touch the front of your wrist with your thumb that is hypermobile. I am going to ask the neurologist about Ehlers-Danlos when I see him in two weeks for the tilt table test.

One thing that has really helped me a lot with the digestive issues is taking domperidone- which is not legal in the US but your doctor can prescribe it for you under the compassionate use clause in the FDA. It is a pro-kinetic, like reglan but without the horrible side effects. It helps food move through your digestive system. I also eat very small, frequent meals. I find the longer I go between eating the harder it is to eat, so try to eat every two hours. If I go five or six hours without eating, when I do eat it will likely trigger an episode of misery. Also, if I feel an episode coming on, I IMMEDIATELY hit it with a cocktail of zofran and ativan, which is what is recommended on the Cyclic Vomiting Syndrome website. I also take magnesium oxide every night, which also helps keep things moving. Doing that has kept me out of the ER for several years, until this summer when for some reason I began having a lot of episodes of weakness, dizziness, headaches, and nausea. I think it's because I hit my head really hard in May and got whiplash, but all the doctors say no, that wouldn't cause symptoms to flare.

If you have digestive issues from this I would strongly encourage you to find a motility specialist who may be able to help you. Like Autonomic Dysfunction specialists- they can be hard to find. You have to go to a major clinic like Mayo, Cleveland, Stanford, etc. for the specialized testing.