New And Wondering If I Have Dysautonomia

[Nymph]

Hi everyone.

I'm new here. I'm 35, female, and a full time grad student.

About 5 years ago, I began experiencing distressing symptoms, one after the other: carpal tunnel, blurry vision, joint pains in knees and feet (later everywhere), dry eyes, dry nose/throat, anxiety attacks, spaciness, lightheadedness (or shall I say heavy-headedness? Sometimes I just want to put my head on the table).

Two years ago, after slews of tests, my rheumatologist seemed split between RA and Sjogren's Syndrome. I am being treated (same drug either way), but still no definitive Dx. My joint pain has significantly decreased on the medication.

I think that it's likely I have Sjogren's. Hoping to never have RA. However, some symptoms predate my Sjogren's symptoms, and some are not well explained by Sjogren's, unless perhaps I have autonomic involvement. Here they are:

• Hot flashes at night since I was a teen. (I'm 35 now.) I would get up and sponge myself down in the middle of the night to cool off.

• I've always gotten dizzy if I stand with my arms above my head, such as getting things off the top shelf, painting, writing on a tall white board (I'm 5'2"), etc.

• In my early twenties I developed severe gastric pain. Ten years later I deicovered that was due to a gluten intolerance. I still have some problems with reflux, however, and occasional diarrhea that I can't trace to gluten.

• Also in my early twenties, I began to get car sick when I drive distances. Anything over about 1 1/2 hours and I start to get sick. My stomach is like a rock and my head spins. My eyes also blur and go out of focus. Sometimes the eye thing has happened apart from carsickness.

• I have slightly hypermobile joints.

• Sometimes when I get up in the night I lose my balance. I've always caught myself but it's a bit concerning.

• BP usually runs about 90/60 or slightly lower when I feel bad, 110/70 when I feel more normal. I do not usually have orthostatic hypotension, although I have caught a drop a couple of times. My pulse does not rise 30 points lying to standing, but it does at times go over 120 bpm at the 5-10 minute mark. Since it is inconsistent, sometimes perfectly normal, I am trying to gather enough data.

• Several times after a night out, but no more than my usual 1 drink, I have had an incredible heartbeat like a drum that shakes my whole body, lying down, and keeps me awake.

• Sometimes my heart races and feel like a fluttering or strumming pressure in my chest, like a panic attack, but I am not thinking anxious thoughts. This does seem to coincide with my menstrual cycle. My lowest BPs are also during and after my period.

• If I get dehydrated, even a tiny bit, I feel like I'm going to collapse. You can find me squatting in line at the grocery store sometimes, pretending to examine the tabloid headlines.
• When I exercise lately I often feel like someone is pulling me down by the ankles into the ground. I've ruled out iron, folate, and B12 anemia.

​I would really appreciate your advice and input. I am so tired of doctors. The last thing I want is another specialist. But I also want to try my best to feel as good as possible so I can live my life. I will see my primary and my rheumamtologist over the next couple of months. I would really appreciate advice for those visits.

[Krissy21]

It definitely sounds like some kind of dysautonomia, but unfortunately we're not doctors and can't diagnose you. I know how you feel about doctors and seeing more specialists, but seeing one is probably a good idea for you. A cardiologist or neurologist that specializes in dysautonomia can run autonomic tests and try to figure out what's going on. They are also more familiar with medications and other things that can help you feel better. I'm not sure where you live, but I've had a lot of success with the Cleveland Clinic. I've also heard good things about Mayo clinic and Dr. Grubb in Toledo Ohio. Let me know if you have any other questions! I hope you can find some answers soon.

[Nymph]

Thanks, Krissy! I live in NC. I think that Vanderbilt is the closest place. I guess I will try to bring all this to my primary doc first.

[MomtoGiuliana]

Hi Nymph and welcome to the forum. There are many others on this forum who have been diagnosed both with autoimmune conditions AND dysautonomia. I am one of them (Hashimoto's, rosacea and POTS). There are theories that POTS could for some people be a manifestation of an autoimmune condition. Furthermore, often women (it's usually women) who have one autoimmune condition actually have more than one.

Fortunately dr's are becoming more aware of this condition and the treatments available. Because of your symptoms it would be worth asking your doctor about further investigation. You mentioned hypermobility. You may want to look into Ehlers Danlos Syndrome.

Hope you will feel better soon.

[lejones1]

Hey Nymph, welcome! I agree with with the above posts that it does sound like you could have a form of dysautonomia and should see a doctor about getting evaluated for it.

Where do you live in NC? (You can send me a private message if you'd like). I live in the Piedmont, and depending on where you are, I can recommend some doctors who could at least diagnose you and get the process started, even the testing wouldn't be as thorough as Vanderbilt. It takes months to get into Vanderbilt and you may be better off going there once you have an initial diagnosis.

[Nymph]

Thanks so much for the welcome, everyone!

I am more convinced today that I have some sort of dysautonomia. I wasn't feeling well today, just heavy, especially my legs. Since I had a three-hour night class tonight with an hour drive each way I decided to wear some compression hose. (I got them a couple of years ago for preventing DVT on long flights.) As soon as I put on the hose, I felt like a knew person. There was actually a spring in my step! I cannot believe that I am excited about compression hose. O, the irony!

Yes, MomtoGiuliana, over at the Sjogren's forum I frequent there's often talk of autonomic and other neuropathies. For myself, I wonder if mine is autoimmune or another cause, since it seems like it started a long time ago... just worse with the autoimmunity.

Thanks, lejones. I'm in the mountains. I'll send you a message, if I can figure that out.

[Nymph]

I saw my primary doc yesterday, brought him all my data and POTS info. He did an EKG and then said he wants me to be evaluated for POTS. He's sending me to a local cardiologist. That cardiology group has a tilt table and are generally well recommended, although I don't know much about this particular doc. He is old (60s).

So far the other recommendations (from POTS and Sjogren's patients) are a local neurologist, and several cardiologists in other parts of the state. It would be a big trip for me to go to them (I don't travel well), and I am now in the middle of a very busy semester of grad school.

So, should I see the unknown cardiologist (I already have an appointment), the recommended local neurologist (who may or may not be very knowledgable of POTS, the person didn't seem sure), or insist on traveling?

[Krissy21]

If it were me, I would start with the local cardiologist. See what he knows and if he can help you. You could at least do the tilt table test since they have one. If he can't help you then I would consider traveling to someone who specializes in POTS.

[Nymph]

Thanks! That's kinda what I was thinking.