Katherine

Gail, I have orthostatic intolerance.  it's beyond miserable.  I don't have POTS either, but have found a lot of help support wise from the POTS community.  I know people with POTS who are able to do a lot more than I can.  I think in all conditions of dysautonomia, there are symptoms that range in severity.  What have you done for relief?  My neurologist who diagnosed me with orthostatic intolerance (after the tilt table and other autonomic testing) gave me a list of things to follow.  It took months to notice a marked improvement, but it really did help.  A year ago I was practically bed ridden.  Now, I am mostly housebound, but can be up for 3/4 of the day.  Huge difference.  I'm happy to share if needed.

On 2/27/2018 at 11:12 AM, Steven said:

I also get a lot of the types of symptoms you mentioned, as well as some others, including temperature dysregulation, fatigue, disrupted sleep cycle (insomnia and hypersomnia), muscle twitching, muscle aches and pains (sometimes pain similar to a pulled muscle in the back or shoulder for weeks, but which can ease up for brief periods within those weeks and is not tender to touch so is not a pulled muscle), abdominal pains, sharp stabbing pains that come and go around the body, hot and cold sensations, electric shock sensations, bloating and gastrointestinal issues at times, migraines, shortness of breath, eye tremours and double vision in each eye (continually for three and a half years), visual processing issues, pattern aversion/pattern glare, numbness and tingling, skin issues (fragile capillaries, small bubbles that come and go under the skin that my doctor can't explain), orthostatic hypertenstion or hypotension under some circumstances, often have bradycardia (slow heart rate) at rest, cognitive issues (working memory, word recall, sustaining complex thought), excessive sweating, loss of proprioception (sense of body position) and sense of touch at times where I can't tell if I am standing up or lying down or which way is up or down, shakiness, nausea, breathing issues at times, and more.

These things have been going on for four years. I did discover in the past few months that, based on my own measurements at home, I do also meet the diagnostic criteria for POTS. That now gives me something measurable that I can use to demonstrate that something physiological is going on, beyond me just saying that something is going on and describing symptoms. Although that didn't help on the weekend when someone called an ambulance for me and the Emergency Department staff hadn't heard of any term I mentioned to them and didn't look any of them up.

I am in the process of arranging autonomic testing, which I think will probably detect some degree of autonomic neuropathy.

Steven, your condition sounds unbearable.  I hope you've gotten a diagnosis.  I have a friend who has been diagnosed with POTS and MSA.  He also gets the "bubbles under his skin" from his fragile capilaries that his doctors can't explain.  Although his bubbles are about the size of a large beetle.  He gets it when he's stressed in any way.  Have you found any answers in regards to this?  You're not the only one who's suffering with all these symptoms!

On 2/25/2018 at 3:47 PM, Peter Charlton said:

I don't have POTs, but am too ill with the other symptoms to hold onto my job. I only feel OK when lying in bed if you dont count the feeling I have of having been beaten on the soles of my feet and my tingling legs seem to be getting further up by the day.

I had my Autonomic Neurology assessment just a couple of weeks back. Told I have Autonomic Instability whatever that means.  An Autonomic Blood Pressure test saw my Diastolic go down by 13 points when I stood up for the three minutes, so presume that points to OH.

I am now awaiting appointments for numerous other tests including a tilt table test. My only worry is that as POTs is the most well known of the symptoms, I do hope they don't just look for that and not for the different but debilitating other symptoms I do have.   

 

Peter, any diagnosis yet?  I had the tilt table and other autonomic testing done and was diagnosed with orthostatic intolerance.  I have the same symptoms as you do.  Ever find out why your feet hurt so badly?  I can barely walk in the morning and when I've been sitting during the day.  Almost unbearable.