Dysautonomia WITHOUT POTS

[Gail R]

There are too many threads to search through--we're all exhausted, remember?--so I'm starting what I hope isn't actually a new one, necessarily. Here's my question for all you DINET folks out there:

How many of us are there who passed the tilt table test and don't have POTS? To those who suffer with it, I'm so, so sorry you have to live with such a terrible condition, but I'm actually really tired of feeling like everything in the dysautonomia world revolves around POTS. I'm on a Facebook group in my state and all they talk about is POTS. I hold down a full time job and have a pretty normal life considering all my symptoms. A lot of the time I feel really badly about resenting the focus on a single symptom of my disease, but there doesn't seem to be anyone who can relate to my nearly invisible medical life. I feel miserable about 90% of the time. Just because I can walk around and don't have to worry about fainting when I sit or stand up doesn't mean my experiences with dysautonomia aren't valid.

I have dysautonomia with IBS symptoms; temperature dysregulation/difficulties with changing weather and/or seasons; hypersomnia (may be primary or may be due to the dysautonomia - which came first, the chicken or the egg, in other words); muscle twitches, spasms and cramps (how many of you have had some very small muscle twitch for DAYS - my worst was the distal end of a small muscle around my eye that twitched for 28 days without stopping and my latest was several days of the muscle along my top lip that people could actually see at times); small fiber polyneuropathy; chronic, unexplained pain...Sheesh! That's enough, don't you think? I know having POTS sucks, and I'm sorry for those who have it. I truly am. I know of many people who can't even sit upright, and I have the utmost compassion for those who have to live with it day in and day out. But what about those of us who don't have it?

People see us going about our daily lives and and don't believe us because we have jobs and can do most normal things on most days. We must be making it up. We're total hypochondriacs. Or maybe we do have something minor wrong with us and we're playing it up to get attention and sympathy. And when I try to go to a group online for support and to commiserate a bit, all I see is POTS everywhere. The worst is when people on my Facebook group take my questions or comments about not having POTS and turn them into POTS discussions. Come on, people! I can't be the only person on this Earth with dysautonomia without POTS. Would someone please help me out and share your non-POTS stories and struggles and help me when i share mine?

[RecipeForDisaster]

I feel your frustration, although i find help in a lot of the POTS discussions even if i don't have it. Your message resonates with me very much. I know I don't have POTS and I have a lot wrong with me but no diagnosis at all. I'm still working 3 days per week and pushing through the best I can. I'm grateful I have finally obtained treatment but it would be nice to have a name. I think having dysautonomia without POTS is so hard to diagnose, because as misunderstood/unfamiliar as POTS is, something more vague without clear diagnostics is much more likely to be missed/dismissed. i have only told very few friends about any of it, mostly those who have been with me when i passed out. It sounds too weird, fake, or minor. I might tell someone i have problems with my BP if i have to but that's all. mostly, I just fake being well.

 

i feel awful most of the time and have had long stretches of not being able to sleep, eat, or walk without being dangerously wobbly. My heart rate is inappropriately fast and pounding (but not IST, apparently), but i haven't passed out since being on all my meds, thankfully. My BP is perpetually way too low. I have the temperature regulation issue big time, don't really sweat, my appetite is not normal (sometimes overboard, but usually I need to be tempted to get hungry), I have the muscle twitching, and lots more.

 

Have you gotten a diagnosis? If you'd like to chat privately, please do so, I'd love another "pen pal". 

[Pistol]

Hi - I totally get your point. I do have POTS and suffer from syncope as well as seizures directly related to POTS. However - these are just ONE of the symptoms of dysautonomia and they are due to the orthostatic intolerance. This symptom is more severe in people with POTS than other dysautonomias. In addition to this I also have IBS, temperature dysregulation, IC, CFS, GERD, chronic pain and ADD - all of these are from dysautonomia. Although the syncope and seizures are the most dramatic and recognizable symptoms does not mean that they are the most disabling, in fact on a day-to-day basis I think that I mind the fatigue the most. So - dysautonomia does not have to include POTS symptoms to be real and I hope you find help from that.   

[Peter Charlton]

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.   

 

[Always hoping]

I'm sorry you are dealing with these medical issues Gail.  While I have the diagnosis of POTS, I am "lucky" to be able to be on the moderate side of it (most days) and live life as you do.  Full time working single mom who has many of the same symptoms and struggles.  If we compared our issues, they would likely be very similar.  I wouldn't discount your struggles or symptoms just because you don't have the same diagnosis and I don't believe most others on this site would either.  I believe most people (POTS or not POTS) would help you with your questions and struggles since many of us are dealing with the same things.  This forum has tons of valuable information.  Take what information pertains to your symptoms and issues and help others with the same issues.  My experience is that there is a wide range of symptoms with people and many would understand your struggles regardless of their official diagnosis.  Be well.

[Steven]

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.

[yogini]

There are many people on this forum that have NCS/OH - the form of dysautonomia where the BP drops.  Sometimes people just call everything POTS because that is a lot easier to type and pronounce than dysautonomia. 

Most of the advice not his forum, works for both POTS and NCS/OH.  As someone else mentioned the symptoms and treatments are largely the same.  I don't think you even need to say "I dont' have POTS" when asking questions in a discussion group.  That probably just confuses people who aren't familiar with the technicalities.

[Katherine]

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.

 

[Katherine]

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!

  

[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.

 

[Peter Charlton]

2 hours ago, Katherine said:

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.

 

Hi Katherine. Still not even been given an appointment. I presumed the burning feet were because of my standing up all day job, but now I do not work and find even spending two days in bed, the feet are still on fire so presume it must be the nerves.

I am awake at this late hour because this evening I have been sickeningly unwell, but without being able to say what it is. My heart palpitations were no worst than usual, it was like an "I should be in hospital" level of feeling ill, is passing now though so will be able to sleep soon.

[green]

Hi,

I am sympathetic to your view that the POTS focus is a problem. When I was first having trouble with orthostatic intolerance, I was desperate for help. I sought help from doctors by trying to ensure I got labeled 'POTS' by failing a TT-test. I felt a lot of anxiety about how at one point I 'passed' and thus did not have POTS. 

I've done the TT three times, and had 1 result that indicated POTS and two that didn't. Eventually, I was able to reconcile myself to the reality that I have orthostatic intolerance, and, fatigue that worsens with changes in the weather, with heat, that makes it hard to stand still for long periods of time, without feeling that I needed to label it POTS. 

But, I used to be really intense about it, because I thought POTS medications would help me. Nothing ever really helped though, and I guess now that I'm reconciled to the idea that medications are not the answer, I feel less distressed about the need to ensure my condition is labeled POTS.

I do wish that they had found the underlying cause of my condition and helped me to treat it, but my sense is that the science isn't really at the point where they can definitively label what's wrong with me. 

[RecipeForDisaster]

This resonates with me. What DOES help you? Do you feel your complaints are taken as valid by clinicians, without a diagnosis? My TTTs came up inconclusive as well, and meds aren't super helpful. They are better than nothing, but IV fluids are the thing that helps most. 

[yogini]

If you do not have POTS but your blood pressure drops on the TTT , there is a formal diagnosis - Neurally Mediated Hypotension, or Orthostatic Hypotension.  Most of the treatments are the same as for POTS and doctors that know about POTS should take it seriously and know how to treat it.

[RecipeForDisaster]

For me, I don't know if my BP dropped enough. I just got labeled dysautonomia. 

 

My BP is low all the time, it does vary with activity and position (and does not increase when I stand as it should) but I don't even have a good BP lying down. It's too low to allow me to stand and walk without blacking out, so I am orthostatic but I believe it's mostly because I am just too hypotensive to do those things. That's why I wonder what is really wrong with me. 

[yogini]

2 hours ago, RecipeForDisaster said:

For me, I don't know if my BP dropped enough. I just got labeled dysautonomia. 

 

My BP is low all the time, it does vary with activity and position (and does not increase when I stand as it should) but I don't even have a good BP lying down. It's too low to allow me to stand and walk without blacking out, so I am orthostatic but I believe it's mostly because I am just too hypotensive to do those things. That's why I wonder what is really wrong with me. 

Have you had your blood volume checked?

[RecipeForDisaster]

I'm really sure it's low, partly because of my response to IV fluids. I haven't had it checked... I am going to ask but I bet no doctor wants to order the testing. It's a few hours away at Yale.

 

I tell doctors that the best way to describe my overall feeling is that all of my blood is the floor and I've had too much caffeine (heart pounding wise). 

[angelloz]

At the Mayo Clinic I was told I have autonomic neuropathy and mild autonomic failure, not POTS. I think as someone mentioned many do not have the POTS label but do have other autonomic issues. I too have very low BP and and low blood volume. Had to get a hemodynamics test for that to be found. Oddly with low blood volume I have nervousness and insomnia. That doesn't make sense to me. In any case...you are not alone!

[GardenGal]

Hi Gail, 

I'm curious about the muscle twitching, spasms and cramping you described. I feel like a lot of my other dysautonomia symptoms are more 'understood' (GI stuff etc...) but have a lot of muscle related issues that my dysautonomia specialist things are outside the general dysautonomia umbrella. To me, these symptoms are very scary. Usually right sided contractures, weakness in my L face and then on and off muscle twitching. I don't think the twitching is as bad as you have described, but still frustrating and sometimes painful. My internist things it may be a problem with calcium pump in my muscles... Anyway, can you tell me more about what you experienced, why YOU think it happens, what helps/ makes it worse, etc. 

I'm generally frightened by the loss of muscle control, contracting and twitching and wish I had some way to understand it. Any thoughts you have would be helpful. 

[Steven]

2 hours ago, GardenGal said:

I'm curious about the muscle twitching, spasms and cramping you described. I feel like a lot of my other dysautonomia symptoms are more 'understood' (GI stuff etc...) but have a lot of muscle related issues that my dysautonomia specialist things are outside the general dysautonomia umbrella. To me, these symptoms are very scary. Usually right sided contractures, weakness in my L face and then on and off muscle twitching. I don't think the twitching is as bad as you have described, but still frustrating and sometimes painful. My internist things it may be a problem with calcium pump in my muscles... Anyway, can you tell me more about what you experienced, why YOU think it happens, what helps/ makes it worse, etc. 

I'm generally frightened by the loss of muscle control, contracting and twitching and wish I had some way to understand it. Any thoughts you have would be helpful. 

The onset of my muscle-related symptoms coincided with my Dysautonomia symptoms becoming a problem. My muscle-related symptoms range from occasional small twitches that don't really cause any problem, to persistent eye tremours that could be contributing to double vision and visual-processing issues, to muscle pains of varying degrees that come and go, to more severe muscle pain and contractions in the face, neck and chest which have resulted in a couple of visits to the Emergency Department over the past few years.

Here is a link to info giving an overview of various causes of muscle twitching, with links to articles on specific causes: https://www.healthline.com/symptom/muscle-twitch#modal-close

Number two on the list in the link above is Peripheral Neuropathy, which is an issue for many people with Dysautonomia: https://www.healthline.com/health/peripheral-neuropathy

I think Peripheral Neuropathy is likely in my case, so I am in the process of arranging testing (and because of how things are in Australia for these kinds of things I don't know when that will happen).

Muscle issues can also be caused or made worse by some medications that can get prescribed to people with Dysautonomia. I trialled fluoxetine (Prozac) a few years ago for migraine (or Dysautonomia diagnosed as migraine) and the side effects included a significant amount of visible twitching, mainly of fingers and toes, but also in other places around the body, as well as buzzing sensations, barely visible tremours and other things. I get these kinds of symptoms without medication, but there was a major increase during the time I was trialling fluoxetine, with frequent symptoms in areas of the body where I wouldn't usually have frequent symptoms of that kind. I've read that fluoxetine is a calcium channel blocker, which ties in with what you wrote about a possible 'calcium pump' issue with your muscles.

I hope that gives you something helpful to work with.

[GardenGal]

On 3/11/2018 at 12:11 AM, Steven said:

The onset of my muscle-related symptoms coincided with my Dysautonomia symptoms becoming a problem. My muscle-related symptoms range from occasional small twitches that don't really cause any problem, to persistent eye tremours that could be contributing to double vision and visual-processing issues, to muscle pains of varying degrees that come and go, to more severe muscle pain and contractions in the face, neck and chest which have resulted in a couple of visits to the Emergency Department over the past few years.

Here is a link to info giving an overview of various causes of muscle twitching, with links to articles on specific causes: https://www.healthline.com/symptom/muscle-twitch#modal-close

Number two on the list in the link above is Peripheral Neuropathy, which is an issue for many people with Dysautonomia: https://www.healthline.com/health/peripheral-neuropathy

I think Peripheral Neuropathy is likely in my case, so I am in the process of arranging testing (and because of how things are in Australia for these kinds of things I don't know when that will happen).

Muscle issues can also be caused or made worse by some medications that can get prescribed to people with Dysautonomia. I trialled fluoxetine (Prozac) a few years ago for migraine (or Dysautonomia diagnosed as migraine) and the side effects included a significant amount of visible twitching, mainly of fingers and toes, but also in other places around the body, as well as buzzing sensations, barely visible tremours and other things. I get these kinds of symptoms without medication, but there was a major increase during the time I was trialling fluoxetine, with frequent symptoms in areas of the body where I wouldn't usually have frequent symptoms of that kind. I've read that fluoxetine is a calcium channel blocker, which ties in with what you wrote about a possible 'calcium pump' issue with your muscles.

I hope that gives you something helpful to work with.

Hi Steven. Thanks for your response. A lot of that sounds familiar. Definitely the dysautonomia and the muscular symptoms coincide for me as well. You sound pretty certain that in your case the underlying neurological component is causing the muscular symptoms (primary dysautonomia)?? I've generally assumed the same about myself as well, but have also wondered if the underlying muscular issues are primary for me and the dysautonomia is secondary, for example, the smooth muscle malfunction in GI tract and vasculature causing hypotension and gastric slowing etc.  Do you have problems with sustained muscle contracting (not like a cramp, more like a contracture?) Part of what has been strange for me is my symptoms are often unilateral: loss of muscle control and muscle contraction on my right side.  Have you experienced this one-sided kind of thing? 

[yogini]

On 3/8/2018 at 7:55 AM, RecipeForDisaster said:

I'm really sure it's low, partly because of my response to IV fluids. I haven't had it checked... I am going to ask but I bet no doctor wants to order the testing. It's a few hours away at Yale.

 

I tell doctors that the best way to describe my overall feeling is that all of my blood is the floor and I've had too much caffeine (heart pounding wise). 

I have normal blood volume but when I was very sick I got IV fluids and responded well.  Many patients with dysautonomia benefit from expanded blood volume even if our blood volume is normal - because our blood vessels don't constrict properly to deliver blood to the brain.  

But if you can't explain your symptoms and they don't seem like typical dysautonomia it is worth checking blood volume because that is actually a different medical condition that dysautomia and there might be other treatments or causes.

[Steven]

9 hours ago, GardenGal said:

You sound pretty certain that in your case the underlying neurological component is causing the muscular symptoms (primary dysautonomia)?? I've generally assumed the same about myself as well, but have also wondered if the underlying muscular issues are primary for me and the dysautonomia is secondary, for example, the smooth muscle malfunction in GI tract and vasculature causing hypotension and gastric slowing etc.

Hi @GardenGal. I think it's highly likely that testing will show some neuropathy for me (I also get tingling, numbness, hot and cold skin sensations, sharp pains that come and go sometimes etc.), but the extent to which that plays a role in my muscle-related symptoms is more complicated. My dysautonomia could be described as presumed primary dysautonomia at this point. Scans and pathology tests have supposedly ruled out a range of other possible primary conditions. I do have some skin symptoms, and a skin biopsy report indicating mild inflammation, that are possibly indicative of an autoimmune component, but nothing autoimmune has been identified from the pathology tests so far, and, if it is the case, it could be secondary to the dysautonomia rather than the other way around, especially since the skin symptoms became apparent later than other symptoms.

9 hours ago, GardenGal said:

Do you have problems with sustained muscle contracting (not like a cramp, more like a contracture?) Part of what has been strange for me is my symptoms are often unilateral: loss of muscle control and muscle contraction on my right side.  Have you experienced this one-sided kind of thing? 

I've had episodes of sustained muscle contraction. They aren't a frequent symptom for me, but if I pushed myself physically they might become more frequent. I've been to the Emergency Department five times in just over four years, with the first two times for unilateral muscle pain and contraction lasting several hours. These episodes involved the face, scalp, neck, top of the shoulder and upper chest, all only on the left side, like a line down the middle of my face formed a sharp boundary between severe symptoms on the left side and none on the right. Sustained muscle contraction hasn't been so much of a severe problem since those early episodes about four years ago. At that time I had a blood test that indicated low vitamin D, which could potentially have contributed to the severity of those episodes. The severe early episodes were also at the beginning of my dysautonomia symptoms becoming apparent to the point of being a problem, so, when I moved house at that time, I did more physically than someone with dysautonomia probably should.

These first two episodes were diagnosed as migraine, and I have had an ongoing issue with migraine that started at that time. I've heard of people having some strange unilateral symptoms with hemiplegic migraine, including temporary unilateral muscle weakness or even temporary unilateral paralysis.

I had a lot of unilateral stuff in the first 6-12 months of onset, but my symptoms became more and more bilateral and have typically been bilateral over the past three years or more.

[RecipeForDisaster]

Yes, I'd be very curious about my blood volume. Hopefully I can get the testing done. 

 

I do have some clear dysautnomia symptoms but not a particular pattern for diagnosis. I have awful temperature regulation and sweating, for instance. Maybe that's just from being in shock? Hypovolemic shock would explain a lot, really.

[GardenGal]

On 3/14/2018 at 6:32 AM, Steven said:

Hi @GardenGal. I think it's highly likely that testing will show some neuropathy for me (I also get tingling, numbness, hot and cold skin sensations, sharp pains that come and go sometimes etc.), but the extent to which that plays a role in my muscle-related symptoms is more complicated. My dysautonomia could be described as presumed primary dysautonomia at this point. Scans and pathology tests have supposedly ruled out a range of other possible primary conditions. I do have some skin symptoms, and a skin biopsy report indicating mild inflammation, that are possibly indicative of an autoimmune component, but nothing autoimmune has been identified from the pathology tests so far, and, if it is the case, it could be secondary to the dysautonomia rather than the other way around, especially since the skin symptoms became apparent later than other symptoms.

I've had episodes of sustained muscle contraction. They aren't a frequent symptom for me, but if I pushed myself physically they might become more frequent. I've been to the Emergency Department five times in just over four years, with the first two times for unilateral muscle pain and contraction lasting several hours. These episodes involved the face, scalp, neck, top of the shoulder and upper chest, all only on the left side, like a line down the middle of my face formed a sharp boundary between severe symptoms on the left side and none on the right. Sustained muscle contraction hasn't been so much of a severe problem since those early episodes about four years ago. At that time I had a blood test that indicated low vitamin D, which could potentially have contributed to the severity of those episodes. The severe early episodes were also at the beginning of my dysautonomia symptoms becoming apparent to the point of being a problem, so, when I moved house at that time, I did more physically than someone with dysautonomia probably should.

These first two episodes were diagnosed as migraine, and I have had an ongoing issue with migraine that started at that time. I've heard of people having some strange unilateral symptoms with hemiplegic migraine, including temporary unilateral muscle weakness or even temporary unilateral paralysis.

I had a lot of unilateral stuff in the first 6-12 months of onset, but my symptoms became more and more bilateral and have typically been bilateral over the past three years or more.

Hi Steven. Well your unilateral symptoms sound quite familiar both in presentation in progression. When my dysautonomia started I also had a couple ER visits (with admission in one of them), diagnosed as "TIA" (mini-stroke).... however TIA symptoms by definition resolve within an hour, and I had residual right sided weakness (right hand, foot/leg), for about 8 months after. Now, the same contracting/weak/muscular-neuro stuff that used to happen unilaterally does happen sometimes on both sides more diffusely, so in that way, much the same as yours. The best way I can describe it is as "posturing." Like decorticate posturing, however unilateral posturing is theoretically seen in seizure activity (and not much else)..... Yes, have thought about the migraine component as well. Perhaps vascular spasm (precipitated by an autoimmune component???) could play a role in some of this, but I think this goes beyond typical atypical migraine presentation???

You talk about the muscle pain in arms, chest shoulder.... that I have bilaterally and is associated by loss of voluntary muscle control. So scary, especially when it spreads to chest (usually starts in my forearms then spreads to neck/throat and then chest). Have you had this? It started during a mestanont trial, and I've noticed, as you described, that it happens after I've overused my muscles. I can relate, we just moved as well, and has been flaring up :-)...Another time when my husband had a dirt biking accident and I was helping with his PT... etc. Anyway, have wondered if there is neurotransmitter component. It's like something 'runs out' or is 'used up.'

FYI, this probably sounds really strange, but I've had a HUGE improvement in muscular symptoms since cutting out eggs. As they are the immune component of the egg(full of lysosomes) and function to prevent the yolk from infection, it makes sense. I've read that these lysosomes can sip right through enterocyte linen in the gut into the bloodstream quite easily. So, at the risk of sounding like a natural health quack :-)... I'll just throw that in there. Has been such a HUGE improvement since eliminating eggs. What do you find helps?