Gail R

Mine are not this violent, usually, and when they are it's usually a one-time 'jump.' I do, however, have almost constant twitching, cramping, and/or spasms. For the last 10 days, my right eyebrow has twitched non-stop. This isn't nearly as bad as muscles jerking so hard you hurt yourself, but the constant twitching is exhausting. I take magnesium, CoQ-10 and ALA for migraine, which has also helped with some of the muscle stuff. I also vape CBD (no THC) which really seems to help with any inflammation going on in my body. I don't like vaping, but it's the only thing that works for me.

Talk to your primary dysautonomia physician about supplements that might help. What are your magnesium, sodium, and potassium levels? Sometimes eating a banana or other potassium-rich food just before bed can help. Maybe you've tried this, but maybe you haven't. I feel for you. The muscular involvement is something that I believe doesn't get enough attention and there doesn't seem to be much research going on in that area at all. We all know it's pretty hit-or-miss, and what works for 10 people might not work for 100 others, but if we all share things than help us we might all get there together in the end. My neurologist's spin is that if it works, do it as long as it isn't causing a problem somewhere else. Whatever you try, though, keep your neurologist in the loop. Having documentation in your chart is so very important when you have dysautonomia.

On 3/15/2018 at 3:05 PM, GardenGal said:

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? 

GG:

Did you cut out ALL eggs (including cooked in recipes)? I'd be interested in knowing more about that. 

I, too, feel sometimes like I've "used up" all my strength or muscle usage, even after sitting at my desk all day. There are times when I can barely take the cap off a gallon of milk that was already open, and then I end up spilling some milk when I pour it. 

I'm curious if either of you have Raynaud's Phenomenon.

On 3/16/2018 at 12:27 PM, Steven said:

Hi GardenGal. By "loss of voluntary muscle control", do you mean because of sustained muscle contraction; difficulty initiating muscle movement (without involuntary muscle contraction); involuntary muscle twitching, jerking, shaking or convulsions; difficulty co-ordinating muscle movements; or something different?

Although migraines could be a potential factor in unilateral episodes lasting a few hours or a few days, it would be a stretch to put unilateral muscle weakness lasting 8 months after an episode down to migraine. The third time I went to hospital, and the first time by ambulance, was described by a doctor or two as a possible TIA, but it also fit diagnostic criteria for an acute basilar-type migraine (which is increasingly now being called migraine with brainstem aura). I've seen someone on YouTube showing an episode of unilateral muscle contraction which she attributed to hyperadrenergic dysautonomia.

Have you looked into acetylcholine involvement? This could relate to factors such as how much is released into neuromuscular junctions, how quickly it is metabolised, and concentrations of acetylcholine receptors.

As a quick, rough guide to the effect of acetylcholine level on the functioning of skeletal muscle:
None = (temporary) paralysis
Too little = difficulty initiating movements, muscle weakness
Too much = involuntary contractions, twitching, jerking, shaking, convulsions

I presume by "mestanont" you mean Mestinon (aka pyridostigmine or pyridostigmine bromide). It inhibits metabolism of acetylcholine at neuromuscular junctions, meaning acetylcholine stays around for longer and increases muscle activation. I've read suggestions that it can dysregulate acetylcholine levels well beyond the lifetime of the doses taken, which fits what you described, but I don't have a good explanation for a biological mechanism for this.

My forearms have become an area where I get frequent, usually mild-moderate, muscle pain that comes and goes, but it's not associated with contraction or muscle control issues. The neck and chest are also areas of frequent muscle pain, which sometimes turns into a more sustained and severe episode. Sometimes the upper arms, left shoulder and/or left shoulder blade are also involved. I've had pain/discomfort in the throat area occasionally but it's not as common for me as the other areas just mentioned.

I don't get posturing of arms or legs, like in decorticate posturing, but I've noticed recently that when I'm not paying attention to my hands they will sometimes form into a shape like I'm holding a ball in each hand. The muscles aren't clenched tight. I've just found sometimes that they've gone into that position. Once I notice it I'm completely able to move my hands normally.

I haven't really found that increasing or reducing any foods have helped noticeably with muscular symptoms. I just aim to have a healthy and varied diet.

I took mestinon--my original neurologist thought I had myasthenia gravis--it's been so long ago I don't remember if I thought it helped. It must not have done much because he discontinued it after a couple of years.

On 3/14/2018 at 8:32 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.

I have unilateral stuff from time to time--mostly left-sided, and mostly related to numbness. The left side of my face sometimes gets numb when I'm experiencing migraine (like today, for example). I don't really lose muscle function or control, but I feel like people should notice that things are lopsided. They don't--I've asked multiple people if they can tell a difference and they can't. My left hand is twitchier than the right, and my massage therapist and chiropractor always have more trouble on the left than the right. I feel more pain on the right, but the real issues are almost always on the left side. Interesting that you also experienced unilateral symptoms, but that yours become more bilateral--mine are increasingly unilateral.

On 3/10/2018 at 11:33 PM, GardenGal said:

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. 

Hi, GG:

Honestly, the twitching and cramps and spasms are probably my biggest roadblocks. For a long time I was really worried about having something like MS but when I finally got up the courage to ask, I was told I'd been tested for pretty much everything (MS. Lupus, etc.) and all those tests were negative. It was a huge relief, but didn't get me any closer to the root of the problem. I take magnesium for the muscle twitches, and while I wouldn't say it actually "fixes" anything I do notice a difference when I don't take it so I know it's doing SOMETHING. Magnesium plays a role in nerve conduction and muscle function, so it doesn't hurt to give it a try. My neurologist was happy I'd started taking it. You have to be very careful not to take too much, though.

I believe all this happens because my nerves don't work right--plain and simple. My autonomic nervous system is messed up, and for me part of the fallout is that my nerves and muscles overreact to EVERYTHING, in addition to doing things they just aren't supposed to do. There's nothing like working at the computer all day long and having my fingers twitch for no reason. I couldn't tell you the number of times I've accidentally clicked on things I didn't mean to click on because my index finger suddenly twitched.

Hang in there. It will stop being a scary thing and become an everyday annoyance. I'd like to say it's something you get used to, but I still struggle with it daily. I've just learned to work around it most of the time, and let things happen.

On 3/4/2018 at 5:17 PM, Katherine said:

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.

 

I don't have orthostatic intolerance. I don't have orthostatic anything. That's what I mean when I say I'm invisible in the middle of an invisible diagnosis. 

On 2/27/2018 at 12:12 PM, 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.

I hope you've been able to get some answers in the past month or so. It's hard to go into a medical situation where the people who should know things just give you a blank look as if you've just made all those medical terms up. Good luck with your testing. I'd be really happy to hear about any results you get.

On 2/25/2018 at 10:33 PM, Always hoping said:

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.

Thank you. I really appreciate your kind words. I hope you are doing well.

On 2/25/2018 at 4:47 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.   

 

I'm sorry about your neuropathic foot pain. I have some, but it's manageable and not constant. That must be just awful. I hope you get some answers soon. Keep asking questions and pushing for help. And if you aren't getting answers or help, change doctors. It's a pain to have to retell your story, but it may be the best way to find someone who understands, or at least wants to understand.

On 2/25/2018 at 7:50 AM, Pistol said:

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.   

Thank you for this. I agree that the fatigue is the worst part. My husband just doesn't get it. I try to explain that when you HAVE to do things you can manage it, but then ability to do the fun stuff suffers. He tries to understand, but he really doesn't.

On 2/25/2018 at 5:22 AM, RecipeForDisaster said:

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". 

I'd love to be in touch. I"m not sure how to do that on this site.  I agree that diagnosis is tough, but what's tougher is when you finally have a diagnosis and it doesn't really make a difference. I just like having people I can turn to. Thanks.

First of all, thanks to everyone who responded to my feeble wailing. I really  hope I wasn't offensive to others with what I said--I'm just so frustrated that so few people get any of this, and that I can't be classified anywhere. To see so much emphasis on one symptom really gets to me sometimes. I hate labels, but in this case labels make the difference between a real medical condition and hypochondria. When I can act like a grown up and stop whining, I do get something from many of the discussions, even the POTS-heavy ones, but somehow it's not enough. I have one friend who has dysautonomia, but her symptoms are nothing like mine so we can only support one another to a point. Now my oldest daughter is having symptoms of POTS or OH in addition to several other things and is going through tons of testing, so at least she and I can support each other.

The past few years have been filled with increasing frustration--my neurologist moved away and I was assigned to a new one who followed the party line at his institution and told me I didn't have dysautonomia at all because I didn't have POTS (though oddly enough he NEVER removed the diagnosis from my record), but that I had some form of autonomic dysfunction. He also said I didn't need to see him anymore. Why wouldn't I need to see a neurologist if I have a neurologic condition? I tracked down my old neurologist who only moved 60 miles away, and am now back under his care. That helps some. At least he knows me and I don't have to retell my story. I need to get a new primary care doctor and I dread having to start over, but my current one is kind of a jerk and I'm tired of him blaming everything on my weight. Yes, I'm heavy. No, I can't exercise more right now. No, I'm not going on your weird fad diet. Ugh.

I haven't really found relief for many of my symptoms. The muscle twitches, especially in my fingers and around my eyes, are exhausting. I have a new, visible twitch under my left eye that's been going on for about 2 weeks now. You wouldn't think that something so small could be so tiring, but it is. Some of it is simply mental exhaustion, because every time that muscle twitches for no reason I'm reminded that I'm invisible. I have migraine activity that doesn't usually involve pain--though I should say "in the past it didn't" because now many of my migraines also involve some pain. I went more than a year with almost no letup of migraine that involved visual disturbances, mild disorientation, mild aphasia-like symptoms, and downright exhaustion. I also have Raynaud's Phenomenon and take two medications for that, in addition to a med for hypersomnia. I have pernicious anemia, so I take B12 daily. 

I have always had mildly low blood pressure (when I was in my 20s and 30s, it would run at 90/50 or 100/60, and now that I'm over 50 it's running at 125/75 or 130/80) and I do experience some dizziness, but get this--I can stand up and walk 50 yards, and THEN sometimes I get dizzy.  And not all the time. When I've ridden the bus, standing up while it's moving to walk forward to the door just before my stop would make me REALLY dizzy. I've relayed all of this to my doctors and get blank stares. I have vertigo...I have something visual...whatever. None of it ever made sense until I got a dysautonomia diagnosis, and that umbrella explanation for all my symptoms is still a pretty shaky one. My neurologist asked me last fall if I wanted to get started on a boatload of testing to really pinpoint things and at the time I said no, but I think I'm past due for the full battery. Everything that's been done has been piecemeal. The only thing I would refuse at this point is more skin testing for neuropathy--we know I have it, and I'm NEVER letting someone do punch tests again. They just hurt too much.

The one thing I think I hate the most about all this is how much of the time I feel sorry for myself. I know that depression is one of the standard issues almost all of us face regardless of actual formal diagnosis, and I really fight the urge to lie down and give up most days, but I get so fed up with pushing for answers and knowing I'm not going to many, if any at all. It helps so much seeing everyone else's symptoms and struggles. It's so good to know I'm really  not alone. 

I have also had these a couple of times. It could be morphea: https://emedicine.medscape.com/article/1065782-overview

I need to have mine checked out the next time one appears. They come and go.

I know this is an old post, but I stumbled on it and liked reading through the list. I kinda giggled when someone posted that you had 'fatigue' twice. I personally think it should be listed more than twice! LOL

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?