Some Kind of Autonomic Problem?

Treatment and medication
1

This discussion will mark the third lengthy discussion I post on this site about the symptoms that have stubbornly continued to plague me for over a year now with no diagnosis or solution. Still, I think I've been getting closer to an explanation slowly but surely, hence switching to more appropriate forums here to ask about things. I plan to explain the important points again right now (I've gotten used to having to explain it over and over again even if it gets tiring), but, in the event that you want to take the time to read the many lengthy posts in my other two discussions, I will link to them here.

https://patient.info/forums/discuss/mysterious-dizziness-and-other-symptoms-567591

https://patient.info/forums/discuss/unusual-chronic-migraines--570711

Anyway, I've been experiencing a laundry list of fluctuating, debilitating symptoms on a more or less constant basis since around February of 2016, and, even after seeing multiple doctors (general practice, ENT, neurologist, neurootologist, physical therapist, psychiatrist, etc.) multiple times and having multiple tests done (MRI, VNG, hearing test, various tests of vestibular or cerebellar function, neuropsychological testing, balance testing in a booth with tilting floor and walls, blood tests, neck x-rays, etc.), I still haven't figured out what is causing all my symptoms or what I can do about it. The only results that haven't been normal (other than the hearing impairment in my right ear that has been consistent since we  discovered it in 2nd or 3rd grade) were the balance testing, which was all over the place, but verified that my balance was impaired somewhat, my vitamin D, which I got back up to normal with no change in symptoms, my mental processing speed, which was in the 8th percentile but was the only cognitive function in the neuropsychological testing that wasn't average or better, and not quite enough curvature in my C3 and C4 vertebrae. My symptoms have significantly impaired my ability to function, so needless to say it's kind of an urgent matter for me to do something about them.

As for my symptoms themselves, the most consistent and noteworthy are a constant sense of dizziness/lightheadedness and mild to moderate balance problems. Both of these are my only symptoms that have never gone away, but even they vary in severity on a day-to-day basis. My dizziness is basically a lightheaded, "floaty" feeling like I might faint (in fact, I used to be concerned that I might pass out in the middle of a work shift when symptoms started) combined with a swaying or rocking sensation. I do not get a feeling of myself or the world around me spinning or of feeling like I'm going to throw up. Therefore, my dizziness seems to be some combination of presyncope and possibly disequilibrium. After all the vestibular stuff I've gone through that has gone nowhere, I think I can say with confidence that I don't have true vertigo and my vestibular system has little to nothing to do with the problem, however. Both strangely and thankfully, I have never once passed out (to my knowledge) or fallen over in the over a year that this has been going on to a varying degree 24/7; I think I've come close to both at least once or twice, though. 

There are a few things that make my symptoms worse that I've noticed. For one, it tends to become worse the more upright I am, being worst when I'm standing or walking and best when I'm lying down (with sitting falling somewhere in between). Next, it consistently worsens with head and neck movement (it usually worsens for a while after shaving or showering due to the neck movement, for instance), though up and down head movement seems to exacerbate it more than side to side does. Physical activity, even mild activities that I had no problems at all with before symptoms started, worsens symptoms quite reliably, too, but I'll get into more about that later. Finally, while I'm not sure of the specific relationship, it feels like stress or weather changes can also worsen my symptoms sometimes.

Other than the dizziness and imbalance, there are quite a few other symptoms that tend to come and go with varying frequency. Some of these are cognitive, like difficulty focusing, tendency to "zone out," lack of physical and mental energy, and so on. I sometimes get a feeling of weakness when symptoms are bad, especially in my knees and my limbs in general. It's not uncommon for me to get headaches with a pulsating, throbbing feeling (sometimes with a low-pitched, quiet, and hard to notice ringing in my ears). These range from barely noticeable to highly uncomfortable, but I wouldn't call them painful. At times I have gotten "chills" or felt hot and sweaty for no good reason (in a basement that's under 60 degrees Fahrenheit, for instance), so my temperature perception seems to be off at times, too. Although uncommon and brief, it does also seem like my limbs go numb or fall asleep more easily than they used to, especially my left arm and the pinky and ring finger on my left hand. Finally, I used to have stomachaches that started at the same time as my other symptoms, but they went away after I was diagnosed with irritable bowel syndrome and started taking a probiotic. It may be that they were not actually IBS and it was no coincidence that they started at the same time, but I'm not sure.

Not that I've ever been especially athletic or fit (in fact, my gross motor coordination has always been kind of clumsy, although my fine motor coordination is considerably better), but one of the most conspicuous aspects of my symptoms (and one of the first I noticed) has been an exaggerated intolerance for physical activity. In some cases it's even been routine activities that I had done many times before symptoms started with no problems suddenly starting to give me trouble. Things like stocking when I was still working retail, picking up dog poop in the back yard like I had done every so often in the past, going up and down stairs multiple times with laundry baskets/hampers, or even just making my bed have often made me notice my heart rate going up and left me hot, sweaty, and "winded" as though I had just finished running laps or something. Back when I thought something might be going on with my vestibular system and was doing vestibular rehab exercises (which I stopped after they didn't help at all after over a month), I would do these exercises in a cold basement that mostly just involved balancing in place, stepping, or marching in place, yet I would almost invariably be overheating and drenched in sweat after finishing them. I've also had a burning sensation in my throat on rare occasion, which I think is probably dryness from catching my breath, or tremors, which are mainly in my hands and sometimes my legs; these typically seem to happen with activity, but I think there've been at least some occasions where they occurred without it.

Anyway, those're the important details about my symptoms. Along with the multiple doctors' appointments and tests, I've gone through stages in what I suspected might be causing it all. At first I thought it was Meniere's Disease brought on by allergies due to another period of time in 2012 when I also had dizziness and was diagnosed (perhaps erroneously) with Meniere's. But nothing was pointing to actual vertigo or vestibular problems, and allergies seemed to have nothing to do with it. For a while, I didn't know what to suspect, with something called Persistent Postural Perceptual Dizziness being the best guess, although even that didn't seem to fit in certain ways and couldn't explain certain symptoms. Later, I thought maybe it was vestibular migraines or some other unusual form of chronic migraines. However, my headaches weren't painful, light and sound sensitivity, as well as ocular symptoms, were extremely rare and relatively mild, and there didn't seem to be distinct "attacks" with any kind of warning or distinct pre- and post- phases. Then I was informed of something called Atlas Subluxation that can cause migraines and many of my symptoms themselves and would explain symptoms worsening with neck movement. However, I really had no neck pain and hadn't noticed stiffness in my neck, and just neck x-rays just recently showed that my atlas and axis (the first two vertebrae) were completely normal.

Very recently, though, I ended up looking into vasovagal syncope and various types of autonomic problems, and it seems like a lot of the symptoms and stuff I'm finding match what I've been experiencing very well, almost to a T. There seem to be two main questions regarding this possibility. Why does it appear that I've never actually fainted when I've been feeling faint 24/7 for over a year? And, if my autonomic nervous system has been going nuts for a year straight, why would it possibly go so crazy on such a consistent basis for such a long time?

So, after saying all of that, my question to all of you is this: do you have an ideas about what specific autonomic problem I might have or what might be causing it? Also, what kind of doctor would I even see about diagnosing and treating this? I do appreciate your reading this long post and any useful possibilities or advice you can provide. Slowly but surely, I feel like my hunches about possible causes are getting closer and closer to matching up with my symptoms, so I can only hope I really am getting closer to root causes.

2

Sounds like classic pots to me. It comes in many ranges of disability and intensity. You can do a simple *poor mans tilt table test* look it up.. that will give you some indication as to wether that is the right direction.  The symptoms can fluctuate widely from day to day and are made worse by many different things. Hormones if you are female being a big thing.  But changes in temperature , viruses , stress etc all will have an effect on what you experience. It usually comes on after a bout of flu/cold.. or any other viral type infection that stresses the imune system.. some people will have bad sympeoms for a year or so and then it will ease and start to improve.. while others are stuck with it for life and it will wax and waine over the years.  Your allerhies you mention are also linked. There is a Mast Cell disorder issue that comes with POTS. IT seems the thing that causes the pots also causes your mast celles to go on the war path causes allergice reaction, these again will improve and get worse as the pots does. Its all linked together. There are a few types of subtype pots so its best to narrow it down as the treatment can be very different depending on which type you have.   Hope this helps

3

To be honest, I think it was a stretch to suspect allergies in the first place. Although I have had a bit of stuffy/runny nose and watery eyes from time to time, I've had very little in the way of classic allergy symptoms other than that, and it hasn't seemed to vary seasonally (though I haven't been outside a lot, to be honest). I was even on antihistimines for a while, but they didn't seem to do anything to help, so I stopped taking them. In any case, if allergies factor in somehow, the main one is probably dust, which I figured out I have a moderate allergy to. I live in an old "fixer upper" of a house and we have three dogs (who don't shed all that much), but I also found out I have a mild dog hair allergy, too), so some level of dust is unavoidable without bending over backwards big time (which I don't have the stamina for).

As for some of the other things, I'm a 27-year-old male, so hormones probably aren't a major factor. However, I live in Wisconsin where we say, "If you don't like the weather, wait five minutes," and it's not uncommon for temperatures to rise or drop by one or two dozen degrees Fahrenheit from day to day at certain times of year, so it may very possibly be temperature changes I'm sensitive to. I wasn't sure if it was temperature, atmospheric pressure, humidity, or something else that was making the difference. I think I may have had a case or two of cold and/or flu not too long before symptoms started, though I don't recall specifically (and I'm bad at noticing I'm sick if I'm not specifically paying attention to it, such as with stuff like mild colds that don't make their presence blatantly obvious).

I recall reading that PoTS generally has an underlying cause, doesn't it? Are you saying simple viral infections could be that underlying cause and the PoTS could continue even after that infection is gone? Or are you saying I may have an auto-immune disorder resulting from infection that might be the underlying cause of PoTS? PoTS itself seems like a neurologist or maybe cardiologist would be the appropriate doctor to see (if it's a neurologist, I'll need to find a new one because the one I was seeing decided that he would assume it's all psychogenic and stop listening to anything I say), but, if it's something with my immune system, would I want to see a rheumatologist instead?

Honestly, out of the autonomic conditions I briefly read about, PoTS definitely seems like one of the most fitting for my symptoms, and it is true that my symptoms get worse the more upright I am. However, the effects of standing up versus lying down seem like a central feature of PoTS, yet, in my case, the difference in severity of symptoms between different postures honestly seems pretty subtle. Standing up or walking around, especially for extended periods, will worsen my symptoms, but the difference is not all that large, at least not immediately upon standing up (I think maybe it gets worse the longer I'm on my feet). Head or neck movement seems to have a much more noticeable and immediate exacerbating effect on my symptoms than standing does. I guess that's the main thing that seems potentially iffy about PoTS other than the question of what the underlying cause for PoTS could be.

Anyway, thank you for the information. I'll still have to figure out who to see about this and/or what's causing it if it is PoTS, but just having an actual diagnosis for it that fits would be a major step toward doing something about it.

4

You need to find a cardiologist who both understands and treats POTS.. and if they think you need to see other specialists they will advise you.   POTS can be brought on by a combination of things, like i said before it could be a viral infection of some kind.  It is also classed as secondary if you have an underline illness as well.. such as CFS (chronic fatigue syndrome) or Connective tissue disorder.. there are others but they tend to be the main ones. Do you have anxiety type symptoms also?  there is a rare subtype of POTS which i have that causes similar symptoms to standard POTS but does not cause the fainting issues as the blood pressure rises on standing rather than falls as it does with standard pots ,which is why people tend to pass out (lack of blood flow to the brain)  With Hyper pots you tend not to get the sudden sensation of dizziness on standing … it tends to increase slowly and the more you are on your feet the worse you feel.  Its easy to check if its hyper pots as you will have a heart rate rise and also a blood pressure rise on standing.. with standard pots you have a heart rate rise and a blood pressure fall on standing. When I say Hyper Pots its full name is Hyperadrenergic PoTS. 

5

First off, before I forget, I forgot to mention something that may be relevant to the possibility of PoTS. I've had my blood pressure and pulse taken multiple times at doctors' appointments since symptoms started, and every time it seems like they've been good. However, all of these measurements have been with me sitting down in a chair with my head straight as far as I can recall, so it's possibility that there's a variability that wasn't noticed. Also, I actually do recall having a tilt table test of some kind when I traveled across the state to see a neurootologist, but I wasn't hooked up to any kind of heart monitor, so it seems like it must've been a different kind of tilt table test checking for nystagmus and things associated with vertigo or vestibular problems.

On a different note, I don't have any of the underlying illnesses you mentioned as far as I know, though it's not impossible I could have something undiagnosed. As for anxiety, I actually do have a history of it since I was diagnosed very young with generalized anxiety disorder (and ADHD, but some of the aspects of it have gone away as I've aged). I've been on medications for it most of my life (mainly antidepressants), as well. However, in this particular case, it doesn't seem to be a major symptom itself. When this all started, I'd say that my anxiety was relatively well-controlled compared to points in the past. Plus, although I've had a few rough spots and having these debilitating symptoms nobody could seem to figure out or treat has taken a toll on my mental health, I haven't really felt particularly stressed or anxious compared to normal for the majority of the time since this all began. It seems like any anxiety is mainly a result of my symptoms and my lack of success in diagnosing or treating them rather than a symptom itself, but that's just my impression.

Even as the one experiencing it, I'm really not sure whether to think it's standard PoTS or Hyperadrenergic PoTS. Judging by the name, it sounds like the latter involves an excess of adrenalin/epinephrine, and I have been taking medications for the anxiety and ADHD that increase noradrenalin/norepinephrine activity, but I have no idea whether there could be any relation there given that epinephrine and norepinephrine are separate but related chemicals.

6

Interesting as i was diagnosed with General anxiety disorder for 15 years before we realised it was actually HYPER POTS.  It can appear as an anxiety disorder for years until you finally have a full collapse and they realise that infact its something else. HYPER POTS is often diagnosed as and anxiety disorder as thats how it shows itself its only when things get worse and other symptoms  out shadow the anxiety, that patients and doctors realise maybe there is something else going on.  When i originally contracted the POTS it was after a bout of glandular fever at the age of 20.  I started to suffer with heart issues and ended up spending time in hospital for it. The POTS was not diagnosed at the time as in 1989, POTS did not have an official name, it did not get that till 1992/3   So i was just sent on my way with meds, then later diagnosed with an anxiety disorder. 

​Reading through many forums i found my story to be very common and to me it looks like you are also a victim   

7

It's certainly possible, but I think it's still possible the anxiety is not a misdiagnosis even if I do have Hyper POTS now. I've had my diagnosis of generalized anxiety disorder since kindergarten or something like that (which was supported when I got tested again around 3rd or 4th grade or something), so I would've had to have had Hyper POTS since I was a toddler (and it doesn't seem common for kids that young).

I can vaguely recall some things that might suggest something of that nature, but it still seems like a stretch to conclude it's all been POTS all along. The only time in my life I can recall actually fainting was around that same time age as my first psychological testing if I remember correctly. Basically, it was at some anti-drug presentation at school, I think (maybe even the first time in my life I had heard about that stuff), and I was a sensitive and easily frightened kid (and an unusually intelligent one for my age), so I ended up passing out from how scary they were making it all sound. I vaguely remember teachers dragging or carrying me away as my vision faded. If I'm not confabulating here, I also recall having these rare and exceedingly brief dizzy spells since I was very young (don't know how young) that I never paid attention to or thought to mention to anyone else for my entire childhood, really. I think they were just brief episodes of being dizzy and lightheaded, hearing a ringing in my ears, and sometimes having blurring of vision, all for around 5-10 seconds. I was hospitalized for dehydration at some point in middle school, though I don't remember if there was anything else leading to it (I've had troubles staying hydrated for a long time and sometimes still do). I've always tended to sweat more than most people, which is a trait my mom says I get from her. Well, and, as I've said, I have a long history of clumsy gross motor skills, below average physical stamina, and generally just not liking sports, physical activities, or "playing outside in the nice warm weather" in most cases (with exceptions, one of the biggest being swimming). Heck, I've pretty much always been kind of skittish and easily intimidated at times, too. Now that the specific examples are coming to me, I'm actually really fascinated by the possibility that my autonomic nervous system may have been out of whack for almost my entire life (even if it wasn't full-blown PoTS at the time) and contributed to the person I am today. My mind is honestly blown right now just thinking about it, but I probably will never have any way of knowing for certain.

8

From my research on Hyper pots there seems to a pre disposition to it.  I myself also suffered with an anxiety issue all my life, infact my first memory was anxiety based.  There is a sub type of hyper pots where people are born with a faulty gene that causes adrenaline to be released excessively, there also seems to be an enzyme missing which allows the reuptake of adrenalin so its a bit of a double whammy.   Some people will go through life with just a  background anxiety disorder , while other , often around puberty or due to viral infection , will go on to develop Hyper POTS..   Look up Hyper pots .. on youtube.

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9

Actually, upon further thought about this mind-blowing possibility, I realized that the sweating isn't the only thing that runs in my family. Anxiety, ADD/ADHD, and irritable bowel syndrome also do (possibly among other things I'm not thinking of), all of which are related to the autonomic nervous system. It's a long shot, but what if there's some kind of hereditary autonomic dysfunction in the family?

10

If you want, you can PM me the links since apparently linking to YouTube is against the rules in discussions themselves, but otherwise I'll just try searching there for myself.

Also, upon thinking more about it, I think that it's more likely I just had characteristics predisposing me to it rather than POTS itself as a kid. Considering I haven't heard of anyone in my family other than me having a medical condition like it, I also think it's more likely what runs in the family is some kind of predisposition. This is just my hypothesis, but I think maybe it's a tendency towards an excessively strong sympathetic nervous system that runs in the family, and that predisposes us to any disorder related to too much sympathetic activity or too little parasympathetic activity, including anxiety, ADHD, IBS, excessive sweating, and a number of other things. And that would mean that it's that overall dominance of the sympathetic system over the parasympathetic one, not any specific disorder, that has influenced our personality development in combination with our life experiences and other traits. That's what would make the most sense to me, at least.

11

I think I've finally found an explanation for my symptoms after over a year of everything being unresolved. Getting diagnosed and treated by a doctor will take a little longer, and I can't say how well treatment will go, but by doing a self-test with my mom's pulse occimeter (she's a nurse), I've all but confirmed it's some form of POTS, hyperadrenergic or otherwise.

Actually, the specifics of what happened with my heart rate were kind of interesting in and of themselves. When lying down for 10 minutes, my heart rate was generally in the ballpark of 80-90 beats per minute most of the time. Then, after standing up, it shot up (past 120 bpm, I believe) very quickly. It started dropping closer to 110 or 100 bpm after that, but it never went below 100 bpm before it started rising again. My heart rate fluctuated up and down a lot on the way up, but eventually it got to the 130 to 140 bpm range and spent the rest of the time hovering there without ever going past 140 bpm in that 10 minutes. Supposedly the diagnostic criteria for POTS are that your heart rate either rise up to 120 bpm or rise by 30 bpm or more within 10 minutes of going from lying down to standing. Mine did both. Furthermore, although my heart rate probably has exceeded 140 during physical activity when I've gotten hot, sweaty, and short of breath, the fact that it seemed to eventually stabilize somewhat may also explain why I've never experienced actual syncope in the past year in spite of experiencing presyncope pretty much 24/7.

Since I wasn't sure what kind of specialist to see, exactly, I made an appointment with my general practice doctor since finding someone appropriate to refer me to is part of his job. I also haven't seen him since around a year ago, soon after this all started, so checking back in with him isn't a bad idea, anyway. Unfortunately, the earliest I could get in was May 1st without checking in early in the mornings when cancellations tend to happen. Then there's the fact that he most likely will have to refer me to someone else in spite of the fact that I fulfilled the diagnostic criteria, so I may have to wait a bit longer after that, as well. Still, though, it's a relief to finally feel like I have an explanation and my research has paid off in the end.

12

sorry for lack of response just been unwell, oh the joy that is POTS

Your heart rate is pretty much the same as mine and i would say classic for HYper POTS.  IM glad youve found a way forward and now have a path to follow. I wish i had this route when all my issues started as its taken 28 years for me to finally have all the answers.  Dont let them fob you off.. if you dont get what you need from one doctor then find another!!  KNowing what you are dealing with makes life alot easier, more able to cope and pace yourself so you can get the best out of life.  Let me know by PM how you get on    as i would love to compare notes from time to time and maybe learn something new from you and your future treatment. x

13

Wait, are you saying that it took 28 years for you to even discover what you had before even starting to treat it? Since I'm 27, that's longer than I've even been alive! And I thought over a year of it was bad...

In any case, I'm not sure what I'll have to offer in terms of treatment ideas/experiences, but I guess I just don't know what's going to happen yet. While I'm waiting on doctor appointments, probably a good place to start is trying to be better about keeping my fluids up and maybe starting to take regular walks as an easy way to start getting some amount of exercise for my legs especially in spite of my exercise intolerance. I can also look into other things, but, in any case, I can probably start putting my efforts toward other things now that I don't really have to hunt for an answer about my symptoms anymore.

As for the doctor thing, I'm not too worried about my general practitioner taking me seriously and referring me to someone appropriately, but the uncertainty comes after that point. I don't know if he'll be able to refer me to a cardiologist, neurologist, or some such doctor nearby or if he'll have to send me across the state to an autonomic specialist. If I do have to go across the state to get diagnosed and treated, I certainly hope I won't have to go all that way every time I need POTS-related medications tweaked. Still, even if it does take 20 minutes and a pulse occimeter to prove, I think it would be hard for any doctor who believes in evidence-based medicine and isn't willfully ignorant to deny the heart rate numbers staring him/her in the face.