eaudire

Just popping in after a few months because this really resonated with me. For me, too, life is increasingly seeming like an exercise in just pushing through, made bearable by the possibility that one day I won't feel this way on a regular basis. Self-deception isn't exactly bad if it's another tool in your box, I guess. I'm glad a couple of people have found some relief with Mestinon. I'm going to bring it up with my doctor at my next appointment. Willingness to try medications has become my number one criterion for doctors, as I'm also essentially undiagnosed at this point.

Hi all, Just wanted to provide another update and ask for some feedback. I finally had my Tilt Table last week and am still awaiting the written report, but was essentially told at the hospital that the test assesses the patient's tendency toward vasovagal syncope, and that, since I did not exhibit any of the related symptoms, my test was "negative." However, the nurse practitioner overseeing the test did mention that my heart rate increased from 72 bpm to 137 bpm when the table was elevated to 80 degrees and that it kept fluctuating widely throughout the test. She seemed to think that, since my blood pressure fluctuations were normal and my heart rhythm was stable, I just needed to drink more water and eat more salt and everything would be dandy. Sigh. Of course I have considered and implemented those suggestions in the past, to no avail. Have any others experienced this? (i.e., meeting the diagnostic criteria for POTS and doctors essentially thinking nothing of it.) I'm sure I'm far from the only one. In other news, the best development of my week was finding a cardiologist who was willing to consider the possibility that I have not, in fact, been consistently dehydrated for the last 18 months and to say: "You have POTS. It's caused by dysregulation of the nervous system, and unfortunately we don't really know more than that and therefore don't have very effective therapies for it." I knew all of this, of course, but for some reason it felt really good to have someone with a medical degree actually say it. I'm testing out Metoprolol and am trying to weigh the benefits/drawbacks, but am only on the second day. Feeling pretty fatigued and a little low in spirits but wondering if that'll improve in the coming days. Did any of you on beta blockers experience an adjustment period? This latest doctor (whom I like) seems to think that, since I'm a non-fainter and just experience general malaise, tachycardia and brain fog, beta blockers and anti-anxiety meds are essentially the only options. Is it a good idea to push for other options right now or should I go down the (possibly expensive) road of further autonomic testing that might or might not yield more information? Arrrghh. Big questions I know, and different for each person.

I'm curious about the connection between craniocervical instability and POTS in relation to my own symptoms, and wondered if those with the condition could answer a few questions. 1. What are your most prominent symptoms and which did you notice first? (i.e., did you start having terrible head and neck aches, or did you notice heartbeat irregularities first?) 2. Which tests confirmed the diagnosis? (i.e., an MRI/X-rays/other imaging, and were they done supine or upright? Did they include both the brain and spine?) 3. Did they determine the cause of the instability? Many thanks for any and all replies! Trying not to have too many unnecessary doctor visits and be as strategic as possible about the ones that I do have.

Hi ladies, Thanks so much for responding - I did read that the majority of POTS sufferers don't actually faint. I've certainly experienced the postural heart rate increase without even really feeling faint. I should probably clarify that I'm not hesitant to do the TTT because I'm frightened of how I'd react, but because I guess I'm not sure how helpful a positive diagnosis would be in what seems to be a relatively mild case like mine, especially when I've already done the poor man's version (which was confirmed at the ER). I say "mild" because, if I didn't have to do a mentally taxing job, I'd still be able to function reliably and do everything I normally do. I'm short of breath and my head feels like it's full of cotton, but I can cope with that stuff, even if it's not pleasant and pretty much constant. Basically, I'm a little concerned about spending a bunch of money to do a test that will result in spending more money on medications that don't actually help and might even do long-term damage (?), when I can basically walk/sleep/eat normally. It seems like automatically starting a regimen of Florinef or Midrodrine might be a little excessive. Also, I've increased my water intake and go to the gym regularly, and nothing I actually *do* in the short-term seems to have any impact Any improvement I've experienced has been so gradual that I question whether it has even taken place. At the same time, I do feel moderately crappy all the time, so it might be good to actually see a doctor who has monitored a few cases of POTS to get his/her opinion on my case. I guess my actual question is (for DizzyGirls and WinterSown): did your TTT lead to other, more informative neurological testing? Or did your doctors just have you try out the typical course of treatment for POTS - Florinef and/or beta blockers and/or salt tablets and exercise - to see if it worked? Have you seen an autonomic specialist and are there any specific additional tests that they usually do that a regular neurologist wouldn't necessarily think to recommend? For BuffRockChick: Best of luck for the test next month and I hope you get some useful information that will help to relieve your symptoms. Out of curiosity: do you experience symptoms more or less constantly, or do you ever get a break? (For ex., when lying down or sitting?) Have your previous medical tests revealed anything that might suggest a cause? (Sorry to bombard with questions - just trying to get an idea of other people's experiences.) For WinterSown: The brain exercises sound intriguing. I've wondered, though, if the problem is decreased blood flow to the brain and our brains are not actually defective, how exactly these work. For example, when I'm trying to work through a difficult problem at work, no amount of thinking or focus actually seems to direct the blood to my brain. I don't feel the same physical sensation as before when I'm trying to think hard, if that makes any sense. I just feel a blockage. Do you experience this as well? Do you find that your head feels like it's physically "working" better after doing brain exercises? Thanks again for your help at a difficult time. Wishing you all relief from this and lots of support/care in the meantime! eaudire

Hi DizzyGirls, Thanks for your replies. I've done a poor man's TTT and it confirmed my suspicions, so this is indeed one of the reasons why I'm not really sure why it's necessary to have the actual test done. A few questions for you: 1) Why do you say the test was barbaric and what exactly did it involve? (I've never fainted from POTS and don't have pain or gastro issues, so I guess I never imagined that I would have a terrible reaction to it, but maybe I'm wrong.) 2) Were the results of the test meaningful in any way? Did they eventually help to pinpoint a cause or suggest a course of treatment? 3) You said one of your daughters was taking Propranolol - would you mind sharing a little more about her exact symptoms and how she's improved? (I was prescribed this ages ago and didn't end up taking it.) Many thanks again for responding.

I've been reading this forum for many months now and have only just decided to post. I just wanted to say I admire you all so much for your fortitude and bravery in dealing with such a difficult condition. I know we're not all dealing with exactly the same symptoms or underlying conditions, but the fact that most of us have struggled to describe our symptoms accurately and have had successive inconclusive lab tests suggests to me that this might be a good place to seek opinions on my condition and guidance for next steps. At the outset, I just wanted to say that I haven't been diagnosed with anything, for a number of reasons: 1) After a series of unrevealing medical tests, my neurologist referred me for a TTT about a year ago, but I balked when I saw how little of the cost my insurance plan would cover. That, coupled with my optimism that I'd recover within a year and skepticism that a positive Tilt test would actually help pinpoint the underlying cause or result in effective treatment, caused me to put it off. 2) I'm not seriously physically incapacitated by this condition, for which I'm grateful, so I can't really justify not working. The persistent brain fog and general malaise make it extremely difficult to do my writing-intensive job, though, and I don't know if I can handle another year of sobbing furtively in my cubicle multiple days per week. Anyway, here's the story: the second week of March 2016, I sensed what felt like a couple of off-rhythm heartbeats and felt suddenly dizzy one day at work. I didn't really think much of it, but remembered that I had started taking Vitamin D supplements two weeks prior and realized that I had (unwittingly) been taking quite a high dose (10,000 IU/day for about two weeks). (This apparently isn't high enough to cause toxicity and every doctor I've seen has rejected it as a possible explanation, so...shrug.) I stopped taking them immediately when this happened. The next day, I returned from lunch with my heart racing, very shallow breath and nausea, so I went to the ER. My HR was 140 at the time I was admitted to the hospital. I had a comprehensive metabolic panel done, which was unrevealing. The nurse noticed that my HR increased abnormally from the prone to the upright positions (although this was never actually included in my final report). I was essentially told to drink some water and chill out, and to follow up with a cardiologist, which I did. My ECG and a 24-hour Holter test showed nothing, and the doctor reassured me there was nothing wrong with my heart. (However, the Holter test did show 6 episodes of tachycardia (>120 bpm) lasting 4.2 minutes total on a day when I was mostly sitting and did no exercise. The doctor didn't comment on that). Then I went to a neurologist and was given a brain MRI (everything fine), B12 test, lyme test, thyroid test, tests for various inflammatory autoimmune disorders (lupus/rheumatoid arthritis), vitamin D and celiac (all negative or normal). She then ordered the Tilt test, which I've yet to do (although I'm convinced, based on my own poor man's version, that it would show something, at least on some days of the week). During this time, my symptoms have been: -Lightheadedness (when my symptoms were at their worst, my head actually felt heavy like a bowling ball moving out of synch with the rest of my body; I basically felt/feel like the blood is being drained from my head - I felt an actual draining sensation at one point when by symptoms first started.) -Insomnia (this has mostly improved, but for a while it was absolutely MISERABLE. No matter how tired I was, I physically couldn't sleep - it was like my head wasn't receiving the signal to fall asleep; it felt like a physical blockage. Now my sleep is shallow and I don't sleep as much as before, but it's better.) -Blurry vision (it's generally always somewhat blurry, but noticeably worse in the evenings, like my eyes are having a hard time adjusting to dimmer light.) -Rapid heart rate (It used to be so fast I could feel it vibrating against the mattress. Now I probably vacillate between 65 (very relaxed, lying down) and 100 (standing up after a long period of sitting)). -Nausea (probably the most greatly improved symptom) -Urinary urgency (very occasionally get passing urges to urinate when I don't actually need to) -Brain fog (it might be slightly better now, but it's honestly hard to tell sometimes. I feel like my brain is constantly coming up short in every task.) I guess the most remarkable thing to me is that these symptoms - while they sort of wax and wane - don't occur in the form of episodes or flares. They've pretty much been constant since everything went off kilter last March. I think what I'm really describing is the absence of internal stability rather than the presence of specific symptoms. Symptoms I don't experience: -Faintness (I've never once fainted) -Fatigue (I feel like crap, but that's different from true fatigue that prevents you from getting up to do things - this is why I kind of doubt this is autoimmune-related.) -Gastrointestinal problems (apart from the nausea, I haven't had any issues with this.) -Pain or headaches There's a lot more I could say, but this is getting very long and I apologize for the rambling. Over the last year, I've tried to go to the gym fairly regularly (3x a week, only treadmill running for about 30 minutes), but I have a sedentary desk job, which just makes it feel like I'm playing catch-up all the time. I'm a 29 year-old female and have no other known health problems (healthy height and weight, balanced diet, drink water regularly - although I didn't used to before this happened). I was seeing a therapist for some low-grade anxiety that I was experiencing in connection with my job and relationship, but I REALLY hesitate to attribute this condition to psychological factors (I've been much more stressed at other periods in my life and didn't experience POTS-like symptoms). Anyway, things seem to be improving so slowly that some days I wonder if they really are improving. I just don't know if this is normal or what I should expect. I guess we're all in the same boat there, but I'm not sure where to turn. I live in NYC and my insurance won't cover me out of state, so I'd have to see an in-network doctor here. Should I bother with the Tilt test and start trying a bunch of medications for symptom relief, or do you think I'll just be told to wait it out? How useful is the Tilt test really if your symptoms are relatively subtle like mine? I guess that's it for now.