Katja

I have this, but the face muscle slackening is usually unilateral, for me (either side). I have no clue why this happens, at this point it's one of a long list of unexplained symptoms.

your blood pressure does not have to drop when you stand - some doctors actually feel that if your blood pressure drops, then you don't have POTS. The main criteria are orthostatic symptoms, and an increase in heart rate when standing up (over 120bpm, or an increase of at least 30bpm).

I'm so glad I saw this! It reminded me that my vit. D levels were somewhat low just about a year ago, and I've recently been having a lot of bone pain/diffuse body aches, and muscle weakness, kind of out of nowhere. Maybe this could explain why - I'll ask my doctor about testing my levels, when I see her on Monday.

sorry - Celexa doesn't have a particularly rough discontinuation. as for side effects, I think it's about average. I somehow managed to confuse it with another drug :-P.

I think I may have had something like the empty feeling you describe, but I'll have to think about it - I'm very tired and having trouble remembering clearly at the moment. I did have a very unpleasant "emptiness" in my head on Seroquel, though this was among the least of my problems with it - I'm not sure if this is what you describe, though. I think Celexa has a relatively low side effect profile, though you prob. don't want to quote me on that, but it does tend to have a somewhat rough discontinuation, if you end up needing to stop taking it. This depends on person, but I usually no longer pick my meds by side effect profiles, since in my experience, it's impossible to predict which med will become your wonder/nightmare drug, in advance of taking it. If there's good reason to believe it may help you, and you're feeling unwell enough to need it the first place, it's usually worth a try. Again, this is my experience, but I've had zero side effects to meds many other people can't tolerate, horrible side effects to meds everyone is typically able to tolerate, and paradoxical side effects to meds infamous for causing the opposite of what I experienced (e.g. agitation and anorexia instead of somnolence and weight gain). Have you tried other antipsychotics/serotonin antagonists, besides Zyprexa? Zyprexa can be pretty rough, on average, in terms of side effects - maybe a different AP would work better?

I met with my doctor last week, but wasn't able to go over this, and won't see him again for a while (he is an ANS specialist). I know he was very surprised by my testing results, since I believe it's typical for POTS patients to have a normal to increased Valsalva ratio/Phase IV overshoot, but I had a decreased ratio, and a normal Phase IV, though my TTT seemed to show florid POTS. The QSART results also showed that I had neuropathy. at first he seemed to think there may be something more serious going on, but other test results seemed to more-or-less rule this out. I'm very foggy right now, so I'm just posting the findings - does anyone have any ideas as to what my Valsalva results mean, in the context of the other results, or why the test results don't quite match up with one another? Also, what does it mean to have cardiac cholinergic impairment? Valsalva ratio: 1.26 (Female reference: 1.51-2.65) Deep breating: 12 (reference: 10-33) Tilt: supine: 141/95, hr 97 1 min tilt: 148/96, hr 131 5 min tilt: 132/92, hr 133 10 min tilt: 142/100, hr 136 (my blood pressure was unusually high throughout the testing - usually it runs more like 120/80, and my supine heart rate is usually around 75-90) Comment: "Heart rate responses to deep breathing were normal. Heart rate responses to Valsalva maneuver were mildly reduced. Blood pressure responses during Valsalva maneuver showed moderate reduced phase II and normal phase IV. Blood pressure was stable during the tilt. Blood flow in the left MCA was stable during the tilt. CO2 level and respiration was normal during the tilt test. Heart rate responses to tilt were exacerbated, maximal heart rate was 155 bpm. The sweat output was normal at forearm, borderline at distal leg, and reduced at proximal leg and at foot. Skin biopsy did show normal epidermal nerve density at both thigh and ankle." Conclusion: "Abnormal study. There was evidence of moderate vasomotor adrenergic, mild cardiac cholinergic and moderate to severe sudomotor impairment. There was also evidence of severe orthostatic intolerance during the tilt. These findings can be seen in a moderate autonomic neuropathy predominantly affecting sympathetic fibers associated with orthostatic intolerance." I did tolerate the tilt better than I expected, and didn't start to feel really crappy till the last half-minute, or so . I tend to have a delayed drop in blood pressure after standing for some time, or even sitting for a very long time - I often go down to 70-something/40-something, and probably lower, though by that point my monitor ceases to give me readings, and I usually need to lay down to keep from passing out. Oh, and I don't know if this could be a confounding factor, but it seems that I may also have EDS III (according to a geneticist and rheumatologist I recently saw). If I may have some vascular involvement from it, on top of the neuropathy, could that help explain anything?

carinara - I did want to clarify that I didn't want to imply, if this is how it came across, that he is not responsible for his actions, whether he is able to control his mood swings, or not. if he is aware of his behavior, then he is capable of making the choice to get help. if he does not make any effort to find a way to control his temper, then you can't hope to change him.

it may help if he sees a psychiatrist. what you describe sounds to me, offhand, like some variant of bipolar disorder, or another type of cyclical mood disorder (which simply means that he has periodic mood swings that he may not be able to control, possibly with an organic basis). medication may help, if therapy is not enough, though this depends on him being willing to speak to someone about this. maybe you could bring it up when he's in a good mood?

Melissa - thank you so much for your post - both the information and the advice.

my paternal grandmother's mother had very severe migraines, and from what I remember, would sometimes get nosebleeds either during or after them (my paternal grandmother, incidentally, was also diagnosed with ANS dysfunction in her youth).

this is really interesting. Thanks!

I have distal autonomic neuropathy. We're pretty sure that this is why I developed POTS, though I've also seen a geneticist and rheumatologist who both think that I have EDS, as well - so there may be multiple factors, but deconditioning is probably not one of them (I've never had bed rest, and was quite active when I first developed/re-developed symptoms). This is why I'm very glad that my doctor didn't just do a TTT, since the other tests he ordered make it more difficult for less knowledgeable doctors to assign their own causes .

I did find this: http://www.ncbi.nlm.nih.gov/pubmed/12210380 CLINICAL FEATURES OF SMALL-FIBER NEUROPATHY: Patients typically present with positive sensory symptoms, including tingling, burning, prickling, shooting pain, or aching....Patients may also have negative symptoms, including numbness, ?tightness,? and ?coldness.? Symptoms are usually distal and ?length-dependent,? but they are sometimes patchy or diffuse I do have the full text pdf - if you're interested, I could maybe email it to you.

I have fairly dramatic, patchy sensory (pain and temperature perception) loss in my feet, around my ankles - I've had this for 7-8 years, at least (I never tried to get it checked out, so I never got an answer). I've mentioned it to my neuro, but he hasn't had a chance to look at it yet. I could let you know, after I see him in a few weeks, what he tells me. by that time, the results from the skin biopsy he ordered, to check for small-fiber neuropathy, should also be back, so we'll know what type I have - from the QSART test, he's already said that I do have autonomic neuropathy. from what reading I've done about small-fiber neuropathy, I seem to recall, however, that sensory loss may be patchy, though I'm not sure - I can let you know if I remember where I read this.

have you had a sleep study? I know that mood disorders can cause pretty profound sleep disturbance, but maybe there's something else going on, as well? It could be worth looking into, if you have severe sleep disturbance. I did have one recently. I haven't had a chance to go over the results with a doctor yet (I will in a couple of weeks), but the sleep tech strongly implied, in the morning, that he had seen a lot of very weird stuff going on, throughout the night, though I'd always assumed that my sleep was relatively normal, aside from waking up at inopportune hours . I also wasn't sure if this could be relevant to your case, since you only give a brief description, but I wanted to mention this, in case it is relevant - if you only hear voices at night, or even at other times, they could in fact be hypnagogic hallucinations, which may indicate some kind of parasomnia, or possibly something like narcolepsy (which is far more difficult to identify, and far more complex, than the usual stereotype of simply falling asleep at inopportune moments). I know very little about sleep disorders, but the brief description you give made me think about this. I don't actually hear voices, per se, but I do have something resembling brief auditory hallucinations, which sometimes give me pause for a few moments, but always feel "synthetic" enough that I have no difficulty identifying them as such. They almost always occur when I'm waking up, or dozing off. I've never had visual hallucinations or psychosis, but I do have somewhat difficult-to-describe experiences, which resemble dreaming while I'm awake - sort of like watching a movie - which may indicate that my brain, in a respect, is going into REM sleep at times when I'm not actually sleeping. Sometimes sleep disorders can be very difficult to detect, with the person often unaware of the symptoms, some of which may mimic, or worsen those of primary mood disorders. I hope you don't mind that I went into all of this, without knowing other details of your case - if you think any of this could be relevant, though, I'd be happy to give you any other info I have, or you could also PM me about this.

has your doctor tried something like Abilify or Geodon? as far as I remember, they are not really associated with weight gain, usually, and the side effect profiles aren't as bad as for the first-generation antipsychotics. I was diagnosed with bipolar disorder previously (now just with vanilla depression and ADHD), so I know how frustrating the medication merry-go-round can be.

I don't believe so - I think there are different genes involved (the fibrillin-1 gene, in the case of Marfan's, and a bunch of other genes may be involved in EDS - http://ghr.nlm.nih.gov/condition=ehlersdanlossyndrome lists some). some of the symptoms are similar, though.

EDS is autosomal dominant - a person can't be a carrier. if you have it, it will be expressed, and there is a 50% chance of you passing it on to your children. it does express itself differently in people who are affected, though - my mother is hypermobile, and has had many more problems than me with some of the secondary complications of EDS, but has never had a problem with recurrent injuries/subluxations like I have had (she's less hypermobile, as well).

tearose - I was curious, what is a compression pump? What do you use it for?

Radha - where do you live? I went to a medical supply store that I knew sold compression stockings - they took my measurements, and ordered them for me, since they didn't have the particular ones I needed in stock (they were delivered to my home for free, but most stores probably wouldn't have this service). I went to a different store to get an abdominal binder - they asked me for my preferences, and also measured me, and then gave me one in my size. You could google something like "medical supply store", together with your zipcode, and it may come up with something - if you call them, they should tell you if they offer anything like this. I wear Sigvaris compression hose, and I like them a lot. I've also used Jobst, and I've heard good things about Mediven, as well.

I have this - it's very, very similar to what you describe. I feel that it is related to the ANS dysfunction (I don't have a specific diagnosis yet, testing on Friday), as it's often triggered by the same things that trigger my other symptoms (being upright too long, mostly, or too much exertion), and because the same things that help with the ANS symptoms help so significantly, and often immediately, with everything you described - compression stockings/abdominal binder, rapid water ingestion (this is a really big one), lying down for a while, squeezing my leg/abdominal muscles, medication (Florinef). I've had this for so long, at this point, that most of the time, I'm no longer very self-conscious about it, and have found that making some kind of offhand/humorous matter-of-fact excuse (sorry I'm very foggy - I caught a virus/have health problems/didn't get enough sleep, clearly) usually helps - people are often quite understanding and accommodating, as long as they don't have to use their imagination as to what the h*** is going on . It's taken years for me to come to terms with this, and learn how to handle myself when this happens, though.

it may be worth looking into, in that case. I was tentatively diagnosed with EDS III last month, by a geneticist who specializes in connective tissue disorders. I mentioned to the neurologist who diagnosed me, during my first appointment with him, that I was somewhat hypermobile - the fact that I could easily bend both thumbs back, to lay completely flat against my forearms, seemed enough to convince him . Since I also had a history of joint problems, and somewhat stretchy skin, he asked me to get it checked out. this seems to be a fairly good article, describing what may warrant evaluation for EDS: http://www.ncbi.nlm.nih.gov/bookshelf/br.f...e∂=eds3

are you hypermobile (http://www.hypermobility.org/beighton.php), or just very flexible? If you don't have an increased range of motion in several joints, as far as I know, it's probably not EDS, unless you have other symptoms, as well. I score about a 4-5 on the Beighton scale, though I have other joints that are hypermobile (ankles, shoulders). I have other symptoms of EDS, as well, and some history of joint/EDS-like problems in my family. knowing I may have EDS mostly matters to me because I do have problems with my joints - recurrent injuries, subluxations, and so forth - though my symptoms are actually fairly mild, and don't cause me too much trouble, as long as I stay away from most sports . my neurologist did seem to think that it was relevant, however, to figuring out what type of treatment may work better, in my case.

I'm sorry you feel so bad - I sometimes get pain in my legs, but it's not as severe. Have you tried different types of compression hose? If you can't tolerate abdominal compression, maybe you could try thigh-high hose, or 20-30mmHg compression instead of 30-40? If you get it custom-measured at a medical supply store, it is sometimes much more comfortable/effective. You don't need a prescription, but I did request one from my doctor, so my insurance covered it. I found abdominal compression very uncomfortable at first (I wear a binder, as well), during and after eating, and at first had to remove it at those times, but it no longer bothers me - it feels like my body adapted to it after a while. Do you take any medication to help with the pooling? Has your doctor suggested anything?

welcome! POTS is diagnosed based on an increase in heart rate (+30bpm, or over 120bpm), as well as symptoms of orthostatic intolerance, upon standing. Your blood pressure does not have to drop - some doctors actually feel that if your blood pressure drops significantly upon standing, then you don't have POTS. I don't know much about NCS.