Freaked

If you'll excuse me a bit of TMI, I need to tell someone about the straw that broke the camel's back. I'm 22, live at home but was staying with my boyfriend at his college for a few days, mostly so me and my parents could have a break from each other (they have not adapted very well to me being sick, and I'm very disabled and symptomatic so I take quite a toll on them). Well me and my boyfriend were in bed earlier and I let things go further than normal cos I'd been feeling okay this morning. Big mistake. Right after orgasm, this sick feeling spread from my chest to my stomach and my heart took off to 150. POTS attack, I can only assume, if I believe that i really don't have anything else cardiac going on. I was shaking for an hour afterwards and still feel bad. I can't do this anymore. Every time I even have to walk around to get ready to leave the house, it makes me sweat and vomit, as well as the tachycardia. I get fevers every day sometimes and spend hours feeling like I'm being smothered, and this is just sitting in bed. Walking to the bathroom can be like a marathon. With eating all the salt, I'm better than I was, but it isn't enough. It's been a year and my resumé has a huge hole in it. My boyfriend has a sexually inactive permanently sick girlfriend who can do nothing except watch comedies and eat dinner very slowly, and cries a lot. I can't get too animated talking with my friends, and can't go anywhere with them. Everything I try to do just makes me feel so spectacularly ill that I'm afraid to try again. The meds I've tried have just made me worse, with my BP getting either too high or too low. I'm doing exercises, but though they helped before, I'm not seeing much improvement this time round. I can't do this for another year; I already get flashbacks to bad episodes and I don't want to lose my mind entirely. This thing has taken almost everything I used to enjoy and turned them into ordeals. If I haven't started to see definite improvements in two weeks, I'm ringing my specialist and telling him I need serious help. I don't know what he'll be able to do, but I can't just sit in a bed suffering all the time. A year is enough.

I get very bad dry eyes since POTS but don't seem to have Sjorgens either. But I do think POTS effects it.

I was basically allergic to it, or horribly intolerant anyway. Took it for two days at a low dose; my heart wouldn't go below 100 and my BP was 150/110. Awful. But my reaction was pretty unusual.

Thanks for the replies! Yeah Alison a lot of my anxiety does stem from the fact that I don't have a doc who knows about my condition and I can talk to easily. My specialist is good but he's the other side of the city and I only see him every few months. The symptom list is a good idea looneymoon; I might try that.

I'll donate for sure. My parents have spent thousands on doctors for me over the past year for very little progress; any potential treatment is worth a bit more.

I have pretty severe POTS, as in after a year I still can't walk much or sit with my feet on the ground for more than like half an hour, so i just can't really leave the house. I've had so many scary episodes and weird stuff since this all started, and one weird thing from before it started, that I've become quite the hypochondriac. Every now and then I'll come across a disease that seems to 'tie it all together' and start getting afraid that I'm about to have a heart attack or aneurysm and drop dead. For example at the moment it's Takayasu's Arteritis (I've had low fevers, weird vision stuff, migraines, etc) and I'm slightly afraid that my stomach pains are (not kidding) an aortic aneurysm. I used to be the complete opposite of a hypochondriac, but I'm just so sick all the time now that I'm constantly reminded about my worries. I mean I just had two skipped beats in a row and now I'm afraid to move. And the longer it goes between tests, the more I think 'but maybe it was too early to pick anything up then and it's gotten worse'. Does anyone else suffer from this? How do you not worry about your health with all these weird symptoms and unanswered questions?

Yeah I get it; it's one of the things that landed me in hospital a few times with heart fears. But one of the times my hand actually turned freezing and blotchy, so there was some significant inflammation there. I realised my pain seemed to be from serious compression and knots in the shoulder region; for some reason the area seemed to become very tense when I wasn't feeling well. If I managed to relax it at all, it would crack *very* badly in comparison to the other side. People with anxiety and depression often have left arm pain as well; it seems to be a region that becomes sore when there are a lot of stress hormones in the body, which there always are with POTS. I mean I can't 100% guarantee it isn't cardiac (for either of us), but there are other possibilities.

This kind of thing happens to me sometimes too, even when I seem to be doing everything right. The fact that your BP is often still low though indicates that might be the problem; if I was you I would try upping the salt a bit. Btw I get the inflamed upper body cartilage and muscle too; it coincided exactly with when I got sick. No idea what it is either.

I've been having some pretty nasty sweating, shakiness and hyperventilation in the mornings until I eat something. This could just be POTS, but I thought I'd buy a blood sugar monitor to check. It says that, for the readings, lower than 2.8 is low and higher than 16.6 is high. I just took mine and it was 4.6 (it's evening here). Just wondering what readings others typically get, for fasting and not fasting?

Chaos, there are three main reasons, as far as I can tell, that docs resort to psychiatric diagnoses so quickly. 1, they see a lot of anxious people, and other people with mental or emotional difficulties. A lot of panic attacks end up in the ER. 2, They want to give some type of diagnosis, because they want to write something down on your discharge sheet. 'Anxiety' is nice and vague and easy to write. They don't want you saying they're not doing their jobs and didn't try to find out what was wrong with you. 3, as a senior in psychology, I can tell you that most medical doctors simply don't know that much about psychiatric disorders - they haven't studied them in great detail. They will often attribute things to anxiety or depression that simply aren't anxiety or depression symptoms; they have this idea that psychological problems can cause any and all physical symptoms, which simply isn't true. If they get a psych opinion, normally the psych will give you a better evaluation. If however the psych is a specialist in psychosomatic illness, as I was unlucky enough to get, and Justina Pelletier, some of them get very stubborn about this diagnosis because their reputation and the reputation of their particular area is on the line. Somatoform disorder is a more difficult disorder than anxiety to disprove, because it can be claimed to cause a lot of things, up to and including actual blindness. However it is more common that when docs misdiagnose psychiatric illness, a psychologist or psychiatrist will pick it up if the person is exhibiting symptoms such as exercise intolerance, which is very rarely caused by anxiety.

It can be so tough sometimes; I know what it's like to have to rush through a test at college for fear of falling out of your seat :-/ I tried to see a psychologist for the umpteenth time yesterday and couldn't because her office was up two flights of stairs with no lift. I made it up the first (not on all fours like at home), but would have had to lie down on the ground after the second. Being physically unable to seek emotional help is...not a nice feeling. I've been randomly symptomatic this week too, even though I was doing everything right for a change and expected to be feeling better. Feeling sweaty and getting flushing even just sitting in bed. I have to call my boyfriend a lot just to hear a comforting voice. And my eye has been weird for 6 weeks for some reason. Often I feel more like an 82 year-old than a 22 year-old. Have your pity party and don't feel bad about it; we go through a lot.

I strongly suspect hypovolemia, but even regular POTS is considered a 'rare and weird' diagnosis in Ireland, so you can forget about subtypes. I did ask a doc to order an aldosterone test, but then I was too lazy to go into hospital and do it since no doc would have been very interested in the results anyway. I don't think my issue is blood pooling, at least.

With irregular beats, my time of the month seems to make them worse. Also, sometimes the better I'm doing, the more skips I'll get. That's probably because you normally feel them worse and iirc get them more when your hr is slower.

Hi, targs66; I get the laughter thing as well. Some of my favourite comedians have left me very worn out :-/ Have you tried passionflower? It used to work well for me and studies have found it to be pretty good, but because the side effects of these things aren't so known, I got scared it caused this odd eye thing i got. But it may not have been related at all.

Great article. And I predict that the new, contraversial DSM 5 diagnostic criteria for somatoform disorder will cause problems for those with dysautonomia, and we might see more awful cases like Justina Pelletier's in Boston. As a former victim of the somatoform label and a scary psychiatrist (http://forums.dinet.org/index.php?/topic/24449-horrible-psychiatrist/), i think if I lived there I think I would picket that hospital until they freed her.

Hi, lejones1, yeah I get exactly the same thing with the engaging conversations! When my friends are over and we're talking animatedly, I start getting symptomatic, and it's really horrible cos I love talking with them. Sometimes POTS is just cruel and unusual. Yeah I need to try meditating again.

Yes, I've had 'attacks' with most of those symptoms. Sometimes loads of them together, sometimes only a few. Mine tend to occur if i haven't eaten enough or if i've pushed myself too far physically, but sometimes they seem to come out of nowhere. They are most definitely a part of POTS and dysautonomia. I assume you have docs that have tested your heart, endocrine system and neurological activity, because obviously those can be symptoms of serious conditions. But yeah, 'POTS attacks' are a term many of us use for them. Fluctuating BP and adrenaline levels are mostly responsible.

I'm trying to finish my degree atm (was supposed to finish last year but got sick) and I seem to have no stress tolerance at all. I seem to have hyperpots (no test where i'm from), and I very quickly find when I try to work on things that my heart is thumping and I'm sweating and nauseous. And the thing is it isn't just negative stress that does this to me; if I get too pepped up listening to a fast song or watching something good or even, well, with my boyfriend, I start feeling unwell. I've been dealing with this for a year and it's been pretty icky, but now I'm trying to do stuff that's actually important and I'm finding it almost impossible. I'm hopefully seeing a psychologist tomorrow, but I really don't know if that will help. Benzodiazepines presumably would, in terms of keeping me completely calm at all times, but that's hardly a sustainable solution, and how exactly would I go about explaining that to my GP who doesn't know anything about POTS? Has anyone had this problem, and did anything help? I know low stress tolerance is a POTS symptom, but mine seems to be pretty extreme.

Well, I've never been pregnant, but the only consolation I can offer is that you might be in the worst of it now. Hormonal craziness (which is always bad for dysautonomia) tends to ease off after the first trimester. Other than that: hugs. And I know it's not easy helping other people with their problems when you're feeling bad yourself.

That article doesn't appear to cite any sources; it appears to be someone's own theory? They are correct in most of the symptoms they attribute to panic, and that they are certainly autonomic symptoms. However most of the time this wouldn't be classed as dysautonomia, seeing as these symptoms are a direct consequence of anxiety stimulating the sympathetic nervous system. Dysautonomia normally means autonomic dysfunction that isn't a direct consequence of, say, anxiety or dehydration or anything like that. It's either a consequence of a permanent underlying condition (like EDS) or idiopathic. There's no evidence, for instance, that something like POTS can be caused by anxiety. Anxiety, unless you're maybe severely hyperventilating at the time, doesn't impact your body's ability to stand or exercise.

I've had POTS for about a year now and I'm still very bad. Basically I can't even sit with my feet on the ground in a chair for more than half an hour without getting symptomatic (which for me means pounding heart and sweating at first). But I've also had problems with exertional jaw/chest pain all my life that have been looked into but not explained. And obviously since the POTS started I've had some scary episodes. I've not had a good time with meds thus far so I'm trying exercise again (lying down or sittting down). But I find that I get so scared that I feel breathless almost before I start. My heartrate obviously climbs very quickly atm and I just find it very uncomfortable; I can't shake the fear that I'm going to give myself a heart attack or at least trigger a scary episode or something. Anyone have any tips?

It does sound very much like POTS. You're not crazy. I hope you get the answers and help you deserve.

So for the last month I've been having a pretty bad time due to scary vision issues. I started getting this black spot in the lower outer corner of my left eye, mostly when I stretched or bent over or whatever. Went for an ophthalmic exam and apparently my retina looked fine. They suggested it might be vascular, by which they apparently meant migraine (I'm 22 btw). Then the following day I started getting this prominent bloodvessel in that part of my eye that just keeps growing. About two weeks ago, the dark spot changed to flashes or sometimes to a dark spot with a bright outline. Now it comes on mostly when my head is bent to the left or when I'm leaning up in bed, but it doesn't always go away instantly anymore. Also about two weeks ago, my eyes started getting very dry, stingy, light-sensitive and bloodshot. My head and face have been very tender and intermittently numb with all this (I can still feel the area if I touch it though, touch wood). I have started getting other visual disturbances such as pinprick flashes and blue spots. I've had two migraines this month, but both only lasted a few hours and the vision stuff wasn't any worse those days. My GP (PCP) told me to go back to the eye hospital and they told me to go back to the GP since my retina was okay. A neurosurgeon i haven't met was meant to do a follow-up scan on me for a 1.3cm pineal cyst in August, at the hospital's (where they conducted the initial MRI) suggestion. I never heard anything about it, but I decided to leave it with the assumed knowledge that if I became symptomatic, they would order one pronto. Well, I contacted them a month ago, and no idea when I'll be getting a scan. They guy's secretaries suggested I email him (which I did, no response) because they'd been asking him repeatedly to order it and for some unknown reason he just won't. This is a private hospital. I went to an optometrist yesterday who said my eyes were extremely inflamed and dry for some reason, particularly the left, and that was probably what was causing the vision problems. But I didn't think dry eye was supposed to produce symptoms like this? I don't know what to do and i'm afraid of losing my sight or having a stroke or something. Has anyone else with dry or inflamed eyes had similar problems? Or has anyone experienced similar problems at all?

That's very interesting; I've considered taking taurine too. I'm a vegetarian so I may well be low on it. What brand are you taking? Did you get it online or in a store?

Sorry, this is long, but it's been a very tough day and I'm not sure anyone else will quite understand my frustration. I've been having very frequent visual problems and neurological stuff the past month and it's been stopping me exercising. It's taken me a while to get started with it anyway cos I've always gotten these fairly severe jaw/chest pains when I run that have come on easier with POTS. I did start over the summer and it helped, but this was before I had been diagnosed properly or had any help, and I started getting bad skipped beats that made me stop. I got sick last February, had my TTT in August and, after faring very badly on beta blockers and florinef, my symptoms are still very severe. So this morning my mom comes in and demands that I get right out of bed (normally I have to eat something first or it's...unpleasant). Her reasoning was that my dad's friend's mother had been in a nursing home and started getting vision problems, therefore my vision problems were from deconditioning and the solution was that I needed to walk around more from now on. I get mad and explain to her for the ten thousandth time that 'walking around' does very little to help POTS except make you feel bad, and most of your excercise at first needs to be supine. Well I got called a 'disgusting *****' and told 'everyone knows you're ******* crazy'. She called POTS a 'lifestyle choice'. So this evening my dad informs me he found a website that says anxiety can cause low blood pressure. Now I should point out that when I got sick it was pretty sudden. I'd been getting viruses for months and feeling quite easily puffed out, but the heartrate problems only noticeably began with this very bad flu. They started right at the beginning of it when I was being very active, so deconditioning is not really a possibility. During the virus my heart was bananas, and it got better afterwards but just never went back to normal. So instead during the argument my parents claimed that I had some sort of viral heart thing at first and then the same symptoms became deconditioning and anxiety. I have low blood pressure even when I'm asleep, and anxiety is only supposed to cause low blood pressure (rarely) through hyperventilation. Also, I was on benzos for months with this, and while they certainly made me calm, they didn't make standing one bit easier. They only say these horrible things when they're in a bad mood, because when they grudgingly admit I'm sick they think I 'should be doing more to help my condition' and I'm 'not handling it normally'. That i've 'lied down under it' or that i was 'never normal anyway'. They think everyone else with POTS must be able to do more than me (they think everyone on these forums are 'freaks' so they don't take any examples of people who had really hard times seriously). What can I say to make them understand? I've never seen this side of them before. I was an insufferable 'child genius', never had any major problems (unless insomnia and being kind of sickly count) and was three months from finishing my psychology degree when I got ill. My friends and boyfriend have started acting funny to them; they think it's cos I've been badmouthing them but really it's cos they see how they treat me when they're here. And I do appreciate that this has been very hard and expensive for them, taking care of me, but it seems like they *want* everything to be my fault so they have someone to blame. They're intelligent people and while they've always been impatient, I never would have believed they could be so obtuse and *cruel*. It's making me feel very low. They're my only family and they think so badly of me now. I sort of think if this is how my parents see me, I must really be awful Is there anything that might help them to see from my point of view? Has anyone had similar problems with family?