Freaked

Well, I just spent ages typing out a post about something I need advice on, but it signed me out and I lost all the text Anyway, I haven't been keeping up with research much lately, so I was wondering if there's been any interesting studies I've missed out on?

Thanks for the reply. Good to know the goosebumps can wear off. Just hope I'll be able to put up with it in the meantime.

So recently, after 2.5 years with POTS, I went to see my country's only actual expert in the area, a gerontologist named Professor Lyons in Limerick City. My initial experience with him has been positive; he knew his stuff and he says he'll fill out a disability report. He prescribed me midodrine. He seemed pleasant and intelligent, which is a nice change compared to many of medical experiences since I got sick. Midodrine was suggested for me before, but I was so wary of drugs by that point that I just didn't want to try it. He's started me out with the lowest dose, 2.5mg, and I started taking it today. Have a few questions for anyone who's been on it: I have awful skin crawling and goosebumps with it, which was listed as a common side effect. Did this lessen for any of you who got it? Not gonna be able to put up with it if it continues like this. Do you find you get a withdrawal effect? As in if you stop taking it, are your symptoms worse than baseline, or do they just go back to normal?

https://youtu.be/3IOqRLR3Oug They've been discussing entirely pedestrianising the centre of my city (Dublin), which would make it even harder for me to ever go there for meals or whatever like I do every few months now. I used to be in town every day once. And it just occurred to me that most people have no idea how hard things are when you can't walk much or are in a wheelchair. Or when the mildest amount of heat makes you faint. I miss the city. I miss dancing. I miss the beach. I miss holidays where I can actually do things. I miss being able to drink or smoke occasionally. I miss the mountains and woods. I miss being able to be in control of my career. I try not to give in to self-pity most of the time, but I really do miss being part of the regular world. So the song popped into my head.

Sounds like a dry eye thing, which is something many of us with POTS seem to have major issues with. I've had retinal exams and brain scans due to visual weirdness, and most of the weirdness seems to occur when I'm tired and my eyes are super dry. A really good optician told me my eyes and skin were really short on oil. Only had dry eyes since POTS. Does the smokiness alter if you blink a few times?

I've been absent from this forum for the past few months, cos I went to a pretty low place and am slowly working my way back. But I just wanted to make a post saying that it is possible to improve. I got POTS suddenly in Feb 2013. For about 5 months, it was awful. I felt...there isn't even a word to describe it. For 7 more months, I was still too crippled to leave the house or enjoy the things I used to, to be physical with my boyfriend, or even to have animated conversations with my friends. In Feb 2014, I had a relapse and another month-long fever, and my only doctor abandoned me after admitting me to hospital. He didn't know what to do for me, so I never heard from him again. After that, emotionally, I was a zombie. I had so little hope. Nobody else seemed to have POTS as bad as mine. I didn't know if I would ever get significantly better. But I got a message from a girl on Reddit who told me that after hitting a nadir two years into her illness, a year later she was able to walk across Brooklyn Bridge. It gave me some hope. So I thought I would pass on the favour. A lot of stuff has happened to me in the past few months that I should share on here, but suffice it to say I can go into the city in my chair now. I can do sit-ups. I can walk around shops and stand in queues when I need to. I can even take a flight of stairs without being on all fours. I can play piano, and sit upright in a chair with my feet on the ground for hours. My HR has gone from being commonly 160 just standing up, to being 100-120. 120 is now my walking rate, and I can't tell you how much more manageable that is. I'm no longer breathless for an hour after dinner (touch wood). These things may sound modest, but they've enabled me to enjoy life again a bit. I'm still not where I'd like to be (well again) but I'm hoping to be able to do a course or get a job next year, and that's huge. So to anyone out there in the midst of this condition, feeling like there's no hope, please know that it can get better. Even if you've been sick for a while, even if you've had your hopes and progress dashed before. There are some of us out there who understand what you're going through, and you have our support, and our respect.

I think my weirdest BP was 100/90. This was while my heart was going 170 and I had cold pain going up to my jaw, home alone sitting on the floor, feeling very faint. That was an ambulance day. I've also seen it be things like 115/100 when I'm standing and very symptomatic. Narrow PP is a symptom of low blood volume, which most of us seem to have (going by studies at least), so it doesn't surprise me.

Huh. The rolling over in bed thing happened to me when I first got POTS, with a bad flu. That part went away after the flu though (touch wood). Was horrible.

I've been having trouble with crazy panic attacks for the past few weeks that would have been very unlike my pre-pots self, so just curious.

If I tried to stand in a shower, fun would not be had. I sit on the floor. Even that is a huge trial during flares.

I made the mistake of sitting in the sun for half an hour the other day. I hae to sit on the cool floor inside for like 40 mins afterwards in front of a fan feeling sweaty, weak and shaky. POTS and summer don't mix well.

Thanks for the replies. I seem to very much have hyperpots and lately the adrenaline is driving me pure bananas. My heart was 140-160 for hours today even after the hospital gave me a bunch of valium; I'm pretty sure it was more POTS attack than panic attack but I feel like a whimp. I know my POTS is quite severe as it goes, but it doesn't seem to drive anyone else this crazy. Then again, it didn't drive me this crazy until recently. I just don't know what's going on and I can't figure out how much of these feelings are chemical and how much psychological.

Every time I get a flare, it seems like me and those around me are handling it worse. I feel like a huge burden to those around me. My mind is cracking from feeling so sick and the panic. My degree that I worked so hard for is falling apart at the last minute cos in spite of all the extra time I'm just not up to it right now. When I get quite ill, everything that I normally enjoy just makes me feel sicker. I have no POTS doctor atm and getting psychological help is being a very slow process. My parents despise me and I feel like my mind is beyond saving at this point. I just...I don't know. I went to hospital last night again to say all these things but nobody cares. They're going to leave me until I can't get any lower. I just want to go to sleep for a while. Life is very difficult right now.

That's exactly it, statesof. Crazy mood swings. It's very unlike me normally so that's part of why I'm finding it so disturbing. Don't feel in control of myself, and I'm also getting the weird fluctuations between sweating buckets and not being able to sweat a drop that I get when my POTS gets bad. So it's almost certainly related, but the 'adrenaline swings' as I call them have never affected me mentally this badly before. One thing I have noticed though is that it's a lot worse when I'm feverish and paracetamol is helping me feel more sane.

Thanks for the replies everyone. I'm getting help arranged. Unfortunately the public system might require me to go back to this http://forums.dinet.org/index.php?/topic/24449-horrible-psychiatrist/ guy, which is not an option, but hopefully my parents will pay for privately otherwise. I have some benzos to tide me over until my appointment. This flu still isn't going away so I think my adrenaline is still nuts.

I came down with a flu last week and I still have it, and as usual it's making my POTS way worse. But I'm getting this TERRIBLE panic/adrenaline too. I've been to hospital like three times this week, and my BP has been going low and high (it can even be low during these attacks). The 'attacks' last for hours and hours and are so intense that I just feel like I can't take it or my mind is going to crack. It's really awful, and it feels very 'biological', as in it feels like I just have way too much adrenaline circulating all the time. I'm arranging to see a psychiatrist or get some beta-blockers again. I've been seeing a counseling psychologist for a few months, but she doesn't think my panic issues are entirely mental and that they seem to be very much related to my POTS. It's just really scary to feel like my mind and my mood aren't under my control. I feel completely insane this past week. Has anyone else with POTS felt like this?

Every **** evening. It's not even the volume of food, it's the type. I can handle something liquid or snacky fine, but proper food of any sort is a struggle. Anything above cereal, really. I start getting a bad POTS attack that lasts like an hour. Basically I get short of breath, weak and my BP drops. Then I sweat and my heart speeds up and my BP goes back up, but I'm so full of adrenaline it feels horrible. It almost feels like my heart is struggling. Then once it's over, I feel a lot better for the rest of the evening, cos I needed the food. I know the symptoms are cos blood is diverted to digestion, but I don't know how to get around the symptoms short of barely eating. Anyone else have these symptoms so bad?

They'll know if she had one from the blood tests. It could have been something else though, so keep positive. Whatever's going on, the hospital is the safest place to be.

Have you checked your BP while this is happening?

I understand completely. I have also had docs run batteries of tests that don't normally show abnormalities for autonomic dysfunction, then get rid of me. I have also had docs suggest that even though my TTT showed clear POTS and vasovagal syncope, these are minor 'nuisance' conditions and I either caused them myself by 'lying in bed' (even though they came over me suddenly before I had spent any time inactive), or I'm 'overreacting' to them. I don't know how you're supposed to react when you can't stand for 20 minutes without passing out and frequently have a standing HR of 160, but according to some of them I should be ignoring it. The fact is, they can't treat us very effectively. When they can't treat something, the only other option for lazier doctors is to look for other potential conditions, or tell us that we should be able to deal with things as they are and we must be hysterical somehow. They used to be the same about diabetes, for flip's sake. If they found a reliably effective treamtent for out conditions tomorrow, we would be treated very differently.

I've avoided alcohol since I got POTS cos I know it often makes symptoms worse. But yesterday I had a stomach bug so drank a small amount of brandy. I didn't feel much worse afterwards, but a few hours later, roughly when the alcohol would have been wearing off, I had a textbook panic attack. I get weird adrenaline episodes frequently since I got sick, but they rarely fit the bill of a regular panic attack (ie building quickly, etc). But yesterday I had an episode that built in a few minutes of copious sweating, included blurred vision and made me feel like my mind was going to break from terror for a minute. Then it was over half an hour later. It felt awful. Has anyone else experienced weird reactions to alcohol, or alcohol leaving their systems?

I agree about the cycle thing; ectopic beats and blood pressure spikes can be worse for me at that time of the month, or it seems like it at least.

Thanks for the kind words and good advice. I know I should try not to be so bleak about things; it's just hard when my parents are very negative about my illness and I feel like I've been messing up my relationship with all my health and family drama. I just desperately miss what I was and my old life, I suppose. I'll try to stay hopeful. I think I could come to accept my limitations and keep trying to gradually improve; I'm just not so sure if the people around me will be able to accept that :-/ But I suppose there isn't much I can do about that. Edit: I'm actually in Ireland, not the UK, but the POTS situation here may actually be worse. I would definitely consider saving up to go to the US.

BSmith85, I used to get that limb numbness too. I would wake up with tachycardia and one of my arms dead if it was resting on me, for no reason I could figure out. I can only assume maybe I was hyperventilating in my sleep. It used to happen more when I was on beta-blockers or benzodiazepines.

Both during a flare and on average. During a flare, I get about 2 hours a day where I can do anything other than lie around, if I'm lucky. Most of the time, it's more like 50/50 lately, with early morning and late evening usually being okay and the middle being worse (shortness of breath and sweating are problems atm). Last summer/autumn, I would have whole days where I didn't feel bad unless I pushed myself. How about everyone else?