persephone

Persephone, Actually Midodrine is the generic and ProAmatine is the brand name. Just wanted to clarify... ~ Meghan <{POST_SNAPBACK}> Glad someone knows! It's such a rarely used drug in the UK- not even in the BNF (bible type compendium for doctors' pharmacists listing all possible drugs used) I've met two doctors in eleven yeares who know what it is/ have heard of it at all! And now you're going to tell me you're from the Uk so I look evens sillier! thanks for clarifying

Isn't one of the side effects of benadryl a tachycardia? I was told to avoid benadryl as it would make my pots much, much worse.

I was interested to read about Mast Cell activation disorders on this website. I mentioned it to one ofthe registrars last week who almost laughed me out of the hospital and told me allergies were completely irrelevant to POTS/VVS. But I know that on days when my nose runs and I'm sneezin all over the joint, my pulse is faster and I get more symptoms. People tried telling me I just had hay fever, but all day, every day of the year, I will now sneeze unless I take an antihistamine (cetirizine at the moment). Sometimes I have to take 3 or 4 a day which I guess is not good for me- but I sneeze and my eyes stream and I just feel icky. Does anyone else have this problem? Is it true that too much histamine in the blood can cause a vasovagal or POTSy response? I'm trying to think laterally cos still no one can give me a reason for WHY pots has happened. do you think some people just never get to find out why they have it?

Take legal action against this muppet. NOW. He must be stopped. Not only has he ignored the diagnoses of SEVERAL other doctors, he has committed NEGLIGENCE and MISCONDUCT by the sounds of things. Don't stand for it. I am pursuing a complaint against a Doctor I encountered in the UK before Christmas with a similar attitude- and even he wasn't as rude as what you've encountered. This is a disgrace. If you were in the UK I would tell you to go straight to the GMC (General Medical Council) to file for him to be struck off. But I don't know what equivalent procedures there are in the states. Who does this guy think he is?!?!?! Like I said in my post on the other thread- the head of the British Mediecal Association told me that doctors like to blame things on psych stuff cos it conceals their lack of knowledge, and provokes a patient into getting distressed, upset and often irrational- which just makes the Doctors think they're right and you're wrong about yourself. Don't give in to it- know that we are all right behind you. Treat this Doctor with the contempt he deserves. I know it's hard- I've been left in floods of tears by over a decade's worth of inept doctors, but as Eleanor Roosevelt said- "People can only upset us with our permission." Don't give this jack *** YOUR permission. Because you deserve better. If he is incompetent, it's his problem, not yours. I'd have thought the eminent autonomic specialists you've seen would be difficult to argue with or refute. Maybe this guy was an escaped psych patient himself? I still wonder if the neuro I saw before Christmas had been let out of some funny farm...he smiled at me, and said "I want you to perform for me...I have a camera- can you stand up and faint now please?" This was the day after my plaster cast was removed from breaking my foot (by fainting on it!)

I thought ProAmitine was just the generic brandname of Midodrine?

Another UK person, hurrah! In response to your question...I was in a wheelchair for just a short while and I found it so frustrating. I try always to exercise and keep walking now, because I found the more I stayed on wheels, the worse I got. It was like a vicious cycle. My orthostatic tolerance went through the floor. I also got told at the National Hospital of Neurology last week that lots of people with POTS are in your position= they become terrified of walking for fear of what might happen. I was like that a lot after I broke my foot. I will never forget the terror and the pain that I felt. but I reached a point where I thought I can either carry on like this living in fear saying what if, or I can just say well, if I fall I fall, at least I'll have tried to move about. And once I did start moving, things got a lot better. Don't get me wrong- some days I have are terrible. But I've not needed wheels since March. I make sure I walk some every day- even if it's just 5 mins round the supermarket. I don't know how you can get over the fear, really. I still get days where I'm frightened. But I try my best to carry on regardless. Because I get warning, I will just actually sit on the pavement if I'm out- regardless of how daft I look. I'd rather do that than stay in all the time and feel afraid. I guess my advice is to say to yourself- right, part of me is scared. But I am going to focus on trying to conquer it. I am going to try and move about on my own. Maybe get a friend to grab your arm if you're on a shaky day? What about a stick? Or a zimmer? At least you will be walking, and that can only be good cos it will increase your orthostatic tolerance? Good luck

I dunno if that's how it works in the states, but every time I go into hospital here it follows the same pattern, or at least it did before I got my diagnosis. The BMA chair told me that they give you 7 days. If after that, they can't find out why you're unwell, they WILL say it's stress. Well, Ernie, guess what--after he told me that, the next 4 times I went to hospital I was told on the SEVENTH DAY "You work very hard at University; do you tihnk you're stressed? What about depression? Does it run in your family? The mind is a powerful organism." And of course, I would feel myself getting riled, worked up, frustrated and upset. I would often break down in tears because I was so disappointed at this attitude being taken yet again. For another Dr breaking my trust. But by getting upset I was just offering ammunition to these bozos! I always try SO hard to stay calm now. It doesn't always work, cos I can feel myself go tense when it happens... Maybe I should meditate, just sit going "oooooommmmmmmmmmmmm" while these people spout garbage!

Just wondered if you had any ideas. I'm currently 68kg (about 148 lbs) and 5'1". I don't LOOK that heavy; I'm a 12-14 UK (8-10 US). But my rheumatologist last week told me I need to get down to 8 tone (about 105 lbs) I don't know what else I can do_ I am a wheat free vegan, meaning that I eat no animal products at all- not even dairy. I don't smoke, I drink extremely rarely. I haven't been able to exercise as much since getting POTSy, but I still do my best. My BMI is 28! where is this COMING from? Anyone else have any ideas what could be causing it? Or tips on how to lose the weight, other than starving myself? I don't know what I'm doing wrong. Has anyone else found they put on weight after the POTS got really bad? People told me before Christmas I looked thinner, that I had lost weight- yet the figure on the scales is the same. I just don't get it- I really don't look that fat!

That's great you're doing so well! Thanks for sharing! I will definitely think abut the B vitamins. A Doctor actually said they might be good for me anyway cos I'm a vegan, so have no 'natural' source of B6 or B12. Keep going, and keep us posted! hugs P

Corina, I sympathise completely- I was told it was "psychological" for ELEVEN years- from when I was a little girl. But you KNOW you are right, and that this guy is wrong. I was told last year that I needed to see a neuropsychiatrist who dealth with unexplained physical symptoms. The neuro I saw said "Can I film you? I want you to perform for me." I am now considering legal action. I'm so proud of you or staying civil and calm- I always find it incredibly difficult! You are NOT ALONE. POTS is REAL. My headmistress from high school, who I'm still in touch wiht, is married to a former chair of the BMA (British Medical Association). He told me once that all doctors will try and blame things that THEY can't explain or don't understand on STRESS olr psychological ISSUES_ partly because it's easier, and partly because by doing that, they provoke you into anger and you fall into their neat little category of 'stressed individual' because you get so frustrated. I share your pain. I'm here for you. don't accept it. And don't go to see this Doctor anymore! Lots of love and hugs in support! -P x x

I think you're right, Gena. The reason my cardio did the head up tilt was because he reckoned it would increase blood volume.

Stick with it! It will be **** for the first couple of weeks if you're anything like me, but it's been wonderful over all. I couldn't walk when I was in hospital in April. Then they tilted my bed, took me OFF midodrine and my bb, and just waited. I was livid at first "how can you just make me wait like this? It's so uncomfortable to sleep at an angle, surely my feet should be up, not my head!"- you know the way we get when we think Doctors are being silly etc... But I persevered and am so glad I did. I walked out of the hospital! I am able to walk some every day now. And if I try and sleep with the bed flat- it is SO not a good idea. I wake up feeling SO poorly and then my pulse is off on one again. If you think about it logically, I guess you're trying to get your body used to not being flat, so that your heart isn't as overworked when you do stand. It definitely worked that way for me. I'm not waying I don't get bad days-I do. I've had days where I've felt really, really ill. But the point is, I seem to be getting more and more days where I am physically better, too. try it- what's the worst that can happen? (as the dr pepper ad always says!) good luck, and keep us posted! A word of warning though- if you have a divan bed, it may not take the weight if you tilt it. I ended up having to get a new electric tilting hospital sytyle bed. Luckily my cardio recommended it and my Occupational Therapist got it for me on the NHS. But I don't know how things work abroad...

Raynauds is really common in people with POTS and NCS. I have it, have done for as long as I can remember! While I'm typing to you know, the third, fourth and fifth fingers of my left hand are going blue, and feel like ice! I tihnk there's a Raynauds and Scleroderma Association in th eUK, but I'm not sure what groups there are in the states. You're definitely not alone! sometimes my legs go absolutely bitter cold below the knee, and nothing will warm them up. If I were you, I would also ask the Doc about Raynaudsm just for an opinion. It's not that unusual. It's pretty common in very young or very old women, but I won't presume you're either, and instead will dig myself out of the hole and tell you that my mum gets it and she is very definitely in between the two!

As a British person, is SSDI like social security disability allowance or benefit? And is an attorney like a llawyer? Normally over here we apply for the stuff ourselves. Or do you have an attorney to sue someone who denied you had a disability? If it's about disability benefit, I'm having problems here at the moment. POTS is not a recognised illness with the benefit agencies in Britain, which is mighty irritating. I am not a student at the moment- my degree officially ended last week...so for now, I'm a zero, zilch, nothing! My income is zero, so are my savings! but I'm too ill to work. Your attorney person, whatever capacity you have hired them under, seems like a very silly and narrowminded individual. do you have to pay for their services? If so, I would tell them to "shove off" and try to find someone else! Maybe someone else on here who lives near ya can recommend someone else? Sorry you're having a rubbishy time of it. Have a hug, and know that when things are this bad, they can ONLY GET BETTER

I wish I could tell you something positive about my experience of stopping my periods, but I can't! Still, maybe if I share it, I can stop someone else suffering like I did They tried to stop my periods when I was 16 for my exams so I would feel better (my periods were very heavy, and used to make me faint even back then. I've always known my faints were period related) I was put on 2 contraceptive pills (birth control pills) a day non stop for 3 months. I then started bleeding in the March, and didn't stop til JULY. Yep, I bled all the way through my exams for over 100 days! And the gynae told me to keep taking the pill because if I stopped, it would get worse, I'd bleed more and end up in hospital. It was the worst time of my life up to that point. I know you're going for an injection which is bound to be more effective, but please PLEASE be careful, and make sure your gyn know what they're doing! Mine quite clearely didn't, as I found out afterwards that if you take the pill like that with no break then a bleed is inevitable. GOOD LUCK! Keep us posted

I used to have a razor sharp brain and plough through books like crisps/chips! But now, well, I don't know if it's just a combination of POTS, all over aching from EDS (atleast I know there IS a physical cause for my aching now) and maybe a bit of depression chucked in for good measure as I'm haunted all the time by the journey I've taken so far- getting diagnosed, pushing so hard for things that I'm entitled to etc... But I can't read anything challenging- I should be cracking on with my reading for Oxford next year. I should be in the position that my mind is the sharpest it's ever been by the time Oxford comes around. But what if it's not? What if this is the way I'm going to live forever? This terrifies me. I don't know what to do. I used to think it would be heaven to have a summer with no exams--well here it is, and I'm NOT a happy bunny. I feel like I've lost my purpose, my identity and I am drifting through the days, getting fuzzier, and dopier. Soon I tihnk I'll lose my mental capacities altogether! I'll be laughed out of Oxford at this rate! So I guess, aside from whingeing, the point of my post it to ask you lovely people what you would recommend to get my mind working agian, how to get rid of this awful aching all over (which nothing really shifts, not even kick *** opioids) and how to get away from this terrible heaving sadness that is making me feel absolutely chained to the floor. I just feel drained.

Miriam you are amazing. That is all.

Go girlie! Fabulous! You've inspired me, that's for sure- I've been worried for yonks that any time I read a paper at a conference I'll just tip over...I've been having nightmares about Oxford dons saying "poor girl, she's like a weeble that wobbled and *DID* fall down!" But if you can stay upright, I can too! Thanks for sharing

Thanks Laura...yes, I *did* read this article just yesterday, thanks! I've just had my catecholamines done this week, but I don't know when I'll get the results. Thanks so much for the helpful pointers though. Have you had the same problem? If I do have the pheo-impossible-to-spell-or-indeed-type-thing, how easy is it to sort out? Thanks in advance, P

Hope you're ok...know you were a bit stressed a few weeks ago. I'm sure I speak for everyone when I say we're all thinking about you and wishing you well. you're not alone. Feel free todrop me a line any time Hugs P x

My cardio at home (non POTS expert, although he has heard of it- which is a BIG thing in the UK!) says this is what he thinks he's seeing when I get an dizzy spell. Anyone else have anything like this? Is this the sort of thing tha tPOTSy people would havean ablation over, or rather, did have an ablaiton for in years past? Any feedback gratefully received! P

Wow! A guy with POTS- I don't think there are too many (on these boards, anyway). I can't actually help with what you're asking, as I'm from the uK, but I hope you get something good sorted soon :-) Keep us posted on how it goes P x x

WOW! I'd love to go there...I'e always dreamed of doing it!

Acidophilus works wonders! Keep taking it. Did you know that they reckon over here in the UK if everyone took acidophilus, incidence if IBS would be decrease by 95%? It should be available on prescription, not just from health food stores for those who can afford it!

Stairs were my first inkling of having POTS- in my final term at St Andrews I stayed with some really nice people who had a 3 storey town house, and they let me have the attic room- I always wanted an attic room and found it really cool in the beginning!! but once I got a virus, I just couldn't do the stairs- I used to faint and convulse ON THE STAIRS! It was terrifying! My landlady used to have to follow me up the stairs to bed in case I fell back- and there were occasions when I did. Luckily I never sustained any real injury from stairs. The one time I broke my foot was standing up to get out of bed one morning- how ironic! But yes, you are DEFINITELY not alone! When I encountered one cardio before Xmas who didn't know about POTS, he said to my parents "Isn't it strange how this always happens to your daughter up the stairs, away from you?"- as if to say could she be nuts/ doing it to herself! But of course, now we know tha tPOTS people just can't do stairs at all! I still get really annoyed when I think of it though. People implying that--how dare they! Honestly, some of these Doctors made me so angry I thought I'd change my name to Vesuvius after the number of massive eruptions they caused!