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My books "You know you have PoTS when..." are bright green

I'm not an expert compared to most on here I'm afraid, but I do get a heavy/full feeling in my abdomen which I reckon is blood pooling. I haven't noticed vasoconstrictors changing this much - I am on midodrine. However, I do think midodrine improved my levels of brain fog/exhaustion. They haven't disappeared, but I can now hold a conversation most days so they have definitely helped me. Infact the first day after I started on them I went from complete continuous exhaustion to fully alert and I wrote a poem there and then! My Dr told me not to be silly because the meds I'm on "don't help with fatigue" but my theory is that if I am exhausted because of my oxygen being screwed up due to stupid heart rate and pooling blood, surely it is no big surprise that sorting the pooling and heart rate will make me feel better Good luck, Hannah

Is there anything you can do to achieve something for yourself? develope in your own ways? creative writing, art-y stuff, something internet based, crafts, design? Since getting badly affected by PoTS I started drawing cartoons, which I then showed to a few people and now I have done 2 cartoon books (one on HMS/EDS and one on PoTS) which I sell to raise awareness and funds for relevant charities. (sold more than 200 in just over 1 year) So other 28 yr olds might have kids or careers, and their own homes (I live with older sister), but I have written 2 books! Your life might run differently, but it is no less valuable. Your path might be unusual, but it is equally precious - perhaps more so because the challenges you face will give you depth of character and perspective that few ever achieve. Hope you find something that you enjoy

And nowwhat, your diagnosing psych seems almost as bad as mine - I had been told 10 minutes before that I had PoTS. She says "do you know if EDS and PoTS cause slurred speech?" Me: I'm not sure. Her: In that case it must be psychological." - yuh! that sounds like a good diagnostic criteria! Muppet.

(NOTE: I am in the UK, so I got all this 'on the NHS' so finance wasn't an issue) Just wanted to add that I have been in almost exactly the same situation. Got diagnosed as psycho - then they realised it was EDS/HMS. Got more symptoms and diagnosed as psychosomatic (on the basis that I wasn't depressed by my EDS/HMS and was still working????) then they realised it was PoTS...but by then the psych had already decided I needed an inpatient stay in a psych ward of about 6-8 weeks. I really didn't know whether to go or not. To put myself through something so hideous just to please Drs, or to walk away and take the flak and have every future Dr question me and tell me I'm in denial? In the end I decided to go for my pre-admission assessment (bear in mind I was already diagnosed as having 'psychosomatic' symptoms. this was aimed at 'treating' said psychosomatic problems). I had great support from friends and family - they all thought it was nonsense, and I got permission off loads of them to use them as references if I needed to. On my Dad's advice I went in and was completely honest. I mean completely. I didn't try and persuade them that they were wrong, I just told them how I felt. Psych: "so do you try doing anything for yourself" Me: [look. pause...]"Oh. You are serious? Of course! just cos my heart rate is off doesn't mean I'm going to voluntarily spend the rest of my life doing nothing! - I just have to pace, do things a little at a time etc. And some stuff I can't do so I do PT and little tasks to work towards the bigger ones." The blank look of complete disbelief at the question seemed to break the ice and my assessors went from "pity and supportive gently gently" expressions to "have a bit of a chat, relax, say things how they are" and repeatedly saying "we really don't think you need to be here!" Psych: "So, how are you feeling?" Me: "Cross and fed up. I feel that every time I start to get a handle on my medical stuff, someone says its all psychological and sets me back again putting pointless hospital stays infront of me when I could be building up my hours at work and getting on with real life! I have just found out I have PoTS as well as EDS and I need time to come to terms with that and work out the best way of handling things. With all due respect the last place I can get my head round physiological issues and how to sort them is a psych ward! By all means, if once my PoTS is under control I remain having symptoms then I might need your input, but right now I think it is nonsense, cos from everything I've been told about PoTS it accounts for everything that isn't EDS." I saw the most senior psych in the hospital and came out leaving her really cross with whoever had said I needed to be an inpatient followed by a report saying I am mentally normal! - I actually have proof that I am sane, which always makes me laugh. For me it was definitely the right decision to go because now I have that completely off my records. I don't have psychosomatic symptoms. Before the appointment I wrote a 6 page letter which I never sent to anyone explaining why I thought I was sane, which really helped me to have the confidence to speak my mind without being defensive. It was the hardest thing I have ever done, but for me it was also the best possible. Good luck, whatever you decide to do.

How about a spray-bottle of water? I find that can really cool me down.

Got my cool vest today, and am now wearing it unfortunately it is now evening so it is cooler anyway, but it feels sooooo nice. I don't think it will miraculously take away all my heat related issues, but if how I feel now is anything to go by I think it will be a big plus in managing my pots. mmmmm cool for the first time in days

I'm another with PoTS and EDS/HMS. and yes, fatigue is one of my major symptoms. I reduced working hours down to 15 hours per week and am now off sick entirely and loosing my job. And yes, the 'get so far then have to lie down and 'shut off' from everything' is very familiar. I will get so exhausted that I can't talk and can barely lift a finger. Like my whole body switches off and I can't even run off stubborness anymore. I have good days and bad days. One thing that is actually really helping me is learning what the little early warning signs are and taking mild evasive action at that stage. Things like: I use a wheelchair 'out and about' due to combination of extremely loose knees and pelvis plus PoTS. Normally I potter about on legs whenever possible. The first slurring-ness I notice (or someone else notices) and I will make sure I don't stand up any more than absolutely necessary for the next little while. Basically I am learning to recognise the major triggers: eating a full meal, standing up, sitting still, talking lots, being too hot or dehydrated. For me, a quick 5 minutes 'time out' for my body at the early signs really helps stave off the major 'wipe-out' crashes and the overall result is being able to do much more. Sorry, I'm not sure I've made any sense cos I am currently too hot, and the freezer isn't big enough to sit in

I have a pair of compression stockings which I got prescribed by the NHS - local nurses should be able to prescribe them and a pair of 'skins' footless compression tights designed for runners/athletes. Have you tried asking your GP for some?

Have you looked at the 'cool vests' thread? Some people have had great results with using them in hot weather - I have one on order and hope it will make the difference between me being a useless flollop for the next 6 months, and actually feeling like a human being! Hopefully...

Well, I live near a main-line station, get the train into London using 'assisted travel' so nice men come and wheel me on and off the train using portable ramps, then I get a Taxi (ignoring the queue cos I'm disabled and can do that!) to the hospital - I don't do buses and my arms aren't good enough, and the underground looks a complete nightmare for wheels. So I guess you could say I cheat! However there is a assisted travel thing for London where you can get people who will actually help you right across London, and who know where is wheelie friendly and where isn't. And it is free! Haven't tried it yet myself though.

Response to "you're in a wheelchair!" ..."You're wearing shoes!"

I'm a wheelie too - but I also have EDS which has made my knees a reliable as a string-puppets'. Even with robot style knee braces. For bad PoTS days my wheelchair is amazing, but I also have to be disciplined and not automatically use it whenever I feel bad - I am determined to be as fit as I possibly can with my conditions. So I have a 'no wheels inside the house' rule to I make sure I walk as much as I can - even though I sometimes end up crawling, and then when I have a massivley wobbly day (like, incidentally, today!) I will use it inside the house but then I have to do more than normal - things like putting the washing on, tidying and the like that I can't cope with on my feet. Which with my wheels I can do on really bad days, which is somewhat ironic but feels absolutely marvellous. It takes a lot of the depressing side out of bad days. For getting out-and-about it has been perfect. Although my PoTS Dr was really not keen on wheelchairs and told me off for using it. I told him he could have my knees, dislocated pelvis and PoTS-y heart then walk across London. Then I would re-consider the wheelchair he hasn't objected since. I think the worry for him was deconditioning making things worse - which I am very aware of and therefore generally use my chair for things I couldn't do otherwise rather than to make things I can do easier, and also do a lot of physio. When out-and-about I will also hop in and out of the chair walking small distances when I can. So I'm a great believer in sensible use of wheel-power

I too have to take snacks with me every time I'm out - to the point that when I'm at church I go out during a hymn half way through and eat a pack of crisps/peanuts then go back in feels really childish, but it's necessary so they can like it or lump it

Sorry work is being so insensitive. It really is hard to get people to understand without them switching off and thinking you are just complaining. My direct colleagues have been amazing - but I think it is partly cos over half the people I work with have close relatives with big medical issues, so they are used to the reality of complex medical conditions. The facilities team however kicked up a massive issue about my department being 'demanding' in asking for a cool office, and even in an official investigation said how I was being 'unreasonable' - it really hurt when all I was asking was to be safe and not collapse - I'd compromised on giving up kitchen access, staff canteen access, ability to make myself tea, ability to visit colleagues in closely linked departments - and then said I was unreasonable! - some people are incapable of seeing what is infront of them. I've also learnt ways of explaining that highlight that it is a life-affecting condition not just mildly annoying. One of my main ones is that when explaining to someone new I will say "I've got PoTS - it means my heart rate screws up really easily and if I don't get it back under control quick enough I go like I've had a stroke - slurred speech, loss of coordination, incoherence etc." At which point they look horrified and start to panic, then I say "Oh don't worry, it isn't life threatening, I'm not having a stroke - it's just dashed inconvenient." Which then makes them think I am some kind of hero to cope with it all and still smile, and I have a better chance of them understanding that if I say I'm not feeling too good then I REALLY mean it and don't mean I'm a little tired! I find it much harder with people I have known from before my symptoms were disabling. Cos my PoTS is EDS related I have 'always had it' to some extent so a number of my long standing friends simply don't get it, and are offended when I don't come to things etc. Or just don't get that I when I say I need a quiet day, I mean a day of complete sofaness that is NOT the same as being lazy and wasting time. I also think that because we often have to push so hard just for a semblance of normality, any comment that suggests we aren't trying is sooooo difficult to take. Rest assured though that there are plenty of people here who do understand. Who do believe. Hannah

I'm another with both, and I don't know what type of PoTS I have, just told that I have it and it is linked to my EDS.

I saw my GP and she has ordered a blood test, but only a normal one but including asking them to measure cortisol levels. I know this isn't an ideal test for reasons others have said, but it is a step in the right direction. hopefully. Her advice was to keep doing as much as I can and not be scared of doing too much. My problem is that the only way I've found out what is too much is to crash. Which then leaves me with lower tolerances than before. So I try and find where my new boudries are - and crash again..etc.. So logic says it isn't a good to keep crashing - not least because if I don't do my physio for even a few days I really notice it with my EDS. She also suggested that maybe my symptoms are cos I am not keeping myself busy enough with things I enjoy (I used to really enjoy my job which I am having to leave cos of discrimination) - which isn't the case, cos I am doing stuff with the governing body for my profession, some voluntary stuff for my church, some math tutoring, and have recently taken up sailing which is fabulous fun. And I enjoy life. I don't feel weak cos I'm depressed, although I do feel a little depressed because my legs keep going to Jelly-stage, which experience tells me is very close to complete collapse and I don't know what to do about it Does anyone have any idea how balance the crashing and life? I'm a natural over-doer who doesn't believe half my symptoms - as in if I say my legs are too wobbly to walk then it isn't that I think they are, but that I have tried repeatedly, consistently failed, tried one more time because I might have imagined it. And now it is half an hour since I last tried, so it might be different now and I'll give it another go. I am familiar with the need to 'pace' but I'm not sure how to do it when I have no idea where my limits are :?

Interesting! I like the idea I wrote a cartoon book on living with PoTS, and this is one of the pages which has a very similar message:

I agree with thankful - take it as meaning you need to make sure you are hydrated enough etc, but don't let it put you off your plans! Everyone has random 'bad days' but it doesn't mean you will stay like it forever and you have to stay at home. Infact even non-pots people can get tachy or faint if dehydrated in warm weather. I was still working when I had quite severe PoTS even though I was practically always what ramakentesh brilliantly calls 'droppy'. Perhaps in your job you will benefit from standing and wiggling frequently, and having a cooling spray incase you get too hot. Look at whether there are any little tweaks to make things easier rather than chuck it all in. All the best, Hannah

Me too. although my favourite subconcious PoTS control fidget seems to be sitting on my feet and rocking sideways?! sometimes on a PoTSie day I have even been known to use my cycling machine at home in an attempt to make my body 'catch up' with my heart rate. If I'm not to fatigued this actually works and I can feel much better all day!

Hi, I frequently have everything go black, but don't faint. It has happened for as long as I remember, often after standing up. And I thought it was completely normal I have almost certainly always had a level of PoTS due to my also undiagnosed EDS. It was like parts of my brain fainted - like the eye-controlling-bit and the body-awareness bit but not other parts of me. I find it fascinating, but as I said it is normal for me so not scary. Although when it happened when I was stood at the top of the stairs it was a little disconcerting! I have actually never fainted in my life. The 'blacking vision' appears to be my 'not-quite faint'. Doesn't mean it is for you though. Hope you find an answer to put your mind at rest. Good luck Hannah

I see my GP tomorrow. Having read about jelly legs sometimes being due to adrenal insufficiency I think it may well be the answer. I still have spaghetti for legs, despite having a not-too-bad PoTS day, and having done very little yesterday - and for the last 5 days. Starting to get a little concerned as with my EDS, exercise is quite literally what holds me together - and it is now nearly a week since I was able to do my physiotherapy. (OK, I'm a little obsessive when it comes to physio but I'm allowed to be!) I really really really don't want any more diagnoses or medical tests though

I'm sorry to hear of your loss.

Thanks everyone. Your posts are really appreciated and it is nice to know that I am not alone I know my pots is at least in part secondary to EDS3, but that doesn't mean I don't have adrenaline issues too. For some reason I am not good at accepting that some things may not be 'cos I'm bendy' - probably because I like to think that I'm healthy You have all given me some food for thought, but most importantly the confidence to talk to a Dr about it. I'm not imagining it. (When I last mentioned this to a dr 'It's like I've run out of adrenaline' he told me not to be ridiculous and diagnosed psychosomatic-ness. Sigh.) Even if all my tests come back negative, that explanation of not enough blood to the brain and the body trying to compensate with epinephrine sounds like it may be me. It is easier to work out how to best help yourself when you have some idea of what is going on Thanks again, - I'll keep you posted, Hannah

Future hope - I wasn't joking either. What I wrote has happened to me in September and I'm still not properly 'recovered'. Having 'been there done that' I am realising that it isn't 'normal' and I need to get a handle on it. Not least because when I am 'focused' I don't recognise the symptoms or register that I am 'over-doing'. I actually did this on my Tilt Table tests too - I was talking relatively coherently with a heart rate of 170ish, saying I was 'OK', then they lay me down again and I relaxed and was completely unable to talk. Just mumble. In hind sight I had felt completely rotten and only part alive at 170bpm, but didn't have the mental capacity to recognise it. I was functioning because I had to. Complicated by the fact that I am scared to be seen as exagerating my symptoms because that was what I was always accused of as a child. When I could relax again and the adrenaline was no longer 'needed' I couldn't talk. As if I needed the 'fight or flight' reaction to make me able to do the basics. Also when I am doing the 'important' thing, it is like all non-essentials shut down. So if I am talking I have no coordination, if the important thing is walking - I cannot talk. If the important thing is talking about one subject - I can't switch to thinking rationally about another subject. It is like I can only run one system. Like a standard 'broadband' mind and body has switched to 'dial up'. I clearly have adrenaline - because it is only when I keep pushing that I completely collapse. And because I can for short times do 'more' than I can normally. I had read quite a few of the adrenal insufficiency on here and it seemed a little different, but I will go and look at the link info. And I have definitely decided to raise it with my GP and see what she thinks.