dancer65

Hi everyone welcome !

Thanks will have a go!

Hi I have tried several gluten free recipes for pancakes none of them reep nice pancakes they all are rubbery and I do miss a good blueberry pancake on a Sunday morning ! Any suggestions ? Happy sunday ?

I have a lot of unexplained bruising on my legs when I went for my TTT I had over 30 and some were quite large. The dr saw them and asked for pottasium to be checked but that came back normal I was on florinef at the time , however still got this problem even though I am not taking it anymore and the dr doesn't know why . I Do get pooling in my feet and hands Interested to hear what others have to say

Draven that is really great news so pleased for you, when I finally got my diagnosis I was so relieved finally I could stop doubting my sanity ! Wishing you good luck with finding more answers

I find the more fatigued I feel the harder it is to sleep . I have found meditation and breathing exercises have helped me especially on the nights my heart is pounding in my head. If I still can't sleep I will get up and do something for half an hour and that seems to distract my racing thoughts .

Amazing ? Enjoy you deserve it so pleased to hear you are making such progress

Dizzy girls sorry to hear your daughter still having problems finding a balance with meds. I find it takes me a while in the morning to stabilise myself so water etc etc since being on the midodrine but once I am up and running I feel more with it clearer head, less tachy, and the muscle joint pain although still there is actually bearable I think these improvements are due to the better circulation. I think the florinef was causing headaches / migraines to a certain degree I also started to put on weight with it . Although the florinef helped me in the beginning I felt it had stopped working as well for me , my cardio said that can happen sometimes. ancy thank you for that info I hope you are doing well

Thank you for you reply that info is really helpful. I was on florinef for 18 months it did help in the beginning with BP but now I am off it I actually think I was beginning to have more side effects than I realised . I am in uk and my dr agreed to for fill my cardiologist request for midodrine I am grateful for that !

Yes just as you seem to figure this out another Radom problem seems to appear ! I am pretty sure I read somewhere headaches/pressure can be a cause of fluctuating BP but can't remember where that was! Good luck with your appointment

I juice apples oranges carrots cucumber soft fruit and add half a lemon or lime and root ginger which is antiinflammation. I actually don't add any sweetener as I like a tart taste but add a little pink salt. I drink two litres of water one litre of juice daily.

This use to be a really bad sympton for me the effort of talking made me feel exhausted and dizzy along with the inability to find the right words. Getting my BP up has made a huge difference in its severity for me. I also get migraine headaches starting in the occipital bones and the coat hanger pain however starting midodrine has really help this, from a daily occurrence for two years I now experiencing it as little as once a week. I still have vision problems where everything is blurry and if I and reading it takes ages for my eyes to refocus once I stop Really sorry to hear you having such a hard time getting a diagnosis I would encourage you to keep trying to find a Dr in dysautonomic field , it took many years for me to get diagnoised with numerous hospital stays eventually it was my GP who put the puzzle together when I went with a list if symptons

I am on week five of taking midodrine and seeing small improvements in a number of my symptons ( think it was Katy who said small improvements across the spectrum of symptons make a difference ) and it is the first time in two years I am actually feeling like this may work for me if I can get the dose and timing correct. I am still getting pre syncope attacks a few times a week but that's better than a few times a day! My question is ( excuse my lack of understanding on these matters ! ) if you increase the dose which is what my pots cardio was proposing when I saw him, does the effects last longer? I really see a dip in function after thee hours and have been told to take it every four to six hours. I actually do four or I feel pretty yuk again. I currently take 3x5mg a day and he said on busy days I could take an extra dose which I do and it makes a big difference when I am teaching something I will mention to him as I have to e mail this week so far Bp is getting as high as 100 / 60 very occasionally 110/70 great improvement compared to 60/40 and my fatigue and stamina are improving very slowly . so far no goosebumps or scalp tingling only a burning itchy rash which seems to have calmed down hoping you all having a good week

I think statesof explained it very well ! I often feel my heart pounding especially in bed, it wakes me up in the night but it's not always a fast HR

Hi everyone welcome !

I am sure this a relief for you and I hope you get better soon and can return home best wishes

Like Katy said I think it's normal to be scared I am just sorry you are dealing with this. I am sending good vibes and hugs across the Atlantic ! Please keep us updated will be thinking of you

Hi definatly hang in there? I have had symptons since 21 but only diagnoised less than two years ago I have had some really bad times mainly set off by surgery my low bp causing major problems and then I have had some good times. I always say there is hope I seem to say in my head a lot tomorrow will a better day , actually I have had two so far this week best wishes

Hi Lisa i am sorry you are going through a difficult time, I have found it very difficult to accept the new me and I still struggle not to get frustrated with myself at the lack of ability to do things I use to but I look back at when I first crashed and remind myself of the improvements I have made even if they are small . Having support from your husband is so important , we feel guilty unnecessarily because in fact they love us for who we are not what we are, something my husband reminds me of in my frustrated moments ! I have had some very bad experiences with Drs over the years with different health problems, I stopped going to the Dr fir some time as I was told I was depressed . Eventually circumstances forced me to seek help and although it has been a struggle I think I have found the right pots Dr, time will tell , so I would encourage you to keep searching wishing you all the best

Well done navy blue what an achievement! I think those with chronic illness are some of the mentally strongest people I know . Katy I hear you life seems to demand more organising than ever before a skill thats even more difficult with brain fog !

I am not sure what exercises you are doing but isometric exercises may help where you contract the muscle in a static position so there is no range of movement, done slowly and correctlythey are very strengthening . Another thing to consider is balance between the core muscles so both abs and back muscles are worked evenly there tends to be a tendency to favour the abs ! I have a number of chronic soft tissues problems and find this technique really helpful when I had my hysterectomy they damaged nerves in my back ( complications during surgery) to help strengthen my back and abs I put did pelvic tilts with my hand on my ischium bones pushing my lower back onto them squeezing my tummy muscles , very basic but very effective as you strengthen up you should feel the lower back muscles working against your hands . My POTS Dr thinks I have JHS due to my flexibility and othe symptons but not had official diagnosis yet . My body aches all the time whether I exercise or not so I figure better to be strong and ache than weak and ache Hope you can find something that works for you

My arms feel really weak sometimes they feel as though they have run out of energy! lifting even light things can be difficult especially if it is above my shoulder level, ,

good luck today hope you get some answers

Well that sounds really positive steps forward, so pleased for you!

I am sorry you didn't get the job it can be disheartening but hang in there because there will be a job in the future that suits you I am sure. I am self employed has it downsides but also has had some positive benefits too , I had to cut down my teaching too demanding for me now, we miss the income so I am now setting up another business from home where I will be able to rest as needed. Hope the tests give you some answers in comming months.