dancer65

Hi ancy i don't think you are complaining these sort of things are frustrating and scary . I am sorry to hear you have had a bad time again keep us updated and sending hugs to get better soon

I know it's not mothers day in us until May but for all those in the UK I hope you had a lovely day where the family spoilt you ?

Thank you it's now a lovely range of colours but has at least stopped throbbing! Thank you for replying I feel as though I am on automatic pilot when I am at my worst and the world around me feels hazy, a weird sensation

I can't offer any words of wisdom but I just wanted to wish you a speedy recovery and so sorry this happened you you Best wishes

Thank you Katy, I think this is something I will pay for in the near future I would be grateful for the lists of tests however no hurry as I am working very low hours at the moment so will have to save again just paid for my forthcoming trip to London to see pots Dr ! Again thank you for taking the time to help me, the members here have offered me more advise than the medical profession this site has kept me sane !

Thank you both for your suggestions and advice. I think I will try the asprin and see what happens . These headaches last at least three days Katy these kind of headaches only started since I crashed 18months ago so maybe they are a kind of migraine I certainly don't function with them (not that I fully function anymore lol) I think I will discuss this when I go to see my POTS Dr in two weeks , my first consultation with a specialist since this all started . I am sorry you have the gene mutation but I found it very intersting that aspirin helps, my Nan died of an anuryrhysim (sorry can't spell ! ) and my uncle has had two one in his brain and one in his lung and was fortunate to survive due to him being a Dr and in the hospital at the time. He really wanted me to be tested but they really don't do that here in the UK he lives in the US. Again thank you both I

The Dr only prescribed cocodermol and no not seen a specialist about it. They are not like my normal migraine where I have to go to bed with these I don't get nausea and though lights bother me with these headaches it doesn't affect me like the migraine does

I have always had a habit of walking into stuff like the dishwasher door, knocking stuff over and even dropping a drink when I am holding it. Lately I seem to be worse I broke my toe this week through total stupidity! This may be just me but I wonder if the lack of concentration spacial awareness is making me worse . Any one else notice this ? My hubby teases how can someone who is trained to be graceful can be so clumsy ?

I have always had trouble going to sleep my mind is too active and I do the worrying thing ! I do know if I take my florinef too late in the morning that will have more of an effect on me . I have made a huge effort to get into sleep hygiene and I am getting better at clearing my mind through breathing techniques and most nights I am now asleep within an hour or so compared to the early hours of the morning. I hope you find a solution

Like many here I get the crashing headache, immense pain in the occipital bones down the neck and through the temple and back of the eyes. These tend to last for a few days whatever pain killers I take co codomol usually , I even have taken ibuprofen which is contraindicated to the florinef Just wondered if others have found anything that helps? Many thanks

On a good day I don't tend to monitor my heart as much but I would say I do have the occasional day when it doesn't raise 30 . However I know I can have a day when I feel lousy and both my Bp and Hr are not as bad as would expect for how I feel . I can not figure out all the time what triggers are . After my TTT my consultant said symptons and the high Hr don't always happen at the same time but it is the autonomic system sending the wrong information. I was told each day can vary in POTS I will be interested what the more experienced members have to say too

I had antibiotics two weeks ago for sinusitis and felt better generally however yesterday I had bad day again rather disappointing ! Sue I wish you a speedy recovery after your operation

Sarah that's great news hope you continue to see improvements

I have ridges all but I know mind is related to my auto immune issues so they never get any better . My cuticles are also damaged and I get white specked in the nails

Hi I still get very frustrated with myself at times at my limitations but I am getting better at accepting it My husband and I spent a couple of weekends sorting out our house to make it easier for me to manage by avoiding bending all the time.Best of all he now knows where everything is ? I had very low BP which is now better since taking florinef .I saw a small Improvement in the first week but took about two months before the side effects stopped backache and headache and had to increase the dose to get BP up and more stable but I am glad i stuck with it as the dizziness is greatly improved , doesn't seem to have helped any other symptoms though. I really try not to have extreme temperature variations as this really affects me and I wear layers which are always on and off like a yo yo . Bedtime is the worst for me I get so hot as soon as I lay down still haven't found a solution that helps Best wishes to you !

Cheap and no chemicals I use bicarbonate vinegar lemons for household cleaning lots of ideas on Pinterest I cook enough veg for three days Al Dante plunge in cold water to stop them over cooking then heat them in the microwave Colour coded washing baskets family trained to empty pockets and sort accordingly ! I put oven racks in dishwAsher regularly saves scrubbing , my arms just don't have the energy to do heavy work any more Sorry to hear you are not working hope you start to feel better soon

Sarah thank you for sharing interesting article

Thank you for posting very interesting

Thanks for you replies ! Is there anything that POtS does not affect lol !! Hope you all having a good day

I had a cold two weeks ago and although I felt feverish my temp was 35.3 to 36.1 . This week I still feel washed out , heavy limbs when I try to do anything and my temp has stayed In the range of 35 to 35 .5 with it dropping to 34.8 yesterday in the afternoon. I have had severe headaches which don't resolve with the painkillers I can take on Florinef. Any thoughts please ?

Hope this continues for you !

Hope you feel better

Hi I am really sorry you are having such a hard time , I can like everyone here relate to your post. I agree with what has been posted in the replies. 18 months ago I thought I would never come to understand or deal with the symptons that change every hour every day, I have read and re read (brain fog ! ) so much info here which helped me realize it wasn't in my head and I wasn't a hypochrrondiac after all I just wanted to say I am finally getting to grips of the unpredictality of each day and learning to understand my body more, I do still get it wrong though! Without this site I am sure I would still be confused frustrated and angry, the encouragement kind words and the wealth of knowledge here I has helped me to be more accepting of this situation. Hugs and best wishes

At my worst a year ago I felt like this most of the time I would say a sentence that didn't make sense at all , did thigs automatically and then wouldn't remember doing it I would Find myself in a room i didn't remember getting there . Now on bad days I feel detched and my husband will tell me you are not feeling well as I repeat myself or I shut down mentally so I am unaware of what's going on around me. He says I look like I am in a trance. I put that down to concentrating so hard on trying to get the symptons under control, well that's my excuse, As I say this has improved with time I hope it does for you too .

I am sorry to hear what you are going through and the waiting game is never easy, every day seems never ending , I can only suggest to try and distract your self doing special things with your children. Sending positive vibes your way