bombsh3ll

On 8/16/2017 at 2:16 PM, Lavanderbloom said:

Oh they wouldnt give me a wheelchair i have buy one of ebay . 

I know it's appalling. I've bought my own too, it is a G-lite pro. It is lightweight and not too expensive and better quality than the NHS ones but you're right we shouldn't have to pay.  The sad thing is if you've smoked, drank or eaten yourself half to death the NHS falls over itself to help. I hate being so bitter about the organisation I worked my whole life in but it's true. 

Hello, I'm a fellow UK POTS patient, I live in Scotland. I traveled to Newcastle to see Professor Newton for diagnosis but as I don't live in England that clinic wouldn't provide ongoing care so I am left with no care or treatment at all. I am trying to get a referral to the NHS autonomic clinic in London but funding issues make this difficult if you don't have an address/GP in England. I am a GP myself so have been fortunate to be able to try all applicable meds myself however none have helped - fludrocortisone was more vasoconstricting than volume enhancing for me so net effect same or even lower blood volume. I really wish we could get IV saline in the UK - if anyone has managed this I would love to know where and how!!!

I had mild bulimia in my mid teens with a mild relapse in my mid 20's. I developed POTS at 34, sudden onset. For me, I don't believe the two are connected. I had a massive postpartum haemorrhage after my daughter's birth 14 months before the onset of POTS, with a 20 unit blood transfusion, & my onset of POTS symptoms was triggered by blowing extremely hard to blow up a balloon and becoming syncopal.  I think either or both of these are more likely to be related but have no way of knowing. I think if the POTS develops during or soon after an eating disorder there may be a causal relationship eg poor nutrition low blood volume/body weight but equally it could just be that both eating disorders and POTS preferentially affect younger females.

Sorry if this is something your husband has already tried, but I've had terrible acid reflux all my adult life long before POTS and I take omeprazole 20mg which keeps it away. I live in the UK so this drug may go by a different name in the US. I mix 1.5 teaspoons of sea salt in 1.5 litres of water 7 diluting juice and drink throughout the morning, and another half teaspoon in the same in the afternoon. Drinking my salt this way I hardly taste it, get it in gradually and with the omeprazole I still don't get heartburn. I would definitely recommend trying omeprazole and mixing sea salt in a nice tasting drink. I'd hate the idea of swallowing salt pills. 

Cycling on my recumbent bike is also the only exercise I tolerate, I can't exercise upright. 

By the way I tried fludrocortisone (unfortunately it didn't help me and also caused headaches and other problems related to sympathetic excess so I stopped taking this), but it did give me the worst stomach pain when I first took it although I had been in hospital and missed my omeprazole. I didn't have any further heartburn whilst taking both, so I would suggest your husband should definitely get a prescription for an acid suppressing medication if trying fludrocortisone. 

I've been arguing my case with my family for years now that the more intelligent you are, the more sensitive to noise and light (sunglasses and earplugs are my best friends). I have always been this way even before dysautonomia!

I'm a new member here but a long time reader, and I'm so sorry you've been through so much. I developed OI/POTS nearly 3 years ago and before that my blood pressure had been low/normal. Since becoming ill it has been high (yet I am still presyncopal most of the time unless I do things that would normally raise BP like elevating my legs) When I had a tilt test it went up to 170 over around 114 when tilted up then gradually came back to it's baseline although I felt I was going to pass out. Earlier this year I went to A&E because it was 223/120  -at the same time feeling unwell with headache and presyncope. 

This is contrary to what a lot of people would think, but I actually think my BP goes high the more hypovolaemic I am, and that when my bood volume increases, sympathetic activation switches off and BP comes down. There are some papers online by Dr Bell a retired ME doctor which talk about this. I can't take florinef as that seems to increase sympathetic overactivity and cause headaches, but hydration and desmopressin help me. 

I wonder if your BP is going high because you are also dehydrated and not getting enough fluid in, so your sympathetic system is in overdrive? I do hope things turn around for you.

B x