Treatment Of Hypovolemia Uk Patients

[nichob73]

Hi new member thank you sunfish for help its difficult.. anyone have cognitive problems with their PoTS

I have bad hypovolemia 35% plasma and 33 red cell which was done in Canada. I live in UK so I for the last 4 years

i have had no help. Anyone know any UK docs who would help with IV Saline, epo, vassopressin savvy. Docs nearly killed me more recently. I pass 2 litres of urine in 8 hr without eat or drink. The docs were unable to draw blood from arms, instead were drawing thin air, then pumping saline and still drwaing thin air. Out of the hospital i went with "there is nothing physically wrong with you". I cannot stand up you moron......

Not much help from the National neurology and neurosurgery hospital in UK appears no good for PoTs. For two years i have been telling them i pass more urine and than fluid intake, cannot stop urinating. Have tried IV Salie at a private "underground"doc but at ?130 ($260) i cannot afford it. I also cannot make it to the p[lace. I need it done at home. Anyone know of UK homehelp for infusion. Anyone have infusaport or such..

It helps alot..

Any help would be grateful

Thanks for your help and courage to all.

[goldicedance]

Sorry for your problems. Have you tried DDAVP? That sometimes works to help reduce urinary output. I use it in low dose (pill form) on an as-needed basis. That seems to help.

Lois

[persephone]

I am in the UK and on EPO. Speak to the National as I think they are starting to prescribe it (I got written up while in SCotland)

[corina]

hi nicho,

welcome to the forum. as you will find out, there are more people from the uk around here.

if i remember well, there is doctor mathias in london who is treating dysautonomia patients, so may be he can prescribe the iv's for you. what i found out myself (as my docs won't do the iv's also after they asked me if i was able to drink ) is, that drinking the sportsdrink aquarius helps me keeping fluids into my body (i've tried other brands as well, but this one is the best for me).

hope this helps a bit,

take care,

corina

oh, and btw, i'm really struggling with cognitive issues which, i think, are caused by dysautonomia (pots)

[Tanzanite]

Uk here too. Are you on florinef? I had the same problem and since starting Florinef, fluids and salt it's much better. Not cured but better.

[flop]

Hi, I'm in the UK too.

On a couple of occasions I have had IV saline when I was really dehydrated and had low BP with severe symptoms. I have a copy of a letter from my cardiologist saying that in thoses situations I should be given IV fluids.

On a day to day basis I just drink plenty of cold fluids, take slow sodium tablets and fludrocortisone. This has helped to increase my circulating blood volume and decrease my symptoms.

Prof Mathias is the dysautonomia expert in the UK, he is based in London at the Neurovascular Medicine Unit at St Mary's Hospital. Your local doctor should be able to refer you to him. I'm waiting for an appointment with his team myself.

Flop

[nichob73]

Hellow everone thank for your responses and help. Just got out of NHNeurolgy today on Sat. It was pretty bad. Ben under a well known doctor in the UK for 1.5 years and not much help. Will not treat with IV saline, EPO, vassopressin etc, just left in worse condition than went in, very dehydrated they did basically nothiong just let me pee for 4 days can absorb the water. Been tellling him for 1.5 years, will not prescribe salt tablets or patassium etc, said they would kill me?!, his treatment is florinef, midodrine, beta b, if that does no work you are generally buggered. i have tried to tell him for 1.5 years that i am no better, the florinef made me urinate more and because i have not improved he sent in a therapist. After 10 mins i managed to get out of him that Dr. XYZ believs i am clincially depressed, ( a reason why drugs not helping) after 15 mins he was out and he said you are no way clincially depressed. Trust abandoned i feel

I do not feel he is worth the money, he does not listen to you, always prevents you talking so you dont ask questions and you only see him for 10 mins in hospital in a five day stay. Also the docs come in like noahs arc in pairs as i told them i was not happy. The doc will not prescribe anything off-label.

Anyone with help on the IV saline anywhere in UK as it helps so much, Anyother docs? Where can you get EPO in scotland? Who prescribes DDVAP in UK

Florinef makes me urinate more but taking fluid via IV and florinef helped but drinking wtare does not do anything,

Thaks for help but i am stuck in bed and house 95% of time. its a pain.

Anyone help would be good

[nichob73]

I am in the UK and on EPO. Speak to the National as I think they are starting to prescribe it (I got written up while in SCotland)

Thanks for help fellow memeber- Do you know where in Scotland will help?