Haven't posted on here for a while as life seems to have got in the way. Firstly my partner and I got married 4 weeks ago today, Halloween, which is my favourite day of the year.
We are currently on our way down to UCHL London for 2 days of more tests. My now husbands, still can't get my head around that!!!, symptoms are getting worse, especially tiredness and the extremely low blood pressure readings. The hospital are still treating the condition as Pure Autonomic Failure and I'm hoping, with absolutely everything crossed, that they find nothing else. MSA is very rare but PAF is rarer and we find it very hard without much moral support. The hospital have been fantastic but its the support network that lacks as only 180 people in the country have PAF. X
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Purplegoth
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Hello Purplegoth - so sorry to hear that you feel you are in your own, so please do keep posting here. Everyone here is rooting for everyone else, and there is so much helpful information that is shared, and genuine happiness for any good news such as your recent marriage. Congratulations! And well done for getting down to London -as a carer myself I find the huge responsibility of those sorts of outings incredibly daunting. But well worth doing. On the low blood pressure front, my husband is now on midodrine 3 times a day and watching from the sidelines I think it has made a small difference to his energy levels, dizziness/fainting/seizing up, and he’s not feeling so cold all the time. That small difference is good to have, and I hope you’ll be able to find something that works for your husband.xxxx (ps the msa trust has a good leaflet on managing low blood pressure)
Thank you so much for your reply.My husband is on midodrine, the maximum dose you can have, also fludrocortisone and a injection called octrotide when he eats. We have still seen BP readings as low as 50 over 35!
This isn't his first time in London but yes daunting trips as we have to travel and I have to take time off work. X
I too have not posted for a while. My husband diagnosed with Parkinson’s in 2017 Things have progressed mainly low blood pressure, tiredness feb thought psp then msa then lewy body been to hell n back - now think Parkinson’s dementia. Keep battling on - be that pest to get answers. Midodrine has certainly helped 10mg,10 mg 5mg also at 7am .5 of fludrocortisone which has helped amazingly with b/p.
Also have plenty of salted crips and drink as much fluid as you can on the train or every day 😃 it all helps.
Thank you so much for your reply.My husband is on midodrine, the maximum dose you can have, also fludrocortisone and a injection called octrotide when he eats. We have still seen BP readings as low as 50 over 35!
This isn't his first time in London but yes daunting trips as we have to travel and I have to take time off work. X
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Are we nearing the end?
Update on Alan's progress
A retirement we couldn’t have imagined. 
Breathing/sleep issues 
Dad is left alone on a ward, unable to communicate and we can't accompany him and we've been told no visits allowed. HELP please
