Nin

Are you in the US or UK?

I just can't chance getting the booster as any vaccination's seem to make me worse. The flu jab November just gone was the worst.

I felt that way as well. I still do 2 yrs after go through all different emotions

Funny you say that pistol how after a seizure it seems to reset the ans as I feel like that sometimes.

I have been diagnosed with pots for over 2 yrs now and recently antiphospholipid syndrome. I was tested for lupus (which was negative) but positive for antiphospholipid syndrome. I couldn't believe when I looked into it the connection with pots syndrome. One doctor said everyone with pots should be tested for this also. It causes a lot of neurological symptoms which I get. Im just wondering if anyone else has the both and did the meds for antiphospholipid syndrome help with pots symptoms? This condition seems to be very misunderstood just like pots. So another rough ride of finding a doctor who understands what to do

Hi I have pots and been having seizures for over 2 years now. I still can't find anything to stop them. I wear compression socks, drink lots of water etc. I've tried sodium tablets didn't work, Fludrocortisone didn't work and now currently on midodrine but on a low dose and not working. Before I have these seizures I have these weird movements, body twisting, shoulders shrugging, hand and face movements. Then I know a seizure is coming. My BP is low and I just can't get it up (temporarily with a coffee) but when a seizure is coming my BP shoots up. One thing I have tested positive for recently is antiphospholipid syndrome and I was amazed with pots connection and antiphospholipid syndrome. With this condition the blood is too sticky. So yeah makes sense with the blood not able to flow to the brain. They only usually test people for this if they have lupus (i was negative for lupus) lots of neurological symptoms with this so hoping i may finally gets the right help and live a more normal life!

Thank you pistol!!

Well I've decided this is what I'm going to do as no one needs to know my business really. I think I only tell people because when people stop to talk I need to give them the heads up in case I need to go quick because I can longer stand

Yeah I can relate to the airport scenario, everyone was looking at me Like you said when you're bad you are home and no one see's you like that. Wish I would have thought quick enough to say something back. One thing I know having pots will make me a tougher person in the end!

They said my seizures were down to a conversion disorder. That was before I was diagnosed with pots. I don't think that is the case as so many people with pots have seizures. What triggers yours?

Sorry I'm no help with regards to doctors as I'm in the UK. Just wanted to say I take my hat off to you holding down a job with all your struggles. I understand the depression side with this illness because everyday is a struggle. I hope you find a good doctor!

I'm pretty upset today because I was in the shop and seen someone i knew and in conversation I said I haven't been out really anywhere as I struggle with walking. They then turned round to me and said "there's always something wrong with you". I said well its the same thing/problem (pots) its not like I'm saying i got a new set of problems. They have no idea of my struggles, how its changed my life. It just hurt that it was someone I know and made me feel like I moaning for nothing. Because they don't know how terrible I feel just be upright and I've got a firework of symptoms going off as I'm speaking to you but trying to keep everything together. Pots really is a hidden illness! Sorry to rant. But please someone give me some good advice on how to be more head strong and not to care what other people think!

Just makes me wonder if there is more to it like chronic fatigue syndrome as well as pots. I know with cfs you got to be very careful how far you push yourself otherwise you make yourself really ill. It does seem to coexist with pots

If it is PEM that is making you feel so terrible from exercise is it safe to keep going? Or will it cause more harm. I get so exhausted from walking and now have a mobility scooter for long distances. Im just worried I've given up on myself and have a big problem with what other people think of me. Like they might think does she really need a scooter and then I'm back to questioning myself again. I'm just thinking what if pushing myself is making me worse.

Yeah worth a try can't see it being harmful.

Looking to try the revitive circulation machine (the one you put your feet on) are these ok to use if you have pots? Do they even help?

Yeah I'm wondering the same thing for me if its a drop a blood pressure is causing my worst events. I wish I could catch it at the time these things happen. Do you get really bad dizziness most days? It pretty much stands at around 106/61 most days don't know if that's normal or not, don't know whether to even mention it to the doctor.

Yeah with me lots of other things cause these episodes its just food was just another trigger for me as well

Do you think it may be to do with what you're eating? When this happens do you get really hot?? Just wondering as some things I eat i react to can range from 10-60 mins after. Usually my heart starts thumping 1st, I just feel really weird like I'm going to faint and then I start getting hot.

Yeah definitely bp problem (must be when on the low side). The whooshing is the blood pooling, proves it as I said when my compression socks are off it happens more.

Mike0 my blood pressure is practically the same readings as yours. Im just up and down and I'm still trying to figure it out. My feet are constantly like blocks of ice I just can't warm them up. Funny you said about the whooshing as I get that when I stand I always thought it was a problem with my ears. The funny thing is it hardly happens with my compression socks on and now I've taken them off and the whooshing is back.

Thanks for that Mike0

What does drug half life mean? My heart is actually racing now when I get up so its shot up now. Maybe it has worn off.

Just read that bisoporol can stay in the system for 1-2 days after you stop taking. So it must still be in my system I suppose 🤔

Im not on any other meds. I'm not sure if its extended release, I'm on bisoporol. No I don't feel normal still felt rubbish standing etc. My blood pressure was normal. Maybe like you said it may stay in your system.