Nin

I've had this metallic taste on and off for yrs. Haven't long been diagnosed with pots so don't know if it's related. Another thing you said about fluid coming out of your ear. I also had fluid coming out of my ear and turned out I had something called cholesteatoma in both ears, it would be highly unlikely you have this. But I would strongly suggest you get your ear checked as fluid shouldn't be coming out. Another thing is CSF leak, again highly unlikely. I've just had a brain MRI and I worry about a cranial CSF leak as the problem with my ears caused my brain to herniate into my one ear as the cholesteatoma grew into the temporal bone. But thinking now maybe this metallic taste has just be a symptom of pots all along and may have had pots for years without knowing. Please do insist to your doctor you want this checked and have them refer you to ent. If you feel something is not right make sure they listen to you

Well that's reassuring as my symptoms sound really close to yours as like I said not many people seem to have siezures as well. All I can do is try and hope for the best! Hopefully sort the medication out soon.

The consultant I seen originally was going to put me on ivabradine but has now said bisoprolol. My resting heart rate is around 60 so I don't know if that's why he changed his mind as originally he said he don't want to put me on beta blockers. I've never taken medication for pots. My main hurdle is I get siezures and feel it's going to be hard to find the right medication. When my siezures were reported my heart rate was going up to 180 so maybe beta blockers will stop it getting that high in the first place. I'm worried about the side effects.

Ah right yes cardiologist etc are usually the ones who don't know a lot. I seen a specialist in pots and he didn't explain anything to me or give any advice. Everything I have learnt has been off here.

See this is the worrying thing like you said even renowned specialist don't understand this and then I'm worried I won't get the right treatment to sort this. I can't see how ivabradine alone will work...but I might be wrong.

Yes it must be white coat syndrome! I'm taking my own readings for 3 mornings to email over so he can see, as the medication ivabradine might not be suitable. It was distressing as it happened 3 times and I thought please just put me back down now. Yes true I suppose being dehydrated made me worse as by that time on a normal day I would have had 2 coffee's and 2 pints of water by then. I really hope ivabradine works and I can start walking again.

I've seen a neurologist before the ttt and she knew then I was having siezures and not once said it could be pots related. I think siezures are more of a uncommon symptom of pots and most neurologist and cardiologist are not aware of this.

My blood pressure when I test at home is on the low side and then with doctors it's higher. They're not seeing the true me. I don't know if it's a adrenaline problem with me but my HR goes through the roof and blood pressure goes from 105/58 at home to 130/78 with doc. Doc said about putting me on ivabradine but I'm worried it's going to drop my blood pressure. I had a tilt table test today and my heart went sky high and had 3 siezures through the test which was like 40 mins standing. My heart again at home don't usually go this high, so I don't know why my body reacted like this as before I went in I wasn't really that nervous. I hadn't had my daily fix of coffee (which seems to help) less water and walked to appointment which done me in beforehand. Do don't know if this triggered something inside. I have siezures at home but when I do too much on my feet, I had a siezure really quick with the ttt...so wondering if its a adrenaline thing like a fight or flight reaction my body felt having this test??

All this is true! I was saying the exact same things to my mum today 😂 It's just not a shock to the system to me as this is how I've been living anyway. I'm just watching people around me falling apart already. One good thing for me is I got my children home with me and don't have to be crying every morning because I can't take them to school anymore.

Thanks pistol. I've learnt a lot from the info you sent

What's excessively vasoconstriction? Do a bath trigger that? Baths make me feel terrible afterwards. I had a siezure the other day after a bath because I kept going and my body was telling I need to lay down. Haven't had a siezure for about 3 months.

No I haven't tried that. I'm not even sure what vasoconstriction or vasodilation is to be honest? Which one of those effect in a hot bath do you know? A bath make me feel terrible after. I even had a siezure after a bath the other day because I felt exhausted after it and pushed myself to keep going.

I find after I drink a cup of coffee in the morning I feel better. I know I wouldn't if I kept drinking throughout the day, I have another one around 3pm and again feel better. I thought coffee would make you feel worse. I'm thinking maybe my problems are more brain related like a leak as caffeine helps, i have had brain trauma off the back of problems with both ears. Hopefully having MRI Saturday but if they don't put dye through I don't think they would see a leak.

I wonder if it's a blood pressure thing.

Yeah last about 30 secs for me.

Yes thats what I was thinking. It must be the lack of blood going to brain.

I decided to walk to my appointment as I don't like going in a wheelchair. After about 4 minutes of walking I tried to talk to my mum, i would say a couple of words and then nothing would come out, I would try again and no words. We just sat in silence for about a minute until I could speak again. Also as I sat I could see stars flashing.

I also twitch and the more active I am the more I twitch, have had this for a year

I feel like I'm on a boat constantly. My head feels like it going back and forth. I always say I feel like the dog with the bobbing head off the Churchill insurance advert (I'm in the UK). It's worse when eating, my head feels really heavy and feel like I'm going to fall forward. I've had major problems with my ears which went to the brain and I always thought it was my ears/brain trauma causing this, but now I'm thinking it could all be pots related. I can't believe the symptoms you can get from pots and times I have thought ms or Parkinson's disease. Brain scan shows no sign or either, it just shows brain Dura herniation, temporal lobe slightly displaced, but neurologist said this wouldn't cause my symptoms.

Thanks pistol...you have a lot of knowledge about dysautonomia!

I get palpitations quite a lot, after eating sometimes, sitting and when I lie down to go asleep. I feel really off Balance with it as well. But when I check my heart rate it's my normal resting heart rate when sat, but it's feels like it's going so fast I expect my heart rate to be high. My symptoms just seem to wax and wane. One minute I think I'm getting better and then I get a day from h***!

Funny you say that someday you can walk without any issues as today I felt like that and thought why is that. What have I done differently

Thanks for all your replys! Is walking usually a big problem for people with pots? The stairs are the worse for me, my heart pounds so fast and I feel like I'm going to drop. This is the hardest thing for me not being able to walk far as I can longer take my children to school as I don't think I will make it to their class. If I push myself I will have a siezure or my legs will just go so weak that I will drop to my knees.

My symptoms are triggered from walking (just around my house) I don't go walking outside as I just can't. So how will a tilt table test pick up if I have pots? I know they're looking for your heart rate to rise to 30 and above, but mine is when I start walking not standing on the spot. What I don't understand is when people get up they don't just stand on the spot, they get up and walk. I suppose I'm worried that I will get a false negative when I do get a tilt table test. Also my Resting heart rate is about 57 so it's on the lower side.

Yes that's makes sense now