Nin

I'm really sorry you're going through so much right now. I also have seizures and I also feel them coming. It came out of the blue a year ago.

Shocking isn't it! To be honest I think you get more joy from your GP. Yeah they are very reluctant to give iv fluids because of infection. Funnny when I came out of hospital last October after having a operation for endometriosis I felt good walking out of there. I said to my mum what must they have given me because my head feels so clear and im not dizzy. Surely that's what I had iv fluids during op. It will be yrs before they offer that here.

Thanks pistol. Loads of good info on here!

Its really is scary when you've tried so much and it's not helping. You think is anything going to help me. Yeah that's the problem with a doctor out of the UK, you can't get the medication. America got way more to offer than the UK. I get the feeling the doctor i seen privately wants to keep my appointments with private care as he could offer to take me on through NHS....more money for him. Basically the neurologist who I seen said the seizures were functional neurological disorder and I don't agree. I've had a eeg and that was negative for epilepsy. So these seizures are non epileptic, but so many different illnesses out there that can cause non epileptic seizures (I.e pots) she didn't test me for anything. The tilt table test i sorted out and it was actually my gp who suggested pots. I was in hospital for 9 days and not one doctor said this could be something called pots....even though I was reacting every time I stood up. I can't believe you've waited 4 yrs to see someone for eds! Just got to keep fighting I suppose and eventually something will work.

Yes syncope and seizure are different. I wonder 🤔 if eating also is triggering the ANS.

Maybe I should send him that link. They get really crappy with you if you try telling them. I think they believe that you can get seizures but after fainting. I don't faint then have a seizure, I just have a seizure. Is that also the case with you pistol were you having just a seizure? Also did you ever get set off by eating food?

Yes I have been on pots UK. This where I found the doctor who diagnosed me. Maybe I should have stuck with him, he was private though and expensive.

What causes this reaction for you? Is it food or a number of things?

Hey pistol Spoke to my pots consultant today and he said pots can't cause seizures! It's so frustrating because it makes you think they don't know enough to help or they don't want to even think well yeah possibly if you haven't got enough blood flow that would happen. Again I suggested mcas and he said no its extremely rare you wouldn't have that. He said its people who have eds have that. It just makes me not want to deal with them (doctots).

I don't know why mcas would cause seizures. I've read a few stories and articles online about mcas causing seizures. They call them pseudosiezures (not sure if thats just in the us) because they are non epileptic. When it happens to me I slurr my speech. Im from the UK and this is a story from our main newspaper of a girl who had seizures https://www.dailymail.co.uk/health/article-5581213/The-woman-eat-rice-vegetables.html

With me either my lips start tingling or my eyes start flickering, then my body starts jerking and then whole body tenses and starts fitting I spoke to a consultant today regarding pots and he said "you can't get seizures from pots" which i know you can! I'm just looking into mcad as I've read you can get them from this and as I reacted to food I thought its worth checking. Its not just seizures, I constantly got a sore throat, I keep getting red spots on my face that come and go, burning legs/arms.

I've been having seizures over a year now. I've just made the discovery that eating peanuts causes me to have a siezure. It happens within 10 mins. I've read online you can have non epileptic seizures from mast cell activation syndrome. I have pots and I know it is common to have mcas with pots. I seem to have these seizures after a hot bath, exercise and walking round too much and certain food. If you do have mcas.....what triggers you? What are your symptoms?

Yeah I suppose they do need to see my average score when I feel rubbish so they know what medication to try. It would have probably been better to have a 24hr monitor

I'm due a telephone consultation to discuss trying some medication to help. But they told me to write my BP down and how I'm feeling. Problem is it changes from lower end and going to the higher end. So if they put me on something to raise BP what if it goes too high. Also my BP don't always mean the same. One day it might be lower end and feel fine and next time its lower I might feel terrible. So for me its not an indicator of my symptoms. I don't know whats making me feel so symptomatic.

Oh this was me back a year ago. I just had a siezure out of the blue. Went to the hospital and the jerking and involuntary movements i just could not stop. Its was frightening! I still get them to this day and its a warning a siezure is coming. They said they are non epileptic. About 5 months after I was diagnosed with pots. Not one doctor has said this is pots related, but I believe it is. I just think its a rare symptom of pots. Another thing I read the other day is mast cell activation syndrome can cause siezures so that's another thing I would like to rule out. I struggle the most with these siezures because I've lost so much freedom because of them. I hadn't had one for 4 months and then the other day over exercised then had a siezures about 5 hrs after!

Has anyone tried sodium chloride and did it help?

Yeah get a digital blood pressure monitor, those wrist ones are inaccurate.

I'm from Wales and unfortunately had to pay private for a tilt table test as I knew I would still be be sat here waiting because of covid. My GP did refer me but they just won't put it as urgent. I paid £750 for tilt test and then consultation afterwards. After that I paid again to speak to Dr Gupta as he is highly recommend and I think he just forgot about me. So I have now just got an appointment through the NHS and a specialist nurse is in contact with me and hopefully going to try new medication. She did say they are not even doing tilt table test now, but obviously I paid to have it already so I've cut that out. To be honest getting a answer how you got it in the 1st place is probably highly unlikely unfortunately. I think we have only 1 place in the UK where they do extra testing and again your GP or a consultant got to refer you. It's such a long drawn out process!

It's just ???? All the time. I'm always questioning why why why. Now I know we just don't have the answers most of the time....it is what it is. I tell myself "you just got to ride the storm" I just hate it when I know the storms coming. I try to stop things happening, but I also have get on with everyday life i.e cooking, cleaning. I was doing really good for about 2 weeks, cleaned the house and then felt rotten since. Acceptance really is hard to accept! But I suppose we got no choice. Keep going like you do!

My eyes are a big big problem. I feel I'm constantly on a boat! I can't seem to focus on anything and if I do I feel like I'm swaying very fast. So looking at my phone, talking to people (making eye contact) I'm struggling with. The lights in the supermarket are terrible also

I'm not sure if blinking helps. I tend to close my eyes and look back at whatever I was focusing on just to rest them and that seems to help.

I did ask her about nystagmus but she said no it doesn't look like nystagmus

This eye problem seems to be a common thing with pots I guess.

Thanks for that! Everything you just said is my homework they gave me after I went for a vestibular function test. Even thou she said it doesn't seem to be coming from my ears (surprising enough both been operated on) she told me to still do the exercises. I hope they don't make me worse

When you do speak to your sisters would you be able to ask the name of the condition? I did have a vestibular function test the other day but not sure if I was in the right place for what is happening. Nothing showed up with that. Nothing worse when something affects you so much and they say no couldn't find anything!