Nin

Jyoti I'm thinking the same thing should I have had it done. Im worried I'm not gonna come out of this. I just feel good for nothing. I get sore throats often, but since the vaccine its been everyday since. Hopefully its just a coincidence. I got an appointment in the morning with a immunologist...not looking forward to that. Did u have the Oxford one? I did

It must be a flare as I do feel much worse. I had the covid vaccine a week ago, I hope its not anything to do with that.

I haven't had any other medication other than bisoporol and sodium tablets. I think they need to try me on more to see if I can control my pots. Then see if that helps my fatigue.

Funny CallieAndToby22 said about hot water as I had to stop having a bath because of the heat. I do turn the shower on hot, so think its time to turn down the heat.

The worst part of all this for me is the fatigue. Im so tired of feeling so exhausted just from showering. I have learnt to pace myself. Its just draining and depressing me that I have to live like this at the age of 38.

Is it 2 separate things pots and chronic fatigue syndrome or is the chronic fatigue just part of pots? Its been a particularly hard week for some reason. I always get tired easily but its been unbearable the past week. Hope it passes.

Hi 

I have the burning pain in my thighs, I can go ages with no burning and then back again. Its pretty intense as well. I do get it in my lips but it was toothpaste allergy causing that,  not so bad now I've changed toothpaste. Im also constantly twitching, especially if I do too much. Even if I cough my back starts twitching. 

No, I took a pill called Jakafi at a very high dose starting out, then lower dose, all in all for 3 months. But I have had problems with Brevital an anathestic, it caused seizures in me as well. Do you know why it does this? 

I started having seizures after a 3rd operation for some reason....I still haven't figured out why. what triggers your seizures? Do you have mcas?? 

On 3/1/2021 at 5:44 PM, CallieAndToby22 said:

I can't sleep, taking lots of meds and not helping. 

Also, how do I get blood flow to the brain and retain it? 

If you don't mind I just wanted to ask with your cancer treatment did you have to be put under anaesthetic for anything? I know you have said about having seizures and was wondering if it was anything to do with anaesthetic. That's when I got really bad after a operation 

I get this on my legs. The only time it's not there is when I've been lying down

May just be a coincidence or maybe like yogini said a break between vaccine then exercising. I react bad to exercise sometimes 

Anyone get blotchy legs red/purple blotches everywhere? 

Hey pistol I hope you're doing better now. Scary when something new happens, as you think what is going on. Mine is definitely weakness when I get like that. 

On 2/14/2021 at 11:17 PM, p8d said:

@dancerI believe that in the UK you can rent Parasym to try it out before buying. As far as I know no prescription is required.

Never seen one of these before. Do you know what benefits you can get from this device? I'm in the UK so wouldn't mind looking into this.

Yeah they said she's not taking on any new patients so can't even book an appointment now. They said they'll put me on the waiting list.

6 hours ago, merkat30 said:

At first the secretary said was no appointments then I said I was follow up I had appointment allready she looked was moved without telling me .it so long to wait even before the covid . 

I wouldn't had thought she was that busy! I know their is a guy in London Dr clive Grattan but don't know if he's as good. 

On 12/30/2020 at 12:38 AM, Pistol said:

@Nin 

5 hours ago, merkat30 said:

Rang up see could get my dr croom appointment sooner they put it from march to april now to june 😪😪was only appointment gna help .

Oh no thats a long wait! How long do you reckon I'll wait to get an appointment  with her if I made one now? Is it because of the lockdown?

You have tried everything....so disheartening 😔 

4 hours ago, merkat30 said:

My pots doctor rang has told me there is nothing else they can offer me for my hyper pots we tried it all medication wise .So just emotional support all can give now she said. Feeling very crap about it and as am sure all u felt very alone . Hoping dr croom can help in april .

Problem here is we haven't got what america offers! What have you tried so far? Well my pots doctor keeps telling me to take sodium tablets as he's reluctant to try fludrocortisone! They don't seem to be working. When the pots nurse phoned and I said these salt tablets aren't working, she said awww don't say that. Not being funny but those alone don't work for most. She made me feel like they should work. The only thing that seems to keep me on my feet are these horrible compression stockings. I can't keep wearing these especially in the summer, so I need another solution 

Dr Croom probably has a lot of knowledge about pots also and maybe could suggest something 

11 hours ago, CallieAndToby22 said:

I have terrible bladder problems and I get a lot of UTI's and the dang thing wakes me up throughout the night. It's terrible. I'm sorry. I get it. 

When I got really bad last year the one thing I got was bladder problems. I have to say it was one of the worst out of everything! I could hardly walk as it felt like bone was rubbing on bone (it was really weird) i had 2 lots of antibiotics and it just got better. So yeah I really feel for you.

Yeah hoping to see Dr croom in next few months as I need this checked. Only problem here now we're in lockdown so probably can't get anything done anyway. 

This have been happening to me all week. I go to bed reading on my phone (calm) and then my heart has been pounding, also blood pressure going up. I've had some scary episodes this week. Im come to the realisation the toothpaste is causing it. I'm brushing my teeth, then instantly they start tingling, about 45 mins after heart starts pounding, body heats up, feeling sick and feels like a seizure is coming. The next day I'm just good for nothing. I wake up in the middle making these weird breathing sounds and my heart just pounding. 

Thanks for that! 

I know pistol how can they say by the way your eyes are open or closed what type of seizures you're having. Its hard to find much info with autonomic seizures and especially a video. At least I could see if mine are similar. 

They told you autonomic seizures...did they explain what that is? Are you conscious and can you communicate? I'm conscious when they happen to me, I can't speak fully but can throw a word out. I remember when i 1st started having them my breathing was terrible, but don't seem as bad now when they come. Im just confused with these seizures as I've discovered food is also triggering mine. I need to lay off the nuts as they all seem to be reacting to me. I ate  2 chocolate nuts last night and a cake with a few sprinkles and I'm flat out today. Over doing it also causes seizures for me too. It seems more and more people coming out saying they have seizures with pots. They need to put it up there with the other pots symptoms. Forgot to say mine are non epileptic as I've had a eeg and they say if you close your eyes during a seizure its non epileptic 

Are you seeing a doctor private for mast cell in the UK? It seems through the NHS no one specialises in it. I'll have to go private if I want to see if I have got that. 

I waited a year to see a neurologist in the UK. Have you ever linked your seizures to your mast cell activation syndrome? I have seizures and read mast cell can cause non epileptic seizures. Eating peanuts causes a seizure. Im just so confused with these seizures 

I had covid beginning of December. When the symptoms 1st started. It made me feel extremely weak and thought oh no my pots is getting worse. I was relieved to test positive because I thought I would stay like it. I lost my taste and smell. Im really lucky because my chest was fine. So panic over because I was worried how my body would react

I slurr my speech and its usually when I've over done it. When this happens I usually have a seizure not long after.