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Nin

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About Nin

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  1. I just bought a diary, I will start writing. I think I need to learn to accept my condition, but I just can't. Maybe I will one day. I think if you learn to accept, the bad day's won't feel so bad. Then like you said enjoy the good days. No problem here with insect bites....it's pretty cold at the moment 😟 Well I did speak to Dr Gupta after so hopefully when I do get more medication I will feel a lot better. Thank you 😊
  2. Just wondering if anyone can answer this. I had 4 decent days (hardly any symptoms) and then the past two days have been terrible! How can that happen....what changes in the body to make you feel so ill again. The good days I didn't over do things. Is it because the ANS decides to just start dysfuntioning again. I just feel like I can't even stand today. Pots is so debilitating I still can't get my head round it all.
  3. Yes I agree with you there, you need to treat the person and the symptoms. I was kinda panicking because I thought with hyper pots it's vasodilation you need to combat and midodrine helps with vasconstriction. I'll try it at least as it's worth a try. How do you get tested for hyper pots? What type of doctor does this?
  4. Just wondering how midodrine works for anyone who has hyper pots? I'm a bit worried about what Medication I will be on as I'm sure I have hyper pots. I will be on ivabradine, midodrine and mestinon. I was told even thou they have sub types of pots it's all treated the same really.
  5. The weather is pretty mild here at the moment so not too hot. I think I need a diary and at least I can go back over the days these siezures happened and compare. It's unfortunate here in the UK don't offer IV fluids. Thanks for your reply 😊
  6. Yeah I thought that was the case that they would be good for all types. I thought I better check in case I was advised not to. I've had a terrible day with these siezures. I get a warning one is coming and today it even happened lying down in bed. It has never happened lying down. When I felt something was coming I took my hr/bp and both were sky high (bearing in mind I'm on beta blockers). That's why I wanted to check about the stockings because I know you said about too much vasconstriction with hpots and you need vasodilation, so was worried stockings would cause vasconstriction. What would cause too much vasconstriction for me? I was just having a normal day watching TV not stressed. I was eating peanuts (which I'm not allergic) I started to feel nauseous and it all just tumbled from there. Was really lazy with the drinking water today, I drank 2 pints less than I normally would.
  7. I've been advised to wear compression stockings but wondering if it is ok to wear if you have Hypet pots? Don't hyper type pots cause too much constriction in the blood vessels and do these stockings constrict the blood vessels?? I'm not really sure what these stockings do and if they can help with hyper pots. Any advice would be appreciated
  8. It's stands for functional neurological disorder. You get neurological problems but structurally your brain looks ok.
  9. Before I was diagnosed with pots the neurologist said I might have fnd. I haven't seen her since to say I've been diagnosed with pots. Is it common to have both? I get a lot of twitching, tremors in my left leg/arm and especially siezures upon walkkng. I have heard people say they get this with pots. Makes you wonder how many people with pots get misdiagnosed with fnd. My brain in frazzled now because I'm thinking could it be both. I'm still getting siezures everytime I go for a walk even thou I'm on beta blockers, I am upping the dose so I'll see if that helps. If this don't work I'm going to find another doc as my current one is not being very helpful
  10. How do compression socks help? Do they help blood flow? Where is the best place to buy these?
  11. Probably would help if I knew which type of pots I have. When I asked the doctor he said just the normal type. I'm definitely going to make an appointment with Dr Gupta, I suppose I'll have to wait for everything to go back to normal. Thanks again for your good advice!
  12. when I look at my legs when they feel funny I have like this blue/purple web type appearance on my legs, my feet feel freezing but my legs feel hot. So I'm really not sure which one is actually happening, vasconstriction or widening. I've seen a neurologist but didn't mention my eyes. My balance I did. I've had problems with my both ears which resulted in surgery near brain and wasn't right since. Neurologist knows all this, did examination but offered no further testing. She knows I struggle upon standing and just said at the time about tilt table test. I don't know what's pots and what's been caused from the trauma anymore. Because pots got so many symptoms it's hard to know When you said people with pots need to avoid vasodilation....what things will cause this? So when we stand up naturally our blood vessels should tighten is that right and in pots they don't? Sorry I just can't get my head round it all still. My brain just don't seem to work anymore 😔 I feel like I can't absorb information like I should.
  13. Yes you're are right beta blockers alone is not going to fix this. The specialist I seen seemed adamant that I'll be on my way with beta blockers and then I lost hope again when I felt no change. I will email him and say this is not working and if I feel he can't help I will see Dr Gupta. I have watched his video's on YouTube and he does seem very knowledgeable. He seems like a real nice guy. When I get these siezures coming on or when I can't even speak my legs are really hot, heavy and start to shake. I think to myself surely this is to do with vasconstriction as it feels like my blood is just not flowing. What medication should they give me for that? I'm pretty confident if they can give me medicine to help vasconstriction it's going to help a lot. Did you or do you have any problems with being off balance? I'm off balance everyday like on a boat. My eyes are really bad too, I struggle looking at my phone and anything I need them to focus on make me so much more off balance.
  14. Just wondering if anyone has ever had any help from Dr Gupta in the UK for pots? What was your experience? I'm currently on bisoprolol and I just don't feel any different. It's brought my heart rate down and blood pressure ok but still struggling to stand for long and still getting all my symptoms. My main one is siezures when on my feet too long or from walking I get them. I was really hoping beta blockers would help but they're not stopping the siezures. Nobody seems to know anything about siezures and pots but hoping Dr Gupta will understand what's going on.
  15. 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
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