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Everything posted by Nin

  1. Same with me. On beta blockers but all my others symptoms are there - fatigue, brain fog. It's the walking with me that's crippling me. I just can't walk far without everything going nuts. I got to keep sitting down and I just don't want to live like this. Walked from the car the other day to the school gates to pick up my children and my whole body started shaking so had to lie down in the hut (very embarrassed) everyone asking if I'm ok. Someone had to call my dad to come and get me.
  2. Yes I suppose that makes sense. Wish I didn't have to take any of it.
  3. Anyone else get a flare up after contraceptive injection? Its the depo provera I have. I haven't felt right for over 2 weeks now after having it. I was getting good & bad days....but all bad last 2 weeks. I know the depo is progesterone. It seems to happen everytime I have it but not sure if its a coincidence
  4. I haven't had the burning for ages. Realised I was getting this when my body was reacting to something which was toothpaste with sls in it. It wasn't just the burning, it felt like my body was attacking itself. They got no answer for this. It could be something you're coming into contact with
  5. How do you find it helps? Is walking easier? I struggle to walk far, I get so exhausted.
  6. It really is ridiculous that they are making you feel this way. I know I said that saying "thee who feels it knows it" but a doctor should believe you, they shouldn't have to feel it. Another thing is when you've tried everything and it don't work they think you're the problem. Problem is nothing works for some people. They still don't understand pots completely or mcas to this day. You know most docs just think u only feel crap when u stand up and then when you're back down everything is all good. Pots comes with so many symptoms. Your body is just not functioning properly....got sod all about your mental health causing it. Any mental health problems is off the back of pots and sick of feeling like death all the time. Nothing worse than feeling people don't believe you and feeling you have to prove yourself as its impossible. They don't call it the hidden disease for nothing! Been a lot of news articles lately about people developing pots because of covid. Maybe if its a more known disorder docs make takes us more serious
  7. I get this. When I stand up its like a head rush and whooshing in my ears. Happen more when I haven't got my compression socks on. Also when I turn on my left said in bed it don't stop whooshing
  8. Don't he know passing out is to do with pots. He should know this at the very least.
  9. I also had a miscarriage around that time. I took it really bad and had ocd after that. Wonder what they've put on my file. Not fair to bring any of your past up.
  10. I'm so mad he spoke to you like this (not surprised) its just too common 😒 I get what your saying with things on your file, its like they love to see this as they must think this will make my life easy ill blame mental health. You can't even get people to begin to understand how all this effects you. Its like that saying "Thee who knows it feels it" you have to feel what I'm going through to truly understand. Problem is they know a little about a lot, so pots probably only know 2 of the MANY symptoms, mcas 2 of the MANY symptoms. I remember on the phone I said to the neurologist I've had to get around in a wheelchair (not in one now but certainly feel like I need to sometimes) and she went quiet. I know she was thinking I don't need to be in one. Who in their right mind would want to willingly be in a wheelchair age 37 yrs old if they didn't need to! You have to complain. He needs to understand what he said is so wrong.
  11. Doctor said to up the salt tablets to 2 tablets 3 x a day. If this don't work then try fludrocortisone. I find taking just 2 salt tablets dries my lips out and my face. Don't know how I will feel taking all those
  12. I have had major problems with my eyes and balance. They now think its something to do with the semicircular canal. Which wouldn't be a surprise as I've already had surgery in that area. I think I must still have a hole or something there.
  13. Wow 15 yrs! Well thats reassuring. I can only try and give it a go.
  14. I was thinking of trying fludrocortisone/florinef but reading about the side effects it sounds brutal. Also it says do not have any vaccine whilst taking fludrocortisone as it can effect brain and spinal cord. Common side effect heart failure! Its just seems to have a lot of very bad side effects which will make me worse off 😕
  15. My problem is I can't lose weight. I've been trying to lose weight for 5 weeks. I've dropped my calories and exercising (only 10 mins a day). Im a size 12 so not a lot to lose but can't even shift a few pounds
  16. Yeah I'm expecting mine to be negative. Because my lips don't swell, get hives etc I don't think he thinks I could possibly have mcas. Its really weird with me because eating nuts causes me to have seizures and he was kinda scratching his head as why this would happen. Glad you're going in the right direction now.
  17. What test did the immunologist do? Just seen one recently and had tryptase tested. Still waiting for results 7 weeks later! Wasn't reacting at the time so don't know if he's just gonna go off that
  18. I think you're a really strong person as you've been through so much. Just keep riding the storm...better days soon will come. Looks like you get sun, here it rains and rains and rains. Love the lizard pic, I love lizards (I have 3 different types)
  19. So sad that trip done you in like that. So frustrating. But well done for going! That beach looks lovely....shame my beach don't look like that 😕
  20. Its weird but coffee helps me. I feel a mess in the morning and have 2 coffee's and seem to be more functional
  21. I find the slurred speech is when I've worn myself out being on my feet too long and it definitely feels like i haven't got enough blood going to my brain. Im always off balance (I have got probs with my ears mind)
  22. Thats what they diagnosed me with pseudosiezures. They got this wrong in my opinion. Do you still get seizures?
  23. My ears have been a problem for me. I've had 2 major operations on both ears, but wouldn't have thought my eyes are a problem because of my ears. I had a benign tumour in my ear and it ate through the bone that separates the brain and the ear. Im sure I still have a hole or something there as I'm still off balance and I had it repaired 1 yr ago now.
  24. My eyes are just a nightmare for me. I already feel trapped and because of my eyes I can't read, sew or look on my phone. Seen a eye doctor and they think its my ears causing it. If I strain them too much they get really sore under my eyelids. I can't focus, can't look up, can't look down or turn them to the side without getting dizzy.
  25. To be honest I've bought one off ebay for £6! Let's see how it goes. Can't see me tolerating it around my stomach
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