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Everything posted by TCP

  1. Thanks everyone. I had the Synacthen test to see if my adrenal glands are working OK. Alas I have secondary adrenal insufficiency, so I have to stay on the hydrocortisone tablets and I have an emergency injection kit in case I have infections/flu etc, an accident, surgery or shock etc. It is vital. I am also to wear a Medic Alert bracelet in case of emergencies. It's all a bit of a shock really. I have my MRI in September. The visits to the pituitary/endocrinology clinic will be once or twice yearly for the rest of my life. Thanks to everyone who replied.
  2. Thanks, guys! SonM, yes a bleed into it may well have killed it. If that is the case it may just disappear. I have to have another MRI soon to see what is happening. POTS could be causing the problem as I feel better when lying down. I hope you can find some answers. Wishing you both good health!
  3. Hi I often wake up gasping for breath during the night. I did it this morning after 4 a.m. It can be pretty scary. I opened a window and drank some water and it took me a while to get back to sleep again. I have EDS, POTS and possibly Mast cell issues. I was at one stage stopping breathing whilst asleep and was checked out for sleep apnea. It did settle down after a while thankfully.
  4. As it turned out it was a pituitary tumour and if a pituitary tumour apoplexy hadn't occurred I may well have not known for a long time.
  5. UPDATE: I am to have lifelong blood tests, MRI scans and related checks. I am on Levothyroxine and Hydrocortisone. I had a Synacthen test last week and I have have adrenal insufficiency caused by tumour. It may resolve or not. I am to continue with the meds and next week I have to get an emergency hydrocortisone injection kit, which is vital if I have an adrenal crisis which can be brought on by an accident, an infection, overexertion etc. I will learn how to inject myself so I don't pop my clogs! I may have to get a MedicAlert bracelet or pendant, so doctors know that I need cortisone as
  6. I have lived with travel sickness for many years and it has waxed and waned over time. I do find that if you keep your eyes on the horizon as much as possible (sit in the front seat of a car) it is better. Do look down or try to read. Have a bottle of peppermint oil to sniff. Eat before you travel settles the tum.
  7. I avoid caffeine at all costs, as with having anything related to the nervous system, it stimulates it and makes it buzz. This is especially noticeable with neuropathic pain.
  8. Hello everyone and thanks so much for your replies. I hope all goes well for you. I have had visual issues for quite some time. If your vision is blurry or double it needs checking out. Oh...OK. I hope you get any diagnoses sorted out. Mine is 2.5cm so classed as a macroadenoma with prolactinoma features. I hope you can get something resolved for you. Yes all my symptoms were getting much worse. Hi Sarah. Thank you. The migraines stopped 5 weeks before the pituitary apoplexy which was the big bleed into the tumour. That headache was burni
  9. Mono triggered autonomic dysfunction in me and years later I developed POTS. Mono can trigger many problems and when I had it when I was 23 I was ill and never got back to my previous level of health. Looking back I should have looked after myself more with healthy food, plenty of rest and supplements. I fought it and tried to push myself and that made me feel a lot worse. It could also trigger Mast Cell Activation and that might be worth looking into. I have intolerances/allergies and histamine issues. I hope you feel much better very soon. Rest and gentle exercise. Be kind to yourself x
  10. I have peripheral neuropathy and no diabetes. It came on when POTS did 10 years ago. Some say mine is from the blood pooling or could be small fibre neuropathy. It is intense burning in the skin and deeper nerve pain. My neurologists refused to check for SFN. I am on Nortriptyline and Gabapentin. I keep legs elevated. Cut out all sugars, no cigarettes or alcohol. Keeping calm is vital.
  11. Hello all. Have any of you (along with POTS and EDS) ever experienced a Pituitary Tumour? I have been feeling etc unwell since December with migraines, blurred sight, puffy eyelids and lethargy. Then a couple of weeks ago suffered with a sudden burning headache, extreme blurred vision, CSF leakage into back of nose and severe vomiting. Got to hospital and a CT and MRI discovered a large pituitary tumour and a bleed into it which caused the blinding headache. It is pressing on the optic nerves. So far I am on Hydrocortisone and Levothyroxine. I start treatment to shrink it tomorrow and if t
  12. Hi everyone I don't know if any of you have had similar symptoms. I have POTS, CFS, EDS III, slight scoliosis, IBS and MCAS I was getting really bad migraines of late and they have eased since stopping eating fruit (it created bowel gas and head pains), and the Ivabradine (very low dose). At the same time I was having neck issues such as pain. Also my upper eyelids started to puff up and my eyes started to water. The neck cracks and is very sore and this affects my arms and causes nerve pain and weakness. My fingers feel very sore. My eyes look very strange, my vision is blurred and th
  13. Hi. I only tried Propranolol and I got too hot and flushed all the time. I think it made the Mast Cell Activation worse and since then I have become more intolerant to meds and foods.
  14. I stopped the Ivabradine and fruit....no belly bloating stopping the fruit and as yet NO migraines! PS My GP thought cluster/migraine and gave me a migraine med and also to take 3 Naproxin, anti-inflammatories 3x per day. I took one that evening and had the worse heartburn and indigestion pain ever. I went to bed at midnight and couldn't sleep until 2 pm the next day. I was ill for 5 days will fluid running from my nose and flu-like symptoms, plus many other symptoms.
  15. I use a Fischer stick as I have Ehlers-Danlos and my joints aren't great and also I have neuropathy pretty much everywhere.
  16. Hi. My worst times are sudden wakening with fast heart, nausea, dizziness and sweating. On being upright, I feel unwell, with rapid heart and nausea. I have nausea all morning and it generally eases mid afternoon. My body basically doesn't like me being upright. Yes, get tested and see how you go. Good luck with that!
  17. When my POTS got worse 10 years ago, It started off with red toes and then progressed to deep nerve pain from my spine, down my left leg and into my foot. I also developed neuropathic symptoms, which included numbness, burning, cold/freezing, trickling, sharp shooting pains etc. It then worked its way up my body. The discomfort is worse in my limbs, hands and feet. I also get trickling of freezing water effect down my back, head issues and a squeezing corset feeling around my middle. I do not have MS but neuropathy which means pain and inflammation of my nerves. I am on Nortriptyline and Gabap
  18. Hi I have permanent tachycardia, even when lying down relaxing. It never stays steady for long and is always in the 88-113 bpm when resting and rising to 158 when exerting myself. When I sit quietly it is around 99 bpm and often misses beats and jerks back into action. I have lived with tachycardia for around 30 years and it got worse when the POTS symptoms worsened ten years ago. If it pounds too much, I settle down or lie down, or drink water etc. The cardiologists haven't been that concerned as although the sinus beat is fast, it isn't irregular. I think I have got used to it al
  19. Hi Don I have bladder leakage/full incontinence (and some bowel issues, too). Yes, it fairly common, mainly in diabetics with autonomic dysfunction, have such issues. I don't have diabetes so doctors were not brilliant will dealing with my case. I use incontinence pads and pants. The autonomic neuropathy has caused lung, bladder, bowel and liver problems for me. So far all neurologists have been unhelpful as regard this and the peripheral neuropathy I have. Do you know what is causing your autonomic neuropathy? If it is diabetes for example, if the diabetes is more controlled it
  20. Hi. In my last relationship (we are still friends), my interest in sex did wane after a while, mainly because of the fatigue of the POTS/EDS and other issues. The dysautonomia also affects the lady parts and can change the level of sensation there. Also if I o******d, it made my health symptoms much worse. It was a bit tricky. Hugging was important for both of us and that never waned. Making sure your partner is well enough and if in the right mood is important. We did find that lying in the spoon position was less demanding on the body. I think finding a good position that doesn't cause p
  21. I started on the recumbent bike and floor exercises. I did these for many months and increased the times and types of exercise. My knees began to hurt with the recumbent bike (I have EDS), so I opted for gentler movements and not too much stretching on the joints. I have had to have a break from longer sessions because of migraines, but I hope to pick up again if I can get them under control. Take it easy at first and gradually build up.
  22. Hi Everyone My headaches have been worsening since December and I am now at the point that they look like migraines and cluster headaches. My eyes get pretty puffy and the pain is so intense now, with vice-like pain, with shooting nerves sensations. I have neuropathic pain, so have been on Nortriptyline and Gabapentin for 10 years. I am on a very low dose of Ivabradine (2.5mgs per day, no more as they upset my bowel) for POTS and nothing else. The head pain can go on for days and can fluctuate. Last week I had it for 4 days and then 4 days break and it's been back again since Tuesday. I h
  23. You're not alone, I get very short of breathe even after minimal exertion. I had a lung function test and my lungs had apparently shrunk as compared to previous x-rays. My lung volume was down and I really struggled with the spirometry test.
  24. Hello I was born with Ehlers-Danlos type 3 and I had several knee dislocations early on it life and signs of EDS. Fast forward to 1984 when I got the Epstein Barr Virus which resulted in Glandular Fever. I never recovered from it and the main symptom was extreme fatigue. lethargy and brain fog. Eight years after this I saw information about ME/CFS and it seemed to appear at that time that this was what was wrong with me. I got a diagnosis by a professor of neurology. I believe now that it was in fact autonomic dysfunction possibly triggered by the EBV and surgery. My symptoms waxed
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