Jump to content


  • Content Count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About Conrad_hemsley

  • Rank

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. I've had exactly this. It caused anxiety and random adrenaline rushes. It forced me to stop exercising altogether - since then I've been trying to build up my physical condition by slowly increasing steps.
  2. Hi all, Recently I've been trying out Mestinon. I am very sensitive to meds, and experienced some side effects so it took me 5 weeks to go up to 50mg per day. From 40mg upwards the side effects became too much so I quit - cold turkey, as my doctor had advised. Later I learned many people wean it off which given my sensitivity and strong reaction would probably have been a better idea. Anyways, shortly after quitting I experienced increased dizziness, which was bearable. However, after about 4 days since quitting I started getting sudden anxiety/adrenaline rushes during the ni
  3. Thanks for your replies! @Julyrose at what dose did you start noticing the benefits?
  4. Hi all, Started building up Mestinon about 4 weeks ago. Am taking 40mg per day right now and tomorrow upping to 50mg. I'm increasing the dosage very slowly since I'm experiencing a lot of (uncommon) side effects. I've been thinking about quitting because I don't feel any better on it, probably only worse. However I want to be 100% sure it's not for me given the amount of people who experience great benefits from it. Hence, my question is: at what dosage have you all started to feel benefits (and what benefits), so that I can estimate at what point I can be positive it won't do anythi
  5. @Delta, thanks for your reply, I would indeed watch out with raising your feet for the same reason as @bombsh3llsays. I’ve also done this for a short while when it was absolutely necessary but tried to limit it as much as possible. @bombsh3ll, thanks for your reply, that’s unfortunate. Wow, what a story! I do indeed go to the toilet at home with the door open when I feel lightheaded for this reason, guess I’m not doing it for nothing!
  6. Hi all, It’s known that raising the head of our bed would help the kidneys to retain fluid, thereby potentially enhancing blood volume and improving symptoms. My question is, would this also work if the bed is raised only from the middle upwards, I.e. when you have an electrically adjustable bed? Theoretically I’d assume he’s since the kidneys are then also raised but I’m not sure. Thanks!
  7. @CarolS, have been reading this topic, thanks so much for all the info you provide. i too have POTS and (suspected but pretty sure) intracranial hypertension. This theory about the brain lowering blood volume because of the hypertension sounds very interesting. just one question: did the lymph drainage you describe help relieving the intracranial hypertension or did it just help other symptoms?
  8. Thanks @Delta and @Pistol for the tip, will talk to my doc about it. @bombsh3ll, I have indeed been gradually increasing it, but I suspect way too aggressively, I have done a lot of bodybuilding in my life and thus have much difficulty pacing myself, I want to do more than the time before every time, etc. I was literally gasping for air after exercising and perhaps that wasn’t that good of an approach! I’m definitely not going to give it up, when I just started I was feeling really well. I will take it a LOT easier though. No fever here, have upset GI indeed (bloating and excess
  9. Hi all, Male, 28 here, POTS since 2 years ago, bed bound for the last year. Quite a severe case, only able to sit upright for eating and toilet. I’m dealing with a really tough situation right now and would love your help. About 2 months ago I started exercising in bed. I hadn’t done any exercise before while having pots. It went quite well, I didn’t get tired at all, so gradually increased the intensity over 7 weeks, up to the point where I was able to do multiple exercises with resistance bands, planking, etc. I didn’t feel any relapses or increase in symptoms. One morning, c.
  10. All, Male, 28 here. Have had pots for 2 years, the last year of which bedbound. In the past couple of months things have been going downhill rapidly. i keep on getting severe adrenaline storms, some of which last for multiple days, where I am extremely wired, high heart rate, can’t sit still, no sleep, etc. The thing is, about 5 days after these storms I am getting a huge relapse, where my OI is worsening very much. Lately, this has gotten bad to the point where I’m now not able to get out of bed, barely able to sit upright, not able to have a pillow under my head, legs raised under
  11. Thanks @JimL, have indeed been trusting that for the last couple of weeks:)
  12. Thanks Leann, I have looked into MCAS previously l, but figured I didn’t have it because I don’t have diarrhea or constipation or other bowel issues. I do have continuous allergy issues leading to chronic sinusitis though, could that have anything to do with MCAS? I agree, I’m leaning towards just going with what my doctor prescribes. He is currently thinking about either fludrocortisine, desmopressine or mestinon. Thanks for the kind words! Thanks for your advice - I do not have the hyper type of POTS though. Will look into those a blockers in any case. Thanks!
  13. Dear @Pistol, thanks so much for your quick reply. I am seeing a cardiologist who specialises in POTS and ME/CFS. He is one of the only people who deals with these conditions in my country (Netherlands). I did inform him this morning but he’s saying the reason I’m worsening is because I’m doing too much - but I’m not doing anything, it’s just that from the position where I’m in (being bedbound 24/7) even the small things are already giving me relapses: I am quite sure this relapse is because I had to do two 20-minute phone calls last week with my health insurer which is apparently already too
  14. Hi all, I have POTS for almost 2 years now, have been bed bound for about a year. In the last 2 months things have been going significantly worse, very little ability to even sit upright, constant lightheadedness, often unable to have a pillow under my head. Now, last night I woke up having a major attack, becoming super hot, extremely dizzy, shaking, heart rate going up to the 170s. Ended up calling the emergency number but they only did some tests. I have had this only once before. Since I usually get very bad relapses after adrenaline rushes, I am afraid how this is going to turn
  • Create New...