Jump to content

Sea otter

Members
  • Posts

    116
  • Joined

  • Last visited

1 Follower

Recent Profile Visitors

597 profile views

Sea otter's Achievements

Enthusiast

Enthusiast (6/14)

  • One Year In Rare
  • One Month Later Rare
  • Collaborator Rare
  • Week One Done Rare
  • Dedicated Rare

Recent Badges

0

Reputation

  1. @snbffgdj77 I am sorry for your struggles with getting proper diagnose. Sometimes tilt test can be false negative. See details in the following video. https://youtu.be/5Iv1PLLHiQo?si=cqrTYchL5vcI1ysr
  2. @EliasGautier a lot of symptoms you mentioned match to POTS symptoms. Here is one good video about POTS symptoms.
  3. @Derek1987 vestibular system is balance system. I have done a lot of ENT tests, tests came ok. So for me this is one of many POTS symptoms. Some people are doing vestibular theraphy - exercises. I have done that also, when I didn't have diagnosis, but it made me feel worse. For some people those exercises are helping. IMO this is for ENT doctors and neurologists.
  4. @Derek1987 Autonomic nervous system regulates also vestibular system. I have some kind of vertigo all the time, I stopped driving from the moment my symptoms started, I have symptoms also when I am sitting. It's hard even as passanger. For a lot of folks sitting + sensory overload + motion sickness are triggers. That's why they have problems with car rides, especially long ones.
  5. @DavidinPhiladelphia I am sorry for your son's struggles. Unfortunately doctors are clueless about my symptoms. They told me it could be POTS related. That's all I know. But I still think there is something else going on. I am hoping they will figure out what's going on with your son.
  6. I know this is individual but I was wondering on what kind of pillow are you sleeping? I had thin anatomic pillow for a long time but since POTS I feel like my body is longing for something higher. I have tried a lot of pillows but didn't find anything yet. I just kinda put thin pillow on my anatomic one and form it like wedge pillow and feel better sleeping on that but my neck is not satisfied. 😊 I was thinking to try wedge pillow.
  7. @MaineDoug I feel your frustration. Sometimes it's rough, both physical and emotional. Unfortunately a lot of people think if you will eat and live healthy, you are supposed to be healthy. But there is no rule. Healthy people don't understand that they are healthy because of God's mercy. Hope today is a little better day for you.
  8. Thanks for reaching out and support.
  9. @Pistol thank you. I also take at first a dose much less than the lowest dose available. Well, for now, according to my doctors, I don't have nothing more to try. My country is unfortunately limited with some medications so I am trying to find ways to get medications from other countries.
  10. I don't react good to meds. I was wondering for how long do you guys try new medication? I have read that some people notice difference immediately after taking some medication or in few days. Is it worth to try some medication for few weeks, even when you feel worser than before and don't feel improvement at all?
  11. Glad you mention this. Because I see so many people telling POTS is not as bad itself. I am aware that combination of POTS and ME must be brutal. But those 2 conditions separated can be brutal too. I was diagnosed with POTS and before that one dr thought I have ME. But symptoms are so similar so I think this is simple POTS, like you also said. It is definitely confusion between POTS and ME.
  12. @Jyoti just few minutes ago I saw you have different scale in US. So mine are negative according to US scale, I have checked. Thank you so much for reaching out and clarify. I was tested also for n-ACHR which came back (slightly) positive, but noone knows why they are positive. 😊 MG was excluded.
  13. @Jyoti I have test results and want to ask you something about it. Can you please check your result, if it says negative? I will send you private message with my test results so you can see. Thank you.
  14. @Pistol I am so sorry. That's extremely frustrating. What's wrong - pretty much everything. When I was in flare lately one family member told me some of my symptoms must be in my head and even thinks that doctors made a mistake and I don't have this condition. Typical gaslighting, in the middle of flare. Also people think you can cure everything these days, like someone has mentioned, especially with positive thinking. It's sad we have to hide how we really feel or don't know what to say - because there is SO MUCH to say.
×
×
  • Create New...