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CDNPortGrl

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  1. @Pistol this is helpful, thank you! At the end of the month, I’ll be prescribed something for the type of gastritis I have once the biopsy is analyzed so perhaps that will help. In the meantime I’ll try to drink after eating. That’s interesting about the Zofran. I can see how it helps. I’ll ask my doctor about it.
  2. Hello everyone, I have been struggling to eat for a while and the constant lack of food in my system is making my symptoms worse. Have any of you figured out how to calm the sensation down of feeling uneasy eating? It’s as though it will induce the need to vomit and the throat tightens a bit. It’s quite a nuisance. I’m hoping there’s a supplement that can help. I was taking a valerian based calming supplement but it didn’t do anything so I concluded it wasn’t anxiety related and just another POTS issue. I know we all have a variety of symptoms that cover a large spectrum but I thought I would ask in the event that any of you struggle with this too. Thanks!
  3. Hi @toomanyproblems that’s good to know. I was reading about soldiers in WW1 dropping with POTS and how it was referred to another name back then so I assumed that it was this rather ambiguous ailment that has existed for centuries without a lot of awareness. It’s wonderful to hear that that is not the case. I would love to get to the point where the trigger is identified, so even if it was an injury or an illness, perhaps there is a key ‘change’ in every circumstance that could be addressed - a signal that can be retrained, etc. Rather then always treating the syndrome.
  4. While it’s extremely unfortunate that anyone should ever go through this, it’s promising news that there is more research going into it. I hope that specialists start recognizing it too and not being so hesitant to diagnose it. My brother-in-law’s wife most certainly has dysautonomia but she’s not listening to me and bounces from specialist to specialist being told there’s nothing wrong with her or being recommended antidepressants. Unfortunately at this time, many people have to tell the doctor what their ailment is and then the doctor proves the theory.
  5. Oh wow, this gave me goosebumps to read. It sort of proves my suspicion. Interestingly, you likely had a different shot then I did so I may have gotten POTS no matter what vaccine I took. It’s wonderful that you’ve seen some improvement. I hope it continues for you! I’ve got a rather serious case so I hope to get to a more mild version.
  6. Oh I missed seeing this. Interesting. I was in many ways hoping that more research would go into POTS due to long haulers but perhaps not in that case...
  7. Thank you so much for your response. It helps more then you can imagine. I’m still thinking that this was brought on by the Astra vaccine or a leak from a spur since a bike ride was the last thing I did. Although I did read that Gastro issues can cause it and I have that so it’s quite the large question mark. I’m so sorry to hear that your ordeal has been 20 years. This type of thing really tests us out and what humans are capable of enduring. It’s unfathomable that you have had to face this for so long. You’re an incredible trooper and the fact that you take the time to offer words of encouragement to others, speaks volumes to the kind of person you are. I remain hopeful that with COVID long haulers, a ton of research will go into this ‘finally’ and maybe new methods of improving people’s lives will develop. It seems to be a very much forgotten ailment and no one in the science world is doing much about it...at least from what I’ve learned. If a large enough subset of the population shows POTS like symptoms, it could spur much needed change. Thank you for the breathing tip, I’ll try that!
  8. I have the same collar as you and I actually don’t really feel relief. It even bothers my jaw; however a cheap padded whiplash collar from the local drug mart gives me relief. I’m about to try prolotherapy to deal with my neck issues and see if that helps. Only a few places to my knowledge, do the surgery for CCI and the risks are still high. The one testimony I found online from a young guy, said his POTS went away when he had the surgery. My Flexion and extension x-rays don’t show any issues but it’s not as thorough as a standing MRI.
  9. This is an older post but I wanted to send you virtual hugs. As corny as that may sound, I truly wish I could offer comfort. You are too young to have to be tested in this fashion. I’m in my early 40’s and feel helpless to this sudden and very new setback. I’ve only had POTS for a month and other issues preceding that for a year. It’s very hard and like you, I have to try to manage the depression as I noticed I can’t eat when it creeps in, the sleep is poor and the vicious cycle continues. It strikes me that the loss of your relationship compounded everything. I would feel exactly the same; however, you need to be with someone who’s going to be ok with who you are. A girl I went to school with who has debilitating Fibromyalgia and can’t work, met a wonderful man in 2020. He knows what his life will be like while living with her but loves her to bits anyway. I believe that you will find that person. Hang in there. One way to meet a soul mate is perhaps through a support group of fellow dysautonomia ‘sufferers’. You never know 🙂. As for the Heath issues that go up and down, perhaps these setbacks can either be managed or mentally not as ‘impactful’ if you learn how to meditate. My sister took at least 6 months before it worked for her and it’s been life changing. She’s trying to get me to do it to. I do it before falling asleep and I’m terrible at it because my depression and stress consume me but seeing her, assures me that it will start working and I’ll learn how to observe thoughts rather than allow them to consume me. Consider this as well. IMO POTS is an outcome of the vagus nerve not working correctly. The vagus nerve can be stimulated by positive thinking and many other things such as gurgling water, vibrating the tongue for 20 seconds, etc. So if the vagus nerve is happy, the dysautonomia may calm down as well. 🙂
  10. I would be interested to hear if anyone had success at the Mayo. I’m considering paying insane amounts of money to go there from Canada as I’m quite desperate.
  11. This is an older post but I was curious to know how your doing and if you came to another conclusion? It might be worth exploring if bone Spurs are on the spine - possibly affecting nerves. POTS is a misfire due to the vagus nerve for instance not working correctly. Also, people are often diagnosed with POTS or Fibromyalgia when they have a CSF leak that’s undetected. The thing about that is that typically headaches accompany it. Finally, it might be worth exploring matters such as Craniocervical instability as that can only be detected in a 3T MRI machine or a stand up MRI, or a digital motion x-ray. Sometimes a Flexion/Extension x-ray can show it but I don’t know if it’s as accurate.
  12. Oh boy, this is disheartening to read. I haven’t slept in a month since POTS kicked in. I usually sleep every third day ‘ok’ and the other nights are a broken 3 maybe 4 hours if I’m lucky. I assumed this would pass but it’s not looking so hot judging by what you wrote. Getting to sleep is not too hard as I wear the Cefaly device to calm my brain, I listen to guided meditation and do the breathing thing. Unfortunately I wake on the dot at 2 am and it’s unlikely I sleep again until 6 am. I have to figure that we need to get the meds figured out to control the erratic heart..., Btw, in my last hospital visit I expressed concern about peeing 9 times in an hour and a half. It turns out I had a UTI. Perhaps at times it’s a dysautonomia issue but perhaps not always.
  13. This is great! Thanks for the information 🙂. I will look this user up.
  14. I’m presently still living in the ‘denial’ phase of being diagnosed with POTS, which leads me to do a lot of research on the cause. I feel as though treating the symptoms isn’t really achieving much. Why does the POTS occur and how can that be changed? Is the train of thought I have. So I stumbled across this clinic in Texas called biologix center.It seems to be run by chiropractors which seems a bit ‘eh‘ to me; however if what they wrote is correct, I would like to be open minded. I can’t however, find a single instance of someone having been treated by them with POTS who left a review. That strikes me as odd. Have any of you heard about it or been there?
  15. Interesting observation and answers too! I had vestibular migraines (most of the time no headache) prior to developing POTS. I was in a permanent postdrome phase that never lifted and very rarely had a migraine. I was told I have migraines though because my mother had them. My mother had the standard - lights off, dark room, style migraines; whereas mine were not that at all.
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