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About MomtoGiuliana

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  • Birthday 08/16/1968

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  1. I get the flu shot nearly every year--for about 15 years. I have never noticed a correlation with POTS symptoms. That said I do wonder if some vaccination might have triggered POTS for me. I lived in Africa and prior to going and while there had a variety of vaccinations. It was during that time that I began to notice POTS symptoms (did not know what was going on until severe symptoms occurred 10 yrs later). I had very severe POTS reaction following B12 shots last year. My dr was stumped and felt it was a vasovagal reaction simply to having a shot. Seems really strange to me bc I have had so many other kinds of shots in my life with no reaction like that. I do think that a variety of triggers can bring on POTS, and it is certainly not well understood.
  2. Thank you for sharing. That is great that you are feeling so much better. Hopefully you will continue to see improvements. I have also had recovery. I have had two periods of severe symptoms that were extremely disabling in my 30s and 40s, and both times recovered eventually quite well. I had all the symptoms you describe, as well as severe exhaustion that prevented me from leaving my bed or my home for months. For me, fluids were extremely important, and modest increases in salt intake. IV fluids helped me greatly in my 2nd bout.
  3. There have been several past discussions about this. Here is one: https://www.dinet.org/forums/topic/29728-pots-treatment-center/
  4. So sorry to see this. I have also "hit a wall" several times in my life, due to this condition, and had to take a great deal of sick leave and once had to leave work for nearly a year. I also make more than my self-employed husband does--some years a great deal more. I had short term disability insurance that helped slightly. It's good that you are looking into what options are available but so sorry you are feeling so poorly. Good your doctors are still doing testing, if standard treatments for dysautonomia are not helping. Sometimes it can take awhile, months or more, to recover, even with medications that are appropriate--in my experience and from what I have seen on the forum over the years. Take care.
  5. That is interesting that you mention that your symptoms came on after taking two contraceptive pills. The same thing happened to me in my late 20s. Maybe it was coincidence, however, I seem to be very sensitive to hormonal changes. I also had severe POTS during pregnancy. I was not diagnosed with POTS until age 34 and post partum. Have you talked to a doctor about your concern about a blood clot? I also get symptoms of chest heaviness, which can change with position, and exercise intolerance and lightheadedness. The dry cough is concerning and I hope you can have these symptoms thoroughly checked out.
  6. So sorry you had such severe and scary symptoms. The warm bath water may have contributed to blood pooling. I have had such symptoms and also gone to the ER--when I didn't have a diagnosis, and also a few times after my diagnosis (over the years). When symptoms are severe or something new comes up that is scary, I think it is a normal reaction to consider going to the ER. We can't advise you on the forum about when to go to the ER, except to share our experiences. I would say that if possible you should try to reach your doctor to get a verdict as to when to go to the ER. Although typically for liability reasons they will likely advise that you do so, if you are having symptoms that mimic heart attack, stroke, etc. I know once or twice when I had very severe symptoms my husband called 911 and paramedics checked my vital signs at home. Although I felt dizzy, weak and unstable my oxygen, pulse (lying down) and bp were OK, so I opted to stay home. The tingling you describe I have had as well with events like this. This could be caused by hyperventilation. Did you mention this symptom while at the hospital? It may be helpful to maintain a diary of symptoms. Hope you can rest well tonight.
  7. And I would add that perhaps a third option is that severe symptoms will come and go throughout your life--not sure if that is the same thing as "chronic" exactly. I have had two severe episodes in my life, which caused me to be disabled. Both times, I improved within months to being functional and eventually exercising again. My symptoms are mostly mild, most of the time otherwise.
  8. Yes. It became more severe when I had a relapse last year and was diagnosed with low B12. Taking B12 supplements over months may have improved it, or maybe it is a symptom of POTS. For me it did improve as my other POTS symptoms improved. These days I do experience it, but it's very mild.
  9. I also get a dizzy odd feeling in my head when lying flat, at times. Even if my other POTS symptoms are minimized.
  10. Thank you. And thank you to Edriscoll for all that you do for the forum and the website, and the organization. It's a huge job -- you are the glue that keeps it all together and functioning!
  11. Yes I have been severely fatigued to the point of being bed/couch bound for hours or days or weeks. It can be a symptom of POTS. I do think it can be triggered by overdoing physical activity when in a bad POTS flare.
  12. Patients with POTS may or may not have BP changes. The defining feature of POTS is heart rate increase of 30 bpm on standing. From our website: The criteria for diagnosis of POTS is: (1) a sustained increase in HR of at least 30 bpm within 10 minutes of standing (often with an absolute upright HR ≥ 120bpm); (2) in the absence of sustained orthostatic hypotension (drop in BP > 20/10mm Hg); (3) with symptoms of orthostatic intolerance for at least 6 months. In patients < 19 years of age, there is a higher HR threshold for POTS (increment  ≥40 bpm or absolute uprights HR  ≥ 120 bpm) due to physiological orthostatic tachycardia in adolescents and children (Singer et al., 2012) (Arnold, Ng, Raj, 2018) POTS patients experience a myriad of symptoms, in my experience. My own symptoms have run the gamut and varied over time. We have a list of symptoms that have been reported by various medical journals here: https://www.dinet.org/info/pots/pots-symptoms-diagnosis-and-prognosis-r96/ Severe weakness and exhaustion are symptoms of POTS and I have personally experienced it. It is possible to have POTS and OH.
  13. Probably you know this, but staying very well-hydrated is essential for most of us with dysautonomia. Added salt also generally seems to help many of us. I find this can help me with brain fog. I agree that diet and rest are also important factors.
  14. @JimL b/c of the gastric band, have you been tested for vitamin deficiencies? I was found to be B12 deficient last year (I am a vegetarian but it never occurred to me or my doctor this is a risk factor for low B12--as is generally getting older!). People who have had gastric surgery are also at increased risk from what I read at the time. I had no idea what a toll low B12 can take on your nervous system. I had a severe POTS relapse last year that disabled me for 2 months--it included a lot of digestive problems which I had not had before with POTS. Do you take a B12 supplement? You may want to have your B12 level tested and consider taking supplements anyway even if you are not found officially deficient. B12, from everything I have read, is safe to take in large amounts b/c it is water soluble. Apologies if this has already been discussed elsewhere in the forum with you.
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