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gackedo

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About gackedo

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    Advanced Member
  • Birthday 11/15/1957

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  • Gender
    Female
  • Location
    Denton, TX

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  1. I just spent some time at altitude and it definitely affected me. They say to stay very hydrated to help with symptoms but I still got winded when I tried to be active.
  2. Smelling things that aren’t there, esp. smoke can be a symptom of a significant neurological issue. I would see a neurologist ASAP.
  3. I hate that low blood sugar feeling. My cardiologist said the jittery feelings and sweats I was experiencing was an adrenaline surge from being upright. But I started checking my sugars and they where anywhere from 39-45! And they happen so quick. Pretty scarey @Heartbroken-I’m guessing you are on Tricare Prime. If you can switch to Tricare Standard and buy a secondary insurance, the cost is about the same but then you are not required to get referrals from your PCP. You can refer yourself. Plus more civilian doctors take Tricare Standard than tricare Prime
  4. I have been diagnosed with a vocal cord dysfunction. For me I have hoarseness, difficulty swallowing and frequent chocking. My ENT examined my vocal cords and said that they bow and do not completely come together when they should. He recommended “filler” injections into my cords but I chose instead to participate in speech therapy. It has helped but has not fixed the problem completely.
  5. Check out Dr Suleman in McKinney. I’ve been seeing him for years. He is great.
  6. Did your doctor evaluate you for the possibility of having Ehlers-Danlos Syndrome. It can be associated with dysautonomia-but it can also cause aortic dissections and you mentioned that is how your dad passed away. Please look up some information about EDS and ask your doctor about it at your next visit. Just to cover all your bases. I get all the eye symptoms as well as well as the red swollen fingers. That’s from venous pooling. I can’t get my rings off anymore. Someday I’m going to have to get them cut off!
  7. I was diagnosed with temporal lobe epilepsy about the same time I was diagnosed with POTS. I went to the neurologist bz of memory loss and missing periods of time and my EEG was abnormal. I take Keppra and Lyrica to prevent any further seizures.
  8. I have neuropathy in my feet for which I was originally prescribed Lyrica. Gradually I increased my dose to 350 mg a day in divided doses my my feet where still so painful. When I was prescribed Cybalta I finally got some relief. Before I go to bed at night I also use a topical essential oil cream that I get from DoTERRA called Deep Blue.
  9. My doctor told me that many people with POTS complain about these symptoms when the body is cranking out extra Norepe to combat orthostatic changes. He did ask me to borrow someone’ps glucometer and check my blood sugar level when I get those symptoms. For me however my glucose levels do drop to the low 40s when I am symptomatic. So now I try to avoid concentrated sugars and I don’t have to much trouble anymore.
  10. It is possible that your heart rate slowed down too much. Did you happen to check your heart rate while you were having that reaction?
  11. I'm 56 and still having symptoms.
  12. Anyone have epilepsy, sphincter of oddi dysfunction or detrusor sphincter dysynergy ( urinary retention)? And who knew that others get shocking, electrical sensations. I get them all the time, and I thought I was the only one!
  13. I have peripheral neuropathy and it feels different in different parts of my body. In my legs it feels like a continuous tingling, pins and needles sensation. In my right arm it feels exactly like ou are describing.
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