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MamaTrain

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About MamaTrain

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    Advanced Member
  • Birthday 08/29/1970

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  • Gender
    Female
  • Location
    Oregon

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  1. Hi Vepa! I’ve had these epeisodes happen to me and they are really weird & scary! My husband calls them my Parkinson’s episodes as I shake and twitch and can’t consciously stop it. I haven’t had one in a very long time but I remember they would be triggered by me feeling like I was too cold. I would fee like I had been hit by a truck when they were over!
  2. I’ve wondered about this too. I once had someone who was really into it rub peppermint oil on my neck & temples for a headache I was complaining of. I had an episode like 15 mins later. Thought it was just me but then a few months later I had a really strong peppermint tea and had the same thing happen! I am also one of the weird ones who have an episode from vitamin E oil! LOL!
  3. Are you in or right before your cycle? That makes a huge difference in a lot of people’s symptoms or the intensity of those symptoms! Hope you feel better!
  4. I have the Apple watch and it does great for HR but doesn’t do BP or pulse OX. I use a separate BP (arm cuff) and pulse OX. I have taken video/photo with my phone of my readings to document what they were. The HR watches are such a great tool...they weren’t around when I was first sick in 2008. It would of costs hundreds of dollars to get 24 hour HR monitoring! Hope you get a formal diagnosis soon. You know something is not right in your body and you have to keep pushing on til you get an accurate DX and treatment! Best wishes to you!
  5. I got my shipment last week and I have yet to drink an entire packet. I was apprehensive about the B vitamins as I lean towards HYPER-POTS so stimulants, including B vitamins, can make me feel bad. I wanted to just drink a little bit at a time and see how I felt. I am struggling with the taste! It’s like smelling the inside of a multivitamin bottle every time you drink a sip! I plan on mixing it with some Pedialyte and trying that. I’ll post again if I can get an entire one down!
  6. So sorry for your loss! I can say from my own grief experience it can really mess with your wellness. I am 8 years into my POTS life and I am very functional now but I still worry I'm going to go back "there" and be in constant episode mode like when I first got sick. I've had some times when I thought oh Lord please no but they came and went. I am in menopause now and it's been a little challenging but I believe it's only temporary as I go through the change. I pray you will feel more like what you had been and this is a short lived set back!
  7. Great info MM! I have read that some forms of magnesium are better for the side effect of diarrhea than other forms. Cant remember which one they said is better so check it out!
  8. FutureHope- It did say something about the use of MSM for IC so it's funny you said that! I started researching it because I read that MSM was used as part of natural treatment plan for acne. I thought how does it help acne and when I read that is allows more water to move through cells and more toxins to be released it made me think that maybe it would aid in the dehydration factor. Then I read further that it allows cortisol to work more effectively. Since I am having issues with very low cortisol it peaked my interest even further! KC
  9. Just curious if anyone has tried MSM? I have been researching it and have found some interesting facts on it. Since I have some adrenal problems I think it would be good for me but not 100% sure. Check out this MSM-FAQ site I found..... http://falconblanco.com/health/msm/msmq&a.htm I'm going to continue my research but seem pleased with what I have read so far! Thanks for reading....have a great weekend! KC
  10. Have you tried being adjusted by a good chiropractor? I have found this to be extremely helpful when nothing else seemed to be working! Wishing you the best of luck! KC
  11. I got my first stone in 2007 then again in 2008. That was before my dysauto stuff started but I have had kidney pain that feels just like a stone is coming and then nothing! Very odd. It's always in my left side too. I'd have to get my records from my urologist and ask where the scan said I have some stones still! KC
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