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Hypothyroid & Postural Tachycardia Syndrome
Autoimmune Diseases | Last Active: 6 hours ago | Replies (36)Comment receiving replies
Hi Marcelle,
So much has happened since this post for my daughter we are now dealing with ITP, EDS along with the POTS snd thyroid. As for the pain we tried all pain meds and none worked. We do have imitrex when the migraines are real bad, but we ate lucky enough to live in a state where marijuana use is legal so I got Sophia a medical card for CBD oil. It is the only thing that help with the pain. As for pots all we can continue to do is fluids and salt but sadly nothing is teally helping and Sophia cant work either; were trying to get disability for her now. This autoimmune disease is horrible. I joined dysautonomia international to try and spread the word to help our kids more. Best of luck to you and your dsughter
Donna
Replies to "Hi Marcelle, So much has happened since this post for my daughter we are now dealing..."
@donnaburch I am sorry to hear about your daughter! Dysautonomia International has been a great resource for me. Has your daughter tried cardiac rehab for her POTS? I know it can benefit some patients.
Hi Donna, I see that another year has passed since you replied to Marcelle. But, my daughter has Dysautonomia (POTS) and suffers from daily headaches and dizziness that is exasterbated by increase in heartrate and/or adrenaline. She misses school and had been forced to give up the sports that she loves. My husband and I have looked into the chronic pain treatment program at the Mayo Clinic and we are also interested in learning more about CBD oil. Was the CBD oil that your daughter is using prescribed by a doctor? Where do you purchase it or is it something that you get from a pharmacy? We want to make sure we are getting the correct kind of cbd for her conditions. There are many, many questions. Thank you for any help you can give.
@donnaburch ,
Have you looked into a condition called Beriberi? Many POTS patients (like myself) are misdiagnosed with POTS where they really have a condition called Beriberi. All that is needed in that case is B1 (thiamine) supplements (or injections in my case).. This is especially common among those patients who also have some kind of IBS which does not allow their digestion track to absorb B1 from food.
I recommend googling the word POTS and Beriberi together.
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Hi Donna.
Thank you so much for responding. I really appreciate it. Sorry to hear that Sophia has learnt of additional autoimmune disorders. As you say these disorders are very cruel and life changing. Thank you for sharing the cbd oil information. I had not even considered it and after some reasearch it has recently been legalised in the uk so could be a line of enquiry for Shannon if all else fails. Shannon also has eds and as time goes on she struggles with more chemical sensitivities etc. I am hoping to get her natural dessicated thyroid. Have to keep trying along with finding some days when we forget about it as much as possible and do things that make us laugh. Hopefully your daughter has kept some friends. Sadly Shannon has lost all of hers as they just cannoy seem to find it in themselves to give her small chunks of time in a quiet setting rather than a noisy nightclub. Once again many thanks and if we find something which may help through our medical.support in the uk i would be happy to share it with you.
Best wishes
Marcelle