December 15, 2017 at 6:38 am #1139
Dr. Driscoll, I have such a horrific situation that I’m hoping you will be kind enough to give this long message, my circumstances, and my situation a chance. I’ve spent the last 18+ years dealing with doctors who 1) don’t know how to help and 2) don’t believe me. Every time I open my mouth to try to tell my story, I come to tears at how impossible it is to explain to people without sounding crazy. The person hearing me is somewhere from 1% to 95% on board with me, but won’t ever make that leap to truly 100% believe. How can I get help for a problem if people don’t believe me? My story begins when I was 13 years old. I was, I guarantee you, the most sensitive person to medications & herbs this planet has ever seen. And a serious of a problem as that was, doctors didn’t even believe me. I don’t know how to explain to you how severe of a sensitivity it was without you believing I was having psychological issues. It was scary and dangerous to be that sensitive. There are active herbal medications in so many products we don’t even think about such as herbal shampoos, OTC acne medications, etc. My family and I traveled all over trying to get answers from the medical community. Through my teenage years, I was in tears frequently, because my family and I knew it was real, it caused me massive problems all the time, but the medical community had nothing to offer and didn’t understand the urgency around this problem. I found some compassion and understanding from people online with similar sensitivities… and they were all on a forum for people with CFS, MVP Syndrome, POTS, ME, Dysautonomia, etc. These people told me they had similar sensitivities to herbs and meds, however mine was the by far the most extreme case. They understood what it was like to have doctors not believe you. In 2005, I went to Birmingham, AL to a clinic for POTS and POTS-related symptoms after talking with all these people with similar sensitivities as me, and I was diagnosed with Dysautonomia and POTS Syndrome after various tests including a tilt-table test. The doctor had no idea how to help reduce my sensitivities though. Through some online advice from one user and pure coincidence, I discovered a way to get relief from my sensitivities. I found out that Ashwagandha for some reason magically reduced my sensitivities so that I could function like a normal human being! I had to take it every day, and if I missed a day, my sensitivities came back. Now that I could actually take herbs, I discovered through trial and error that Chamomile actually did the exact opposite of Ashwagandha, and it would bring my sensitivities back if I took them together. I spent over 4 years having to use Ashwagandha extract once daily to be able to live like a normal person. And I could not explain why or how it worked. In 2009, after reading that Ashwagandha is cholinergic, I decided to see if CDP Choline & Choline Bitartrate would be a safer alternative than taking Ashwagandha every single day. Surprisingly, it actually worked to reduce my sensitivities. But it was permanent, and I didn’t know it. I kept using it and my sensitivities kept getting less and less until meds didn’t even work anymore, and I’m at the point now where some meds even have paradoxical reactions. It permanently left me with extreme fatigue, muscular pain, brain fog, reddish face, bloodshot eyes, and more symptoms that have lasted over the last 8 years and got exponentially worse when I retried the choline supplements again this year out of desperation. If you imagine a teeter-totter, and having a supplement slowly over time flipping it from the left to the right when the rest of the world is 50/50. I’ve been desperately been trying to get in touch with you to discuss my abnormal and unique situation to get your personal insight and your personal help coming up with a hypothesis. You have researched and you understand this stuff 1,000x’s better than anyone else alive! The front office at Pots Care has denied to see me, because they say I “don’t have POTS,” even though I’ve had it my entire life, and it showed up on tilt table tests in 2005 and 2010, yet it’s just not technically showing up now. I don’t know HOW these supplements were affecting my sensitivities like they were, but I promise you I’m not crazy, and I’m not making this up. I’m begging and praying for a someone to take the time to use PubMed and other resources to help me figure out through what mechanism the CDP Choline/Choline Bitartrate was reducing my sensitivities so that I can get them back (partially) and get help from all these extreme symptoms. Please help me. You might be my only hope. Can you help me figure this out? Can we at least discuss my abnormal situation in person at a minimum?December 27, 2017 at 5:55 pm #6225POTSCareParticipant
Hi Joejack, I’m so sorry you’ve been suffering for so long, but I absolutely believe you are sick. Not uncommonly, many of us don’t get the validation we need, despite our suffering. Until we have better labels for many of these issues, this lack of validation will likely continue, unfortunately.
🙁 Your case sounds extraordinarily complex (not unlike most of us, frankly). Because you had POTS for many years, but now do not, something has clearly changed. Unfortunately, I can’t tell what that is,
and don’t have any easy answers for you. My research into acetylcholine resulted in answers for so many of us, but when a patient is as sensitive as you are (again, not uncommon in many of us), unless we can be sure of the quality of the supplements you took, we have a wild card out there. You may have had some reaction to a contaminant or additive, for example. It’s hard to know. Meanwhile, at POTS Care, we are getting closer to taking on cases such as yours, where you may not have frank POTS, but we may be able to help by digging deeply into your case. We promise to keep you all posted as we work toward making headway, OK? Hang in, Joejack!December 27, 2017 at 10:22 pm #6226
Can you see if you can come up with a hypothesis? I am confident it is reversible since it was a gradual change from one end of the spectrum to the other. Plus the fact that Chamomile used to make me more sensitive and Ashwagandha used to make me less sensitive, tells me that it is a spectrum that is changeable.
I’m guessing it has to do with Muscarinic Receptor Densities, since all those supplements listed seem to affect that type of stuff. Or perhaps a7 nAChR’s aka Alpha-7 Nicotinic Acetylcholine Receptors.January 13, 2018 at 10:23 pm #6232
I do have POTS in fact. Always had it. I was just re-tested January 4th, 2018 and it confirmed for the 3rd time a 30+ BPM increase in HR when elevated.
The test I had last september that made it look like I didn’t have it wasn’t done properly, because they only have me in the supine position for 10 seconds before the elevated me right up, and I was elevated before the test.
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