December 26, 2016 at 3:08 pm #1072MissCBParticipant
I’ve read every interview and as much info as I can find on the Driscoll theory and everything she speaks about fits me perfectly. I was decently healthy but developed cholestasis (rare pregnancy induced liver disorder) with my last pregnancy and my health crashed after that.
I developed horrible anxiety, crushing fatigue, and brain fog/dizziness so badly that sometimes I feel drunk for no reason despite my healthy gluten free lifestyle. There’s a million other symptoms too including random nerve pain and they are almost all corrected when I take choline.
I’ve tried various doses of choline bitartrate and Alpha GPC and feel fantastic except that it makes me have burning along my distal ribcage and my biggest concern- it feels as if my brain is tingling.. almost as if it is tightening up like when my scalp gets goose bumps except it’s stronger and won’t let off for several minutes at a time. It scares me too much to continue supplementing but then the anxiety and fatigue come back.
Am I missing some co-factor needed for the choline?? I’m desperate to fix this as I have a baby and a 3 year old depending on me. Do you have any ideas on why I’m unable to tolerate choline?? I would be extremely grateful for any advice you could offer. I’ve been drained financially dry by the medical community in my desperate search for answers and don’t know what to do.December 29, 2016 at 2:49 am #6063TigertailParticipant
Hi. I, too, am a newbie. I do not have the answer to you question, but wish I did, especially because you have young ones to care for.
You are the only other person I’ve heard of with a tingling sensation and a feeling of goose bumps within their head, just under the scalp. I have this same sensation from time to time in recent years, but it never lasts very long. I am 62, recently diagnosed with POTS and EDS. MCAS is suspected. Since you mentioned Choline, I will tell you that my B6 is 4 times the high end of the normal range and my B12 is 2 times the high end of normal. I have no idea why this is so. I am now cutting back on any foods containing B6 and have stopped taking B Complex altogether. I am negative for the MTHR mutation, so that is not my problem, but you may want to get that checked out. It could be you aren’t metabolizing your B vitamins normally. Or it could be something else.
Does anyone have any idea what the problem could be for either of us?December 29, 2016 at 4:04 pm #6067MissCBParticipant
Thank you so much for your response. I’m sorry you are going through this too. 🙁 I don’t have an official diagnosis, my PCP has ordered a ton of bloodwork which was all normal and then told me my symptoms are due to anxiety. I strongly suspect POTS though.
I ordered 23andme and am heterozygous for PEMT which might explain low choline. I’m homozygous for several of the detox SNPs and heterozygous for MTHFR as well as the MTRR, VDR Taq, and CBS. I’m currently treating myself for CBS using bentonite clay and yucca to detox excess ammonia but am not sure if this is helping.
I’ve spent hours researching on pages like Phoenix rising but I really feel like the Driscoll Theory is my answer.. If only I could tolerate the treatment!! My B12 was pretty high too, I’m not sure why. I read somewhere that B12 is required to synthesize choline so I’m not sure if this is part of the problem..
I’m praying Dr Driscoll or someone can help us out so I can start on Parasym Plus. I’m in the process of reading her ebook right now in hope of answers.
Do you think anyone still gets on here? I’m not sure Dr Driscoll still does and don’t know how else to contact her. (I can’t afford to go to POTS CARE)December 31, 2016 at 2:24 am #6071TigertailParticipant
I am new to all of this, so I don’t know if anyone still gets on here. I was only recently diagnosed with all these things. I also have elevated ammonia levels so I would be interested in finding out how you fare with the yucca and betonite. I have been poring through the Internet for help. I have a wonderful neurologist, but he’s very much in demand. I can email him though (just don’t want to wear out my welcome). Honestly, I’m pretty sharp, but I couldn’t understand everything you were telling me. My neurologist thinks I have SIBO and that’s why he has me on a strict gluten-free diet. I thought I would hate it, but I don’t. It’s helped to alleviate some of my symptoms. 23andme is something I’ve been contemplating, Do you think it helped you to better understand why you are having your problems or has given you ideas for what to do?January 5, 2017 at 10:05 am #6077Dr. DianaKeymaster
Hi all, I guess you can see that we are not all alike, despite some commonalities. None of us are easy cases, certainly (which is one reason we see people for a week at POTS Care, and often need to continue to work with them when they leave). I know how hard it can be to try to find answers to our individual cases. 🙁 I did want to mention that choline doesn’t cross the blood-brain-barrier. Alpha GPC does, is needed in MUCH smaller quantities than choline, but is also only one component that we found was important in Parasym Plus. The balance of all of the ingredients was critical, and was the only way to effectively boost the vagus nerve AND boost acetylcholine for the brain. Currently, I am on Zyrtec, and Parasym Plus has no problem overriding its anticholinergic effects. Hope this helps!
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