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November 20, 2013 at 2:17 pm in reply to: hiGH B12 ANYONE? HYPERADRENERGIC POTS Dr. Diana pls help I am newbie #4609
thank u Charlie
I am going to checkout the video info
Yes, the gluten free stuff is sooo limiting! There is not much to eat! only been on it for a few days, and it is very expensive! I am thin, like you ,110 lbs, so I don’t want to lose weight either, so far no weight loss. I am having rice hot cereal and fruit for breakfast, morning snack KInd bar. Lunch cheese meat sandwhich, afternoon snack, dinner chicken /veggies. I did have to get gluten free chips!! found them! now is there a gluten free ice cream or candy?? Found sprinkles gluten free cupcake!! I have had a time, about 15 months ago where my weight went down to 98 lbs, no reason we could find, I was eating all my normal foods. Just as it had lost weight, it stayed like that for about 2 months then it all came back in about 3 weeks! Very strange. Then another time I bloated/gained to 117 and yet, I had not changed my eating at all. This has only happened one time for each, I cant explain it. I have NOT taken any b12 supplements, it is strange , I thought I would show low/defienct in b12.
I did just call my dr at Mayo, but so far he has not scheduled me in to discuss the labs and what to do about the high b12 level. be well and thank u , again for all your help/info. I am at my wit’s end with not being able to work, clean my home, do activities with my child. I am doing what my doctor said, drink more water, salt increase, little exercise each day, etc. still I cant do much of anything. I am tired of having a dirty home and not bringing in an income.November 14, 2013 at 10:24 am in reply to: hiGH B12 ANYONE? HYPERADRENERGIC POTS Dr. Diana pls help I am newbie #4593
thank u for responding. is all your b12 and blood work normal now? and are you any better? I am not familiar with gluten free diet, but I will try it, as if I can get the b12 down. My current doctor is a NUero at Mayo, and I must say he has been the only doctor I have seen since I got ill in 2005, that I feel is knowledable in pots/dys, none of the other doctors/cardio, neurosurgeon, pcp, oncol, endo, etc even mentioned oi/pots.dys or testing for it! and I referred myself to Mayo this past aug, as I was completely desperate, feeling this is my last chance to get answers and treatment plan and attempt to be well, and I had googled my symptoms and dysautonomia/pots had come up. So, I thought, maybe this is what I have! My cardio doc, who I was seeing in Aug told me NO she would NOT refer me to Mayo! even tho she kept telling me I was fine,(she just did the ekg, echo and treadmill for 6 min on me) I told her NO, that adrenaline keeps releasing in my body and I could feel it when it happened! the surges and anxiety,stress and panic! I was convinced it was dys/pots, anyway, she said NO to referring me, and I actually had to threaten to go to the Med
Board, so, she finally sent the referral form to Mayo. I had tried to get into Mayo by myself, self refer, and they said NO, had to be doctor refered! The Mayo doc, did tell me to drink water, up my salt, compress stockings, start little exercise 4min day, all helping a bit. but still cant control the adrenaline coming out in stress, surprise situations, loud noise, bright lights set it off, like being startled. I cant control it, taking a flexeril helps a bit, by making me sleepy and knocking me out. I have NO idea how to do the gluten free, but if it helps I will do it. are you still on it forever? thank you so much for giving me the info. I have not had a normal life since 2005 and I want to get to be as better quality , back to as much normal life I had, if I can.
I am new to group and was diagnosed Chiari 1 in 2006, cci 2008(eds classical in 2008) but my spouse “poo poo”ed on the eds and cci diagnosis. Have had the dizzy, chronic pain, fatigue , etc. seen all the PCP, cardio. ent, Neuro, Neurosurgeon, etc Have not worked since 2008 due to my symptoms. Just found Mayo clinic and had to force my cardio to refer me to them for the autonomic testing. My previous doctors all awful. never would refer me when I asked for a Vit D test, they said NO. and now this cardio said NO. I had to threaten to call the medical board! Anyway, saw the Neuro, he did the ttt, only had me upright for 10 min , it did not trigger my symptoms. but did trigger erratic bp. He diagnosed me with Orthostatic intolerance. I also, have mine trigged when I go up my 16 stairs of my house, it will ususally trigger my heartbeat to 180 . I told the Neuro at Mayo this. He started me on 2l water day, salt 6g day, elevate head of bed, compress stocking, exercise daily, it is helping some, I can feel the difference. I have gotten my Vit D up from 11 to 30 now. Now the doctor wants to do a CATECHOLAMINE BLOOD DRAW TEST. What is the point of this? is it costly? It says will take an hour and a half. drawing blood at 30 min and then after 10 min of standing?