Canadagirl

I feel like I have an aversion to so many foods--and I think dairy is now a problem and possibly bread. How did you figure out if you have these problems, and what do you eat if you do? I am really struggling with what to eat--having the same thing over and over again. thanks

Right now I especially have it on my ribs under my breasts and my back. They feel so hot to the touch. I also have CFS, MCS and skin writing--but it is transient and only appears in the evenings (and temperature fluctuations and weird blisters and red spots on my tongue). I just had a mammogram and looked like I had a sunburn afterwards. My mom has the electric shock sensations. She got hers in her mouth after getting a wisdom tooth removed and in her legs after a bone density scan. I too had weird cold sensations in my arms and legs--they were really pronounced the week before my Autonomic Dysfunction hit me. We sound quite similar. I't's a relief to hear you have had the hot sensations for years--it must be benign then! Thanks for sharing yor story--it helps to know we are not alone.

This is a new one for me. Just wondering if anyone else had it. Before I felt like my arms and legs had ice running through them--now I just felt like my organs in my torso are boiling hot. I also had this on the back of my head last week. Years ago I had this in my left foot and it was a parasthesia--I wonder if it's the same thing. Anyone? It would be nice to know I'm not alone on this one!

Sometimes I get an involuntary cough after walking or stress or sometimes during brushing my teeth. Sometimes I get chills first. Then I start sneezing. Anyone else get this? (This is a day when I am wondering if I am the only one with certain symptoms!)

Have you ever talked to Dr Norman about your son's parathyroid? http://www.parathyroid.com I had my parathyroid surgery done with him two years ago. Dr's here said my calcium wasn't high enough but I learned that doesn't mean anything and can still cause symptoms. Dr Norman is excellent and will take emails before you ever even get a referral. I was tested for MEN1 but the endo said I didnt' have it. Not sure exactly what tests she did to know this. It's interesting, the other girl I know with autonomic dysfunction also had her parathyroid out around the same time I did. The people on the parathyroid list also have lots of strange symptoms just like us over here!

Lately I have had blisters, a patchy looking tongue and red lines on it. The little blisters and red lines only seem to come out at night. Anyone else have this? (I also have a bad taste in my mouth when I walk or am upright).

Does anyone have persistent diarrhea? I was having formed stools with undigested food visible, but the past 4 days I have had diarrhea. I have also had a (almost bitter) taste in my mouth every time I walk and some nausea. The taste and nausea tend to go away when I recline. It also feels like my stomach is always empty and when I walk with an empty stomach I start to cough and wretch a bit. Anyone else have this? I'm not sure if I should take immodium or something.

I totally had this for years! Taking a very small dose of valium and propranalol (beta blocker--blocks epinephrine) allows me to sleep and I no longer feel the adrenaline at night. I also find that sleeping from 2am to 9am helps me get the best sleep. I hope you find something that works for you Edit==I also find that doing a relaxation exercise during the day settles down my adrenal glands. When I feel like doing it least is when I need it most!

I take a saline IV once a week. I feel better that evening, into the next day and a wee bit better into day 3. I also drink about 12 drinks a day with Italian Sea Salt (just enough so you can taste it). About 8 glasses of room-temperature water and 4 that are 1/4 white grape juice and 3/4 water --also with the sea salt. I have found this to work best for me so far through trial and error. The juice seems to be a good balance with the water only for blood sugar without it being too much. I find if I drink 2 glasses of salt water and 2 of juice within an hour of waking up it really helps me feel better than if I didn't do this. My mom had sent me this on Italian Sea Salt "Italian sea salt is produced from the low waters of the Mediterranean Sea along the coast of Sicily. It is a natural salt rich in minerals such as iodine, fluorine, magnesium and potassium with a much lower percentage of sodium chloride than regular table salt. The salt pans are filled with the seawater in the spring and left to evaporate relying on the heat of the Sicilian sun and strong African winds. Harvesting takes place once the water has evaporated and it is crushed and ground without further refining. These salts have a delicate taste and plenty of flavour without being too strong or salty" I had been using table salt before that and found that this tastes better and gives me a little more energy. You need to use more of it than regular table salt. Hope this helps.

...Wondering if it's just me. When I feel better they are the same size--really bad and the right is larger than the left...

Hi, Here's the link. http://ezinearticles.com/?Myths-And-Truths...r&id=445613 and the quote: "Gastroparesis is a complication of diabetes. If you have slow digestion, you can take vinegar to help. The most common dose is one to two tablespoons 20 minutes before eating a big meal. Mixing with water or other liquid is ok." My naturopath recommended it so I wanted to look it up and see if she was on target--and found this--but if anyone here has tried it I'd love to hear about it. She said it could be mixed with water. (or in my case, salt water!) There are lots of books and articles on the health benefits of ACV but I wanted to make sure it wasn't contraindicated for gastroparesis. http://www.anyvitamins.com/apple-cider-vinegar-info.htm I also have huge body temperature regulation problems so that will be a nice side benefit if it helps for that as it says in the link above. I did a search but didn't find anything on vinegar. I should look up gastroparesis in a search when I have the energy.

I just read that taking apple cider vinegar 20 minutes before a meal can help with gastroparesis. Has anyone tried this or had any success with it? If not, any suggestions on what helps you with this would be appreciated.

Hi I was thinking more of a long term thing for settling down a person's nervous and endocrine/adrenal system--rather than a quick solution for an active medical problem like a pots attack. I have many of the symptoms of AD. In any case, I'm going to try it--I was just hoping to hear from someone here that it had helped in their recovery over the long term, and it does sound like one person found it to be positive. I vaguely remember hearing cancer patients using visualization as part of their treatment and sometimes it actually potentiated other treatment they were getting. Although I have only tried it for a few days, I am pretty much bedridden and do feel a bit stronger after I have finished a session. I think my adrenal and nervous system have been in overdrive for a long time too! I don't have much else to keep me occupied with my severe fatigue in bed--so it's worth a try!

My doctor suggested this would calm the sympathetic nervous system and help. I just started trying it--going into deep relaxation for half an hour twice a day starting with my toes and slowly working up relaxing each body part till I get to my head--synchronizing my breathing to relaxation music with ocean sounds--around half way through when I'm in the "relaxation response" I start telling myself that my body is healing and go through each symptom and tell myself it's healing. Has anyone else tried forms of this and over the long run did you find it helpful?

Thank you so much for this encouragement! Can you attribute your recovery to anything in particular? What meds made the biggest difference. Thank you for sharing! PS My temperature drops when I sleep and when I walk. When I wake up and it's low, I feel cold and in a sweat on the back of my head and neck. When I walk my temp starts at around 98 and goes lower the farther I walk (over a few minutes). My legs feel cold when I walk and my temp is dropping.