sue1234

I was just talking to Alicia about hypoglycemia. You need to see if you could use a glucose meter around 11:00 and see what your blood glucose level is. Then check it again at 11:30. See if it dropped below 60ish(below 60 is considered low blood sugar). You might see a trend in your blood sugar. When it drops, your body produces all kinds of hormones to raise blood sugar, because your brain is screaming that it needs glucose! The shot of adrenaline will make you shaky, etc. My first low blood sugar symptoms are shakiness and being hot. I know I need to eat now.

I get low blood sugar, with symptoms, and my readings will be in the 50s and 40s, with one in the 30s. I am going to a new endo that says she is going to investigate further into this. They checked my cortisol level and she mentioned doing a 72-hour fast to test for an insulinoma. I have never fainted with it. Have you documented your lows by a meter to see how low you get? If you are repeatedly fainting due to low blood sugar, you need to be investigated for an insulinoma! It is not normal to get soooo low that you pass out. Try and ask you endo about further testing.

Most of my early adult life(now 49) I ate meat only a few days a week. I was not a vegetarian by choice, just a picky meat eater. Then at 40 was shown to have low ferritin, so made myself eat more beef. Got my ferretin up within 2 years. Then at 45 got my POTS. I still eat a mixed diet, but prefer veggies.

Futurehope, I'm not surprised that someone answering the phone didn't know any specifics of the how/why. And that an RN runs the show, supervised by a panel of doctors, doesn't bother me. Thanks for calling in to see what you could find out. I did look through the list of what they test, however, and it seems to be the same stuff that I've been tested for already through the years. I'm sure everyone here has had these tests also. The only thing I have never had tested was the zinc and omega-3 levels. The omega-3 levels are what most interest me, and you can order that test by itself. I will start a new thread on some interesting stuff I've been reading over the last few days about a subset of the omega-3s. I thought the story of someone improving might be useful or inspiring to many of us. I by no means "endorse" this option. I just see one person's story that went beyond what most of us have reached. We each can take it or leave it.

Do you have just all-the-time low blood sugar, like on a daily basis?

Just curious--did she actually have a carcinoid tumor?

Well, I think the documentary mentioned that the specialty lab said she needed to improve her iron status, and she had too high insulin levels, thus needing to eliminate the simple carbs. You have to really watch it to understand it--what I said in the beginning of this thread is just a "synopsis" of the show. I think that's why she had to change her eating style. They did not say it was permanent. And they did mention that it was tailored for her needs. What they test and recommend seems to be tailored for what each individual is lacking or needing for their specific body.

Let us know what you find out. I know when I've ordered my own lab tests before, most of the collection centers are usually either a Labcorp or Quest.

Me and my brain! I forgot to add the link to the testing facility: http://www.yourfuturehealth.com/

Futurehope, The video did list the labs name underneath the lady that talked about Lena's nutrient deficiencies. I found it and will post the link. She stated that for some people that absorb the nutrients from their food, they can benefit just by eating a "clean" diet. It's the people that CAN'T absorb the nutrients, no matter how healthy they eat, that need to find out their deficiencies for sure and take target supplements along with diet to get their levels up to par. I know I for one am not absorbing nutrients, as I am newly diagnosed Celiac so have some intestinal damage. I know I have been diagnosed as having osteopenia at age 45 due to not absorbing my nutrients. I am going to address my celiac and other endocrine things being looked at, and after that I believe I will have this nutrient testing done. I've paid so much money out of pocket over the years anyway, so what's a little more. I asked a doctor 20 years ago when I was having some panic episodes if we could test my vitamins and minerals, and he just blew it off, saying it was too expensive. Now I have any opportunity.

I don't know if anyone watches the VERIA channel(on Dish network), but I've been watching The Incurables on that channel for almost a year. Tonight's episode was on a young women who had dysautonomia, diagnosed by the Cleveland Clinic, and didn't really improve with her regime of meds. A few years later she had her blood analyzed for specific nutrient deficiencies(at a specialized clinic) and she started on a high-protein, low carb strict diet, and finally was able to relive her life. She had gotten to where she fainted in school all the time, so had to stay home. Now, apparently she was NOT anemic according to all of her mainstream testing, so it can't be said that she just felt bad for being anemic. Remember, she was diagnosed with NMH at the Cleveland Clinic, with a 25-30%(?) reduced blood volume, and all the fancy testing that goes with dysautonomia. One can assume someone looked at her CBC somewhere along the way. But, the increased meat and clean diet helped her tremendously! Makes me wonder. I always tell doctors I FEEL and ACT anemic, but all the labs say good. Is there something that mainstream testing is missing? You can watch the 30 minute show here if you didn't catch it on VERIA. This feed comes from the website that does the specific nutrient testing. Click on the story for Lena Wolfe. http://video.yourfuturehealth.com/

Welcome! First I would like to mention that getting tested for endocrine things might be good to rule in/out certain things that share symptoms to dysautonomia. If I were going to the doctor with your symptoms, I would ask to be tested for hyperparathyroid(serum and urine calcium levels, PTH) and a pheochromocytoma(serum and urine catecholamine levels). Hyperpara. can cause lots of muscle and joint pain, headaches, insomnia. Pheochromocytoma can cause headache, sweating, and a host of other symptoms. Both of these can cause erratic b/p and anxiety. Read up on them and see if they sound possible to you.

Well, it's 1/2 official that I have celiac disease. My antibodies came back high. Friday morning I have to have my intestinal biopsy by endoscopy. Then start a new way of eating. I will be running the same course as Cat Lady, as we change our diet and see IF our celiac disease has had ANY impact on our POTS. We may find it has contributed to some symptoms, and we may find that it only shared some symptoms with our POTS. I'm sure it will take months, so I will try and update on any improvement I hope/may experience(POTSwise). I know some of you are already diagnosed celiac and haven't gotten rid of the dysautonomia. I'm really just expecting to improve some of my symptoms, not necessarily get rid of the POTS.

Sounds like a good appt. to me! I'm glad you found someone you like--that is so important. I'm glad you are going to have all the possible endocrine connections addressed.

Wow, lots of stories since I posted this! I guess I was just wondering if our cervical vertebrae might be unstable--of course for the EDS people, but maybe also for us non-EDS people. Like I mentioned, my neck has never in my life given me issues, but now creaks and NOT flexible in certain positions, such as looking up. I feel like maybe some of you that say you actually have an unstable cranium.

Bella, What?!?!? You go into anaphylactic shock and they are slapping you in the face and offering coffee?!?! That place needs to get some professionals that understand how to treat an emergency, seriously. Poor you! I have had iodine dye a few times, and I don't react immediately to it. However, I have had an increased heartrate for a few days afterwards. I used to blame it on my thyroid, but my last CT was done when I don't have a thyroid anymore and I still got the same reaction.

Here's a virtual hug for you!!!!! I can totally relate. Even though it has never been said, my dad seems to judge our "worth" on what we DO, as in a job. When I got my degree as an RN, it seemed he was mentioning to everyone that I was an RN. He defined us(me and my siblings) by our careers. What I have learned since my POTS came is I am so much more than my career/job! I raised some wonderful kids and was a great friend(when I had some!). I have learned what is more important in life. And you doing your baking is what brings you joy and a little cash on the side is wonderful. It is hard to have negativity around you.

I have had a "cracking" neck for a few years now. I have had POTS for almost 4 years, but don't exactly recall how long my neck has been cracking. It cracks mostly at night in bed when I roll over. Initially I remember having really LOUD popping-cracking noises when it first started that actually made me be real still to make sure I could still feel my fingers and toes! I have to say I once had a whiplash from a carnival ride(can you believe?), riding the Scrambler with my kids and he turned it on full speed and went extra time! Also, have been rear-ended in a car but no obvious injury at the time(we were stopped for turning off of a highway and got hit with the guy going 55 MPH-very lucky). As I've said before, I think out every possible avenue. A while back I asked people about posture, and I guess this falls along the same line. As they are possibly finding in MS symptoms that their jugular veins are "kinked" and it could be related to head/neck/body posture, I was wondering if there could be a similar experience going on in POTS also. Just some talk here would be appreciated.

Maisie, I haven't read through your older posts, so you may have mentioned this. Have you had your cortisol levels tested? If so, have they done a CRH stimulation test on you to see if your adrenals respond to stimulation? I know you have the POTS thing going on, but with all of the stresses that have happened to you, and the fact that you don't have the "energy" or ability to do anything at all, it wouldn't hurt to have it checked on. With your head injuries, that would help them check to see if your pituitary is working. You could be spiraling into hypopituitariusm.

I can't help on a relation of POTS and kidney stones. All I know is if you get kidney stones, you should definitely have your serum calcium, ionized calcium and PTH done, along with a 24-hour urine calcium. That would rule out a parathyroid tumor, which can give people headaches and muscle aches(I see you get migraines and have fibromyalgia). It would be good for you to get it ruled out, for sure.

I wish! My dad was born and raised in Oregon, but we live in Louisiana. When we would travel up to Oregon to visit his side of the family, it was wonderful. Love the scenery with the mountains and the tree-smell!

I had found this forum in MS this past summer when I was soooo heat intolerant and wondering why people can be so heat intolerant. Of course, MS patients are just that, even though I don't think I have MS by any means. Anyway, it was all so interesting to read about Dr. Dake at Stanford and his taking Zamboni's methods and applying them here in the States. http://www.thisisms.com/forum-40.html There was one woman who had the surgery in May(?) and immediately was not heat intolerant anymore!!! Other patients that have had their surgeries since last late spring have posted threads to let people know of their progress. I usually go to the site once a week since last summer to read up on their progress. You never know what could be the cause for dysautonomia, that's for sure!!! Who would have ever thought that circulation could be at the root of people with MS??? Now, I don't think they have yet theorized WHY their veins get deformed, but straightening them out has relieved alot of symptoms for some of them. Of course, EDS seems to be a strong undercurrent for dysautonomia, so maybe kinked jugular veins could be the culprit for us, who knows???

YES! I haven't had it lately, but within the last 10 years, I would go through "spells" of a few days where I would have so much saliva. During the day it wasn't a problem, but trying to go to sleep and drooling was awful. I kept a cup by my bed that I would spit in, and once I fell asleep, it was no longer a problem. I can't relate to why I would periodically get it.

Erik--I had read up on the nicotinic and muscarinic receptors a few months ago, as I almost quit sweating in response to heat. I saw that those are the receptors at sweat glands. I didn't understand it too well, but does it basically imply that I might be low in acetylcholine to stimulate the sweat gland receptors? What would make someone low in acetylcholine?

Same here. I have almost lost the ability to sweat to heat, but do sweat when my blood sugar drops! Go figure! I dread summer. Heat intolerance is THE WORST symptom I have. I almost hibernate in my air-conditioned house all summer long. If I am in the heat for just a short period of time, my heart starts racing. I know my body is panicking because it can't cool itself down.