futurehope

I've avoided simple carbs in the past, and it did not help my POTS. I lost weight, became weak and eventually went back to simple sugars. Are you sticking with complex carbs and is it helping with your POTS symptoms? What happens when you eat simple sugars? Thanks in advance.

Flop, Thanks for the idea about the aloe vera toothpaste. That's terrible. Your Mom thought she was helping with the fluoride drops and it changed the color of your teeth? That's too bad.

We buy stevia packets off the internet (Amazon) for real cheap. We get like 1000 packets for $37 dollars or something like that. I don't care for it but I have to put something on the oatmeal...well, I don't have to, I want to.

What do you put on your oatmeal? Do you avoid fruit?

Do you mean the poster Earth Mother? I have been "sugar free" in the past and I know it's doable. I have always had problems keeping my weight up without sugar (and fat because I avoid that too). Complex carbs do not put meat on me. I'm definitely due to go "back on the wagon" again and avoid simple carbs, because that is how I control my weight. But I must say, it sure feels good to feel good. I'm thinking it's the bit of caffeine in the chocolate as well. Maybe I should take a minute amount of "no-doz" and avoid the calories that come with chocolate? BTW, do NOT expect me to be a "good girl" this week being that it's Easter. P.S. I do seem to have an issue in the morning in that I'm usually in "starvation" mode and I need to eat. I've had this particular problem for years. It's a real nuisance. It will cause nightmares and wake me up even if I want to keep sleeping.

That is so cool! How exciting. And FWIW, I had acne way past the age that you're supposed to, like up to 30 years old. Who knows what I was reacting to? I use Tom's of Maine also, but mine has the fluoride sometimes, depending on where I bought it and what the store carries. Also, I discovered, that even with the Tom's of Maine, the sodium lauryl sulfate (I think this is for foaming action), is quite an irritant inside the mouth and can cause ulcers. I know I cannot leave my toothbrush against my cheek, or that ingredient will cause an ulcer. I had asked my hygientist about that one. As an aside, you already know that your body tends to be on the sensitive side to "foreign substances". At least you know. I wonder if it originates with a genetic mutation, or, our environment (like immunization at as an infant) will trigger this hyper sensitivity? Heck, in general, foreign substances (not natural) are thrown at us all the time, and eventually our bodies' cannot handle it. That's my take on it.

My own intuition tells me this is a good idea. It is not curing whatever does not work in our bodies:it just helps us adjust to the deficiency. I would not let myself get too symptomatic. I also would suggest moving as opposed to standing still. I would suggest building slowly on the amount of time. But that's all my opinion. In my case, I'm finding out, that a dose of sugar, or is it the caffeine(?) from a protein bar adds to the amount of time I can stay upright.

Here's another nugget of info I've learned about myself. This is in addition to the fact that if I eat a protein bar during my first lap of exercise, I do not crash afterwards. If I eat a protein bar, and I am not exercising, I am "good to go" for hours. I hardly feel like I have POTS?! Now, I do not know if it is because of the tiny bit of caffeine in the chocolate part of the bar, or the sugar content (my bar uses real sugar, not fakes). I will have to experiment with the "Glucerna protein bar" chocolate flavor ( no sugar:it's for diabetics) to see if it's the caffeine giving me the boost and not the sugar. I will also experiment with a protein bar without chocolate to see if I get the boost from the sugar content. In any event, it's great to feel so well for a few hours. I cannot continue eating these bars all around the clock or I'll blimp out. I'll keep you updated whether its the sugar or the caffeine. But it's fun to feel human for a while anyway, as opposed to feeling exhausted and dead.

Are you talking about straight oil? Does it smell bad? I have only purchased flax oil gelatenous-looking capsules from GNC. I keep them in the refrigerator, though I don't think I need to.

I have noticed the same thing. If I get less than 8 hours of sleep I tend to feel better during the day. But here's the thing, I can only do this for a couple days before I crash. So is it worth the few days of feeling a little better? or is it better to just forget about it and avoid a crash? hmm, I can't seem to find any common ground with this. oh well, that's how it goes I guess. Candace Ditto. I agree.

You are so similar to me. Remember my discussion about blood sugar? As to getting less sleep, my experience is that it is true that less than 8 hours sleep, and I feel better. The catch? After a few days it catches up with me and I crash and need 10 hours at least. As a matter of fact, my sleep doctor looked at my log and suggested I only sleep the 5 1/2 - 6 1/2 hours that it seemed my body was doing, and then stay up. No naps. Ha, ha. It unfortunately turned me into a homicidal maniac after 1 month and I haven't listened since. And that's not a joke. When I realized I could kill somebody and I didn't even care, I knew I was loosing my mind from lack of sleep. I now do what I want. My POTS doctor had told me not to lay in bed too long either. Unfortunately, I've had such negative experiences with listening to docs, that I tend to only listen to my own advice anymore.

Unfortunately, my endo only allowed me a 2 hr GTT, without catching how the insulin levels were changing. I had a peculiar "flat" curve. After 1 hr, glucose went up about 10 points, then after two hours, it went below what it had started at?! All the while the range of my glucose was always the "normal" kind of fasting range. What was very interesting to me, but not to anyone else, was at the 2 hour mark, I became noticeably sleepy and tired. The glucose reading was like 78, or something fine. Doctor looks and says, goody, no diabetes....end of discussion. I am seeing him again in 2 months and I WILL get answers. Please let me know how you make out, will you? P.S. Do you have any other endocrine issues, like thyroid for instance? I have had thyroid cancer, and I do believe my endocrine system is below average in its functioning.

Firewatcher, I hear you. It sure seems that your body is having some sort of mast cell reaction being as your getting red and cold after exercise, but really, I don't know. I wish I could give you some nuggets of info to help you on your search. Take care.

I have no idea what's going on, but I was reading that a certain type of tumor on the pancreas, an insulinoma, secretes insulin and cause people to have blood sugar changes. I'm going to see my endo and HOPE that he listens and helps me determine why I'm always hungry and why exercise causes this issue in me.

FYI, the nugget I just learned about myself included the fact that, if I waited after the exercise and ate the protein bar then, it didn't work at all. In other words, I have to PREVENT what is going to occur BEFORE it happens. I can safely say that in my case, it is the RAPID change in blood sugar that I'm reacting to, not necessarily the actual blood sugar reading. And if the rapid change has already occurred, I cannot stop my reaction by eating the Protein Bar. I hope I'm onto something here. Prevention is the key. Once the "rapid change" has occurred, the eating may help the blood sugar, but I'm still fatigued and weak. As a matter of fact, some articles I was reading yesterday were saying just what I am suspecting, which is, in some cases it isn't so much the blood sugar reading as the RAPID change of the reading. If you are diabetic, ignore what I just said. You have different issues. Firewatcher, it is pitiful that we have to figure ourselves out because doctors are not interested or do not know enough. I am in the same boat. If the usual testing is normal, end of discussion. I always seem to be in a position of putting the pieces together to figure it out. It's tiring to be focused on myself so much, but it is a necessity if I am to recover any semblance of normalcy. I suspect that you, too, will be able to figure out what is happening and how to prevent it. I realize how sad it is that we are pushed into self-diagnosis, but such is the current medical establishment.

I'm always happy to discover new ways to help myself feel better. Today I succeeded at preventing my exhaustion, "I gotta crash now" feeling after I did my walk. I took a Balance protein bar with me and ate it during my first circuit around the mall where I walk. I came home afterwards and felt fine. That was a first. I wonder if just keeping my blood sugar up was the reason? Any opinions?

I have to agree with Sophia. I naively listened to my sleep doc about 8 hours in bed, getting up the same time every day. The result? After a month I was close to being a homicidal sleep deprived maniac. I have not listened to him since. I sleep as long as I think I need to. Doctors sometimes do not understand how dysautonomia affects us. We are not their "normal" sleep patients. That's my opinion.

Thanks for the link. I didn't understand their comment: People complain about the taste of curcumin. So add other spices, such as turmeric, or other spices to the mix to change the taste. I thought they were the same substance?!

I also found some information while searching online that says to avoid Tumeric supplements containing maltodextrin and dicalcium phosphate.Maltodextrin lists headaches and bloating as side effects. I remember several people saying they felt they had headaches after trying Tumeric.Maybe this might be why? Thats from this page:http://www.earthclinic.com/Remedies/turmeric.html Thanks for the info. The GNC brand I purchased contains maltodextrin, and it did give me a headache. I've stopped using it. P.S. I haven't found anything on the net saying it can cause headaches. Do you have a link? Thanks.

Green tea worsened me. My form of POTS is currently characterized by: Hands and legs turn bluish upon upright posture I feel fluish even when lying down, especially after sleeping all night, or after a nap my onset was slow excessive fatigue reasoning is impaired lately, my systolic can be low esp. after lying down

Rama, Where would Dr. Stewart place someone like me who has excessive pooling in the hands as well as the legs?

Tessa, I checked out the hormone support group forum, and it stressed me out (unfortunately). The moderator there spent hours and hours and hours putting together a "what you should do" list in order to get well. It saddens and depresses me that an already sick patient has to work that hard to understand what is going on, because the doctors have no clue. We are not well to begin with, and the thought of having files of info to take along to a doctors' visit so he could have a clue what going on, is too much to take. I'm venting here. Why do sick patients have to spend hours and hours self-diagnosing before a doctor will take them seriously? I will be visiting my endocrinologist with about 5 questions I have, but I will not be putting a file together trying to get him to understand my condition. I may need to go to another endocrinologist, but, the truth be told, most of them make most of their money off of repeat visits from diabetics. Us difficult cases, well, what's in it for them? Unless they have natural curiosity, we are not the money makers, since they do not have a magic formula for how to treat us. Sorry. I was just venting. I do appreciate your posting. It just overwhelmed my already tired mind. I'm glad you have found the help you need. I'll be in a better place mentally when I find the same.

My endocrinologist will not go as far as your doctor in saying that the adrenal insufficiency is contributory to POTS. He says there are no studies and cannot say which came first, adrenal insufficiency or the POTS causing it? In any event, via an insulin tolerance test, he could see my adrenals did not respond as vigorously as normal, and I am taking a low dose of Cortef daily, specifically, 5 mg with breakfast, 1.25mg (1/4 pill) with lunch and 1/4 pill at 4 PM. I will be consulting with him again as I think I need more. Your doctor may be right, but my doctor said they do not know for sure which came first, the adrenal insufficiency or the POTS. To tell you the truth, I'm suspicious of your doctor claiming she knows. Can she point to a study and teach other doctors about this? Is she a holistic, or alternative doctor, by any chance? I do not believe we all fit in the same box, nor have the same causative factors contributing to our problem. Has she tested you for anything she is saying? Be wary of doctors or anyone claiming that they "know" what the cause of everyones' POTS is. That's my opinion.

Obviously, you're allergic to dogs. But keep in mind, they may have washed the pups in doggy shampoo, or sprayed some "smell good" stuff on them to take away their doggie odor. Also, I was on shots for 7 years before I "lost" my allergy to dog. I found that out via retesting. When my allergist makes the serum, he knew to concentrate on raising my threshold for dog/cat because I have animals living in my house. As the years went on, each new vile may have had more and more cat/dog in them? I don't know for sure. To get a bruise at the injection site is nothing new for me. Sometimes I bruise more than others, depending where she gave me the shot, and probably how sharp the needle was. As for bruising with hives, maybe that shows that your capillaries (teeny blood vessels) were reacting to the allergen by leaking? The leaking blood caused the bruising?! If that's the case, and I'm just guessing here, imagine what the rest of your body must be doing when under a large allergic load? It makes you wonder if your allergies can be contributing to POTS symptoms. I'm just guessing. What do you think?

There is one very important question that I have for you that you do not have to answer. Do your parents support you in any way either financially or emotionally? If the answer is "yes", I can see why it is difficult to break the ties and say "no" to them. If the answer is "no", it would appear to me that your parents priority is NOT you:it is their job. If that is the case, they are going to be overwrought should their "baby" (and I mean their "business") goes under for any reason. I have nothing against people working hard and earning a living. What I am against is people putting "things" ahead of other people. Their priorities are skewed. Again, I am not against working hard and making something of yourself. Please don't read my comments that way. Pull yourself back from the situation and ask yourself, "what are my parents' priorities?" Only you know. Not me. I have a strong suspicion but only you know the answer. Do you mean anything to them other than as a "potential employee of their business?" Their actions will give you the answer. Praying for you to see reality and to choose the right path.