futurehope

My physician had asked for a 2 hr GTT. I know you are really supposed to have a 5 hr GTT to diagnose this. For those who were diagnosed with reactive hypoglycemia, did you see anything at the 2 hour mark? I noticed that my blood sugar went down at the one hour mark and went slightly up at the two hour mark. I did not have any of the usual "low blood sugar" symptoms of dizziness, shakiness, or sweating. But I was very sleepy. I did tell my gastro about the 2 hr GTT that I had and that I didn't have the symptoms. I then reminded him that when my blood sugar was deliberately brought way down during an insulin tolerance test, my ONLY symptom was difficulty in thinking. Conclusion: As far as I'm concerned, the usual low blood sugar symptoms do not happen to me. I'm trying to decide whether to ask for the 5 hr GTT. The doctor almost asked for it, but then decided that my symptoms do not fit. POTS has affected my adrenals ability to react, so I may need the 5 hr test to see what's going on. I want to see if anything is seen at the two hour mark, since I have had that test already. Does anybody with reactive glycemia have their test results handy to see what happened at the two hour mark?

I once asked my gastroenterologist this same question. Is my GERD from an autonomic dysfunction, or from a physical abnormality (such as my hiatal hernia which does not allow the valve to close properly)? He did not know. In my case, I suspect it's both autonomic and physical. I suspect the autonomic because my bowels seem to always have some difficulty behaving normally. I have irritable bowel, and small intestinal bacterial overgrowth. Maybe portions of my bowel do not pass the food along as well as they could? Just a guess. I also have a hiatal hernia which can contribute to GERD. This is a physical problem. So, I do not know the answer for you. Sorry you have to have GERD, but it is relatively common.

My mom pities me and on one occasion thought maybe she should have aborted me. I told her I don't pity myself so she should refrain (if possible). If my own daughter has ailments, I accept them as part of life. My health is not "perfect", so I have no expectations about how someone else's health should be. Therefore, I can accept ailments in my own child without "pitying" her. It boils down to the outlook you have on life. I believe that. A parent may feel responsible, guilty, full of pity, whatever, depending on how they view life. I am a religious Christian and every life is valued by me and I look at illness as an opportunity for me to grow in my compassion and love towards others. I have no self-pity at all. I can empathize with other people that have "invisible" ailments and suffer misunderstanding from others. Nobody's life is perfect. We are here to support each other and minister to others. Okay, off my soapbox. I certainly hope you can get genetic testing without your father's cooperation. Maybe he has a brother that would volunteer, or there is another living relative whom they could use? It is difficult enough to go day to day with this ailment. I do not need a person's callous remarks added to the difficulties. If at all possible, I steer clear of people who do not nourish me spiritually or emotionally. The last thing I need is to allow other people to drag me down. I am on my own walk and they are on theirs. I have a choice as to who I allow into my life. Obviously, if we are talking about a relative such as a parent, it is more difficult to "disengage". I get around this by having a great relationship with my mother and ignoring her remarks that are hurtful (to the best of my ability). She can only be what she is able to be and I cannot blame her for who she is and what she doesn't understand. Easier said than done. I do my best to be the supportive person to others that I would have them be to me. God bless you. You are valued and important.

I just was told an anecdote yesterday by my "normal" (no POTS) dentist. He said that on two occasions when he had been out in the cold for extended periods, that same night he would run a low-grade fever and feel it. His conclusion was that his body had increased its metabolism in response to the cold. Kind of like your body's way of preparing to brave the cold temperatures (should you decide to be out again the next day). I have no idea, I'm just relating an anecdote. I, too, can feel sickly if I've done too much.

My husband used to spike a fever. He told me it was before they knew he had an abcessed tooth.

I would not even consider doing squats since bending over or moving up and down is something I dislike. If the doctor is trying to strengthen the quadriceps (thigh muscles), there are ways to do this without squats. (Just my opinion.) As for reps, I do not consider doing anything like in my healthier days. I do very few reps, except for legs, then maybe 15 to 30. I got all my leg exercises from a posting here a while back. Most involve using leg weights about the ankle and doing them in a supine position.

For me: short term - more fatigue, exhaustion long term - more orthostatic tolerance and ability to do other normal activities for longer periods of time It is a fact of life that if you are sedentary you will lose muscle mass and make it even more difficult to move. I am not talking about very ill POTS people who cannot exercise despite numerous attempts, or other severely incapacitated people. To the severely incapacitated ones, I pray good health to you (and please ignore this post as I do not want to offend you). Also, I suggest you mention whatever ideas you have for exercising to your physician before beginning a new regimen.

I'd love to hear the answer to this. I've been spending $$$ in the last few months purchasing a supposedly bioavailable brand of CoQ10 and using it. I have no idea what I am accomplishing by taking this. What is it supposed to do?

Babette, Dr. K in Columbia is my POTS doc. He's great at listening, diagnosing and understanding what you are going through. He's also genuinely interested (unusual to see this in a doctor) and was willing to try and treat me with any medicines I had read about or seen on this forum or elsewhere. To tell you the truth, I am not cured, but I know that there is a doctor who really understands. I've never gone in expecting miracles. So, I'm satisfied. BTW, he's a "migraine" or "headache" specialist in addition to specializing in POTS. My suggestion, if you choose him, is to know what you want from him before the visit. I have also entertained the notion of going elsewhere, but I already have corroborating evidence of my POTS diagnosis from NIH. So, I KNOW I have POTS. And I haven't gone elsewhere. Unfortunately, NIH stopped doing research on POTS, so NIH was just a one-time visit. Honestly, it's up to you want you want to do. I'm a Marylander as well. Take care!

Hi - I have the same problem, but it is a new symptom. I find that I am constantly hungry, but gaining more weight than would be normal for what I'm eating. As I have a severe hyperadrenaline POTS condition, I am reading Forum postings about blood sugar problems and adrenaline swings, but my endocrinologist just "fired" me, stating that he simply doesn't understand my condition. My POTS doctor simply tells me to eat less, and follow a hypoglycemic diet. yes, I didn't gain weight until I got on Remeron to sleep, but for nine months Remeron didn't increase my weight. Now I have gained almost 50 lbs. Could somebody please help us? Elegiamore I had to get off Remeron because of rapid weight gain. Also, Remeron is contraindicated (not recommended) for POTS, so I thought. It worsened my condition considerably. I even suspect it sent me "over the edge" with my POTS symptoms.

Hi, Babette, I'm from MD as well. Hopefully you've been to Hopkins? Have you consulted with a head/neck surgeon? They seem to know the inner workings of our neck region as part of their training. I'm assuming the neurologist you saw tested your blood for myasthenia gravis, right? I suspect there is a cause for your swallowing difficulties beyond anxiety. I've heard that benzodiazepines (certain tranquilizers) can affect your nervous system. Are you on any medications that can have this affect? I hope someone can help you figure it out real soon. Best wishes.

"The only time in the last few years when I felt totally "normal" was when taking prednisolone 10mg daily for several months to control my hayfever. (Cardiologist says there is no way that prednisolone would make my POTS symptoms go away but I could stand up i"n a very hot room for hours without feeling dizzy at all)." I do not have the mast cell activation symptoms you are all describing, by I have over 600 epinephrine upon tilt, and various "normal" type allergies such as hayfever, allergies to cat, dust mold, etc. in the form of sneezing, runny or stuffy nose and vasomotor rhinitis. But, without a doubt, when on the Cortef (very small dose of 1/2 of a 5 mg pill), my POTS was better and my normal weakness was better. I love the stuff, but there is a catch.... I started to put on weight like crazy. I was perpetually hungry. I cannot continue gaining weight as I then develop knee, back and other problems such as severe exhaustion from lugging the extra weight. But, yes, Cortef (a form of hydrocortisone) is very helpful for many of the autoimmune things I have such as Interstitial Cystitis, maybe POTS, gastritis (inflammation of the stomach, and lichen sclerosis. Like I said, I love the stuff, minus the effect it has on my weight.

This medicine comes in liquid form and you can ask for a measuring syringe to pull the exact milligrams in liquid form. That's what my doctor ordered, the liquid form, because I am so sensitive to medicines.

For those who are interested, here is a forum from which I learned some things. It is an MG form within "Braintalk Communities". http://brain.hastypastry.net/forums/forumdisplay.php?f=197

If I were you I would have my doctor check my blood for Achr antibodies. If this test is positive, a neurologist can then do a work up for Myasthenia Gravis. And, yes, there are helps for this, such as the medicine pyridostigmine (Mestinon) which is already in use for some POTS patients. MG can cause muscular weakness and can affect chewing and swallowing. Best wishes and I hope you can get to the bottom of this.

My experience has been that my endocrinologist gave me a cosyntropin stimulation test. I went from about 8 to 20. Nothing abnormal there. My endo knows I have POTS and he also requested an Insulin Tolerance Test - a test we usually do not hear about. It is done in a hospital setting. They inject you with insulin to deliberately lower your blood sugar. Mine went way down to 32 at the lowest. Remember, this was done deliberately. They then do blood draws to see how my adrenals responded to the stress of low blood sugar. During my low blood sugar, my adrenals responded with added cortisol, like they're supposed to, except .... here is the key.... the adrenal response was less than ideal. The upshot is, I do not have Addison's disease, which denotes a severe deficiency of adrenal function. But I do demonstrate a below normal response to stress, as proven by my insulin tolerance test. My endocrinologist has some POTS patients on very low doses of adrenal hormone and feeling much better. I do not think this is a "cure" for POTS, just something to help with the symptoms. In my case, I stalled for years and didn't begin taking additional Cortef (hydrocortisone), but within the last month, after my yearly endocrine visit, I decided that I had many symptoms in common with low functioning adrenals. I had low blood pressure (lower than I used to have), easy exhaustion, weakness. I decided to try the Cortef again. It is a very small amount, a 5 mg pill. It had to be special ordered. I take 1/2 pill with breakfast, 1/2 pill with lunch and 1/2 pill at 4 PM. I always take it with food as it increases my heartburn. The side effect of heartburn is what kept me from taking the pills before. I stayed at 1/2 pill for 1 week. Then I added the luncheon dose. And a week after that, I added the 4 PM dose. Result: My blood pressure is normal 120/80. I do not feel like a "dead" person and actually feel better. I have become much more aware of a "crash", my terminology for when the pill wears off. I also have thyroid issues and need to keep my synthroid at the correct levels. I plan on taking this minute amount of adrenal hormone as it definitely is helping me. I do not feel cured. I feel like I'm "managing" the POTS. This is only one piece of what I do, but I felt that this info might help you. Best wishes.

Wow, how exciting to get to see Haleakala Crater! I'm glad you went. I don't know the answer to your question but I agree that you probably had less oxygenation, so your body was trying to compensate somehow.

Old Lady Lighthead, How did you find this out about yourself? I will say that for me a big part of my pooling issues were from my blood proteins getting too low. The proteins in the bloodstream hold the fluids in the vessels and keep the fluid from moving out into the tissues. How do you know all the stuff about what your pooling issues are and what caused them and what to do about them? Thanks.

Let's see: --stomach discomfort only when lying down, headache when lying down, ringing in ears that gets so loud that he cannot sleep, insomnia, feeling morose on waking, fatigue after eating Stomach discomfort only when lying down - reflux maybe? The acid is possibly bothering him because it is backing up into his esophagus - you need a GI doctor to diagnose this. and BTW, you are supposed to wait 2-3 hours after eating before you recline, esp. if you have stomach problems. Headache when lying down - Can he take his blood pressure when this happens to see what it is? Ringing in ears - many different reasons including medications, blood pressure Insomnia - well, if he has stomach issues, they can make it more difficult to sleep, that's for sure. Then again, many of us are familiar with insomnia. Feeling morose on waking - I'm not even sure what morose means? Does he mean irritable? Heck, that could be from low blood sugar, or from low blood pressure, or ????? Fatigue after eating , We all know if you do have dysautonomia, the blood going towards digestion means we have less going elsewhere. In this person's case, has he been tested for diabetes? or sugar related issues? I mention this because of the "morose upon awakening and the fatigue after eating".

Rachel, What is the "nitrous oxide" you refer to in your signature? Also, is the Neurozyme hard on the stomach? It seems to have many ingredients and, unfortunately, those kind of supplements usually exacerbate my heartburn. Thanks.

Pamyla, I'm using Jay Robb's whey protein because it has some sweetener - stevia. My husband prefers the unsweetened eggwhite protein powder he makes. Jay Robb also carries a soy-base protein powder. Old Lady Lighthead, Yep, my husband is doing the fruit flush diet and he likes it.

I'm no doctor, but it sure seems like in your case you may need to take some supplemental iron on a routine basis. Heavy periods had made me anemic so I understand. As for how much iron you lost in a certain amount of time, I don't know what that means except that in your case, you need to keep watching yourself.

????? Are you saying this is the first time you've realized that being on your feet increases the likelihood of a migraine? Or are you saying you already knew this, but now you know the reason this happens? I really don't understand all that the article was saying because I am not familiar enough with neurotransmitters. But anytime doctors can come up with something that might help us, I'm listening (whether I understand them or not LOL).

I just started using a protein powder, Jay Robb brand, without artificial sweeteners. It uses stevia as a sweetener. I started using it to avoid eating junk, and give my body something substantial during snack times. I'm noticing I feel a bit better. And I hasten to add, I was not using it to feel better, since I am totally unfamiliar with anything to do with this, so it is not a placebo effect. Does anyone on this forum know anything to do with proteins and benefits of supplementing with them? I'd appreciate any input.

I'm glad the doctor had an idea which antihistamine was causing the higher heart rate. We all have to be aware of side effects from medications or supplements. It isn't always obvious what side effect came from which med?!