futurehope

Dixzeland, No, I'm not. But, believe me. if I were, I would be seeing Dr. Levine. I mean, why not? If someone could improve my life, I would go for it. Like I said, I'll continue what I have already begun on my own. If, after three months, I feel there is no improvement, I will consult with a cardiologist. I will need a cardiologist to be supervising my use of Dr.Levine's program. Praise God for your wonderful, caring, supportive and knowledgeable doctors!

My neurologist has already done a real one, as well as NIH (National Institutes of Health). I already have a diagnosis. My neuro is doing his version of a poor man tilt on each of my visits. I suspect, in order to save time, he takes a reading after I've been sitting in his waiting area, then at intervals when I'm standing while in his office. Then he doesn't have to "wait" 5 minutes while I'm lying down before he begins my standing readings.

Mack's Mom, I have no idea why my neuro does not have me supine, and then standing? He has an examination table in the room. It never gets used. Maybe next visit I'll ask, but I suspect it is the time constraint. As it is, he comes into the waiting room with his blood pressure cuff and takes my sitting BP, then does the 10 miniutes standing. So, he is skipping the time-consuming step of having come into the examination room, lie down, and essentially do nothing for 5 minutes. Many times I have told him that sitting is just as bad as standing for me. Also, he is aware of how to do a TTT, since he has done one of them on me. I believe it is the time and monetary constraint affecting the methodology of his poor man's tilt.

Dizzysillyak, This is the email I sent: THR-IEEM-POTSRegistry@texashealth.org Hi, I will be seeing my neurologist on January 13th and would like some info to give/show him before my visit if possible. I have POTS and have tried to exercise as much as I could, but am open to a regimen that might improve my functioning. Thanks in advance,

Miriam, I've been doing all my at home exercises, plus mall-walking for years....all during POTS. At the fitness center, the recumbant bike and treadmill that I use continuously monitor heartrate because your hands are on the sensors. So, what I am saying is, that exercise itself is not new to me. Like I said, I seriously doubt any "cure" at this point, just improved functionality. We'll see. I was exercising on a daily basis pre POTS, and a "POTS attack" (heartrate went way up) occurred, had me breathless, and scared the living daylights out of me. Then began my quest for answers. Unfortunately, I stopped moving all together because of the fear of 'what might happen" and because I had no clue. Since my diagnosis, I have always tried to maintain some level of fitness, so like I said, this is nothing new for me really, except for the bike and treadmill's abilities to monitor my heartrate. Just thought I'd add that my experience has shown me that illness and stressors (like lack of sleep) can have serious repercussions and set me back for a few months. That's why I try my darnedest to avoid getting sick and to maintain an even emotional keel. If I don't, it can set me back more than it should. Well, now that I think about it, maybe my foray into exercise is really nothing new for me, but I will stick with it and remain disciplined about it as long as I can (until the next set back). For those wondering how I managed to do all this, I can say that at the beginning of my personal exercise routine, post POTS, I was scared out of my mind. I remained close to home, wore identifying info around my neck, and coerced my husband to be with me in case I began feeling "weird". So, after many moons of feeling weird, spacey, whathaveyou, I now think I'm capable of more than when I first began. It was scary, but necessary for me to push through the fear. It's just the way I am: PUSH is my middle name. But.... when asked by my doctor, I tell him "I'm unchanged." Not better. Not worse.

My neurologist and I discussed the possibility of using Dr. Levine's exercise program for improving my POTS. Since my doctor is a neurologist, he would agree to send the research team the data showing my diagnosis, but is unwilling to monitor me. If I go that route, he suggested I get a cardiologist who is associated with a cardiac rehabilitation program. I agree that a cardiologist would be the doctor of choice to be the contact point between Dr. Levine and me. But, I do not have one. Since my neurologist has seen another study in which POTS people were using recumbant bicycles (or some such) to improve functionality, he suggested continuing what I currently began last week in the fitness center, and the other exercises I do on my own. I will be seen again in three months to see if I notice any improvement, and if he can measure any improvement via the poor man's TTT (poor man's TTT means stats sitting, then at intervals of standing for up to ten minutes). My neurologist does not see the need to use Dr. Levine's program, per se, since he feels we can benefit from exercise on our own. I will do my own experimenting. If after three months, I think I've reached a plateau and desire to move forward, at that point (he suggested) I will get in touch with a cardiologist to monitor me and give suggestions. So, for now, I'm sticking with what I'm familiar with, and that is: One of two exercise/stretching DVD's for abdominals on a daily basis. Light free weights at home for use on the floor for biceps, triceps, pectorals and shoulder muscles. Using some of the weight machines at the gym I have just joined (I've used them in the past (pre-POTS), and am familiar with them) , including their abdominal machine. Using the recumbant bikes and treadmill to monitor my heartrate, speed and time. We'll see how it goes. Personally, I do not see how I can "cure" POTS unless I modify something. Apparently, Dr. Levine is deliberately having patients enlarge their hearts. I will not do anything of the sort unless I'm under a cardiologist's care. I said I'd check back in, so this is the latest.

I think that neurologist at Mayo has a severe mental disorder. I just love it.....not. I mean, take a person whose life is going really well, no problems (let's take me, for instance), and then try to convince me that I ruined my life on purpose! Right! .....Wrong! Its absolutely unethical to be passing this garbage around. I know I had to straighten my GP (general practitioner) out, because he was suspecting a mental diagnosis for me. I straightened him out, and now every time I see him, he tests my blood pressures and heartrates, and concludes,"they are all over the place, aren't they?" DUH!!! These idiots do not deserve the title "Doctor of medicine".

Hi, I'm going to my POTS physician next week, and I'm bringing the contact info with me. I, too, am interested if I can participate in this POTS exercise protocol. I've just joined a fitness center, so the timing is perfect. I also own a heartrate monitor, which I suspect needs to be worn by me to keep my heartrate within the target range. I hope my doctor is open to doing the inital contact, and doing the preliminary testing and follow-ups. I have just received my first email from Tiffany (THRIEEMPOTSRegistry@TexasHealth.org)and will pursue this. I intend to keep people on this forum up to date on my progress if I enroll in the program. ETA: The only thing that has got me scratching my head is that I was working out and in okay condition when POTS struck full force?! Also, I vaguely remember someone on this forum in the past who was a member of the armed services (IOW, in great shape), when POTS struck?! Maybe this protocol is geared specifically to us?

How do I not totally freak out if I'm feeling badly? Well, it's so common for me to feel badly, sometimes worst in the AM or after sleeping, that I'm used to it. It's been many years since I've felt normal like I used to feel, so unless something is seriously out of the ordinary for me, I tend to "go with the flow". It is not uncommon for me to look and feel terrible in the AM. In my case, it does not necessarily mean I'm going to have a bad rest of the day. I've had some days where I looked and felt terrible in the AM, and then went on to have a good day later. So, I guess what I'm saying is, I've learned to live with the unpredictability. I do not have overly high expectations because I'm aware that the "present feelings" are not necessarily reflective of the rest of the day or the rest of my life.

It sounds interesting, but I wonder where the author got his information from? I would feel better if there is some proof to what is being said. Granted, this naturopath could be right, but at this moment, I'm skeptical. Maybe if there were studies done that corroborate the findings? Maybe there are such studies, but they were not listed on the post?

Well, after trying the long hair to cover the thinning, and now the chin length, I've decided it is easier on my hair to have it shorter rather than longer. The hairs still might fall out, but there is less pulling from combing and getting caught on things. I've also had to make peace with the fact that thin straggly hair is thin straggly hair, whether shorter or longer, and the longer version (in my opinion), pulls more attention to it than the shorter version. I do not want to give you advice as to what you should do, as hair is such a personal thing. You will need to experiment and make your own choices. Each of us has different hair, and different hair texture and color. I'm sorry you are dealing with this. It is not easy or fun.

Hi, Just wanted to add my two cents. My POTS reared its ugly head about 9 years ago. I used to have a thick head of hair with lots of its own body. I could have worn any hairdo I wanted. My hair was very easy to manage. It waved if I wanted it to, or remained straight, but always the wonderful body and fullness. Fast forward 9 years to the present. My hair is now so thin and fine that I cannot even hold a hairdo overnight. There is not enough hair for it to have body or shape unless I do something like use a curling iron. I tried growing my hair longer and pulling it back to make it "look like I had more hair". It didn't work. I now have it cut in layers at about 1 inch below my chin. I can manage to get it looking real good after washing and then using the curling iron, but it will only survive that day . I seem to be going bald, and all the doctors tell me is, "you're probably one of the unlucky 40% who gets hair loss after menopause." I will only wash my hair twice a week to keep from stressing it any more. Also, I now refuse any hair dies, and will sometimes encourage the hairdresser to "just cut it" and leave the styling to me because they tend to pull the hair and heat it to the frying point when blow drying. I let my hair air dry. I cannot wear wigs because anything around my head gives me a headache. It has become a regular challenge for me to get my hair to "look okay", and to hide its lifelessness. It *****, to put it mildly. This part of the POTS illness is something I'm still adjusting to. I'm assuming POTS has something to do with this?!

Lieze, How awful to have to endure these "attacks". There are so many different things that some to my mind when I read about your issues. Sometimes I get a milder version of what you experience. I'll get tachycardia, racing heart, if I have been too hungry, then I eat something with too much sugar. I'm used to this and it does not happen all the time. As for your meal, do not forget that the pork and potatoes might have had some seasoning, preservatives, or other condiments that you are not thinking about. For example, I react poorly to garlic. It lowers my blood pressure, I think. Also, do not discount any beverages with "unnecessary" ingredients in them, or chocolate milk with its caffeine. There are so many reasons you may be reacting, and the only way to "know" if it was the pork and not something else, is to try it again. I would suggest no seasonings, or preservatives. Also, think about the situation. How were you before you began eating? Had you taken any pills, medications, for anything? Had you been overly hungry before you ate? Did you take any supplements, or vitamins? You will have to take the time and energy to be your own detective. Maybe you are sensitive and reacting to a particular food, preservative, or spice? Maybe not. If you do not feel motivated in this, then you will have to learn to endure these uncomfortable reactions. It's no fun, for sure.

One of my worst sensations happened to me two weeks ago. I'll feel like I was in the process of falling over...it appears to me to be the beginning of a faint or blackout. I may feel extremely dizzy and totally unnerved by the fact that I am on the way to falling. Yet, I tend to come to soon enough to prevent the faint. I get so unnerved by these episodes since I have no warning....unless standing up for a long time, and then leaning over is a warning???? I will then remain a nervous wreck on the lookout for 'passing out' attacks. So far, it has only happened to me 2 - 3 times over a period of years, but it lowers my confidence until enough time has passed without incident....then it may happen again. I wonder if my BP is falling? Who knows?

Handmadebyemy, Is the endocrinologist you are discussing in Maryland? Because my endocrinologist (or I should say, one of endocrinologists), sounds like your mother's doctor. Even though my adrenals showed a less then optimal response to stress, taking supplemental cortisol (in a small amount) did not help me. As a matter of fact, I prefer not to suppress my adrenals with external forms of the hormone in case it would have a suppressing affect on my own adrenal output. I tested okay on the cosyntropin stimulation test.

Just today, when discussing my health history with a new podiatrist (foot doctor), I checked "yes" next to low blood pressure. When he asked me "do you have low blood pressure?", I said "sometimes". "I have a malfunctioning autonomic nervous system." He seemed satisfied with that. Then, when discussing my GI system, I said that my gastrointestinal system is always malfunctioning. I have had irritable bowel my entire life. They are all related. I try to explain my condition in the simplest terms possible with as few words as possible, and only elaborate if they are interested.

I haven't read all of the replies, but thought I'd chime in. "Taking care of yourself", and discussing "taking care of yourself", are two different subjects. This is how I handle encounters with others who do not "get it". I do for myself what needs to be done to help me live my life to the fullest. Most times, people do not question or care what I am doing. If someone asks me "what are you doing that for?", I respond in as few words as possible. I give no lengthy explanation of my symptoms or illness. I might say, "it helps me enjoy the moment" "It helps me participate for a longer period of time". I'm matter of fact and without self-pity. Usually, I do not discuss my medical condition unless it is for safety reasons or necessity. Example: I had my feet up resting on a chair in a doctor's office, and the receptionist chided me for doing so. I responded, "I have a medical condition. If I don't do this, I might pass out." That was all it took to answer her. My husband and grown daughter tend to get embarrassed when I use a motorized scooter in a store since I look so healthy. I ignore them, and use it anyway. It turned out that my 4 yo granddaughter enjoyed riding with me, and it became a fun time for us both. I try to not engage in lengthy discussions and defenses because it is a waste of time, and most people are not that interested. Remember, you are in charge of taking care of your needs. Other people cannot fully understand. Don't expect them to. They are not you.

Pre POTS - I used to exercise every day. Weights, abs, walking. After POTS - I kept trying to do something in order to pretend that I could continue exercising. I would take walks, do abs every day, do some weights, then I would need a nap, or be overly exhausted (sometimes this reaction was delayed). Recently, in the last two months, I've quit exercising all together, and I feel great. I'm living my life, doing a lot of things, took numerous vacations, pushed myself to expand, didn't need naps and now I'm wondering???? Should I forget about exercising or what? Deep down I'm an exercise nut, but it sure feels good to participate in life so....I don't know how I'll proceed in regards to exercise? To do, or not to do, that is the question?

FWIW, sometimes I "crash" in the heat. This means that I feel very weak, tired, unable or unwilling to talk or move or do anything. It may coincide with a narrow pulse pressure (in me), of 102/82. I took my BP to see what it showed when I was feeling this way, and the above is an example. Possibly, this is my bodies' "poor response to stress". I was told I had this 6 years ago when they checked my adrenals after deliberately inducing stress (via lowered blood sugar), but who knows? I usually recover from these episodes. On occasion, I've ingested caffeine, either in a Coca Cola or chocolate, or drink a big cold drink with ice cubes, and they've all helped. Sometimes nothing helps but waiting it out and resting. It's unfortunately part of the post-POTS "me".

Has anyone considered, including the original poster, that HYPERthyroidism (over active thyroid) may play a role?

Why not try another brand?

Great to hear from you! May you continue to be blessed with improvement.

I feel that a 5 month trial of Remeron in 2001, given for sleep disturbance, set me "off" into POTS land. I also am extremely sensitive to chemicals, smells and meds, so maybe my nervous system "went off" because of the Remeron. I cannot prove it, though. To counteract my imbalanced nervous system, I find a .5 mg pill of klonopin very useful. This is a "depressant" and in the benzodiazepine family of meds. I might take .5 mg 2 X/week at night. (When I took it every day, it stopped having a good effect after a month.) To help me feel more "alive" when I feel unusually dead, I'll eat some chocolate, or down some Coca Cola. Both have caffeine, a stimulant. Other than the above, I have coping mechanisms for heat and for other situations that I have learned from this forum over the years.

Over the years, I've come down to: oatmeal with dried cranberries, cut up dates, and 2 prunes. This is a relatively minor amount of "fruit" sugar. No pancakes, syrup, caffeine, orange juice, french toast. I also eat cooked egg whites for protein. This works for me. I have to be especially careful what I ingest for "breaking the fast", as I overreact to processed, and sugary foods. I'm okay with the minor amount of fruit in my cereal, though. I do not use white sugar or any sweeteners in the morning.

Yes, the daily push to get up. The old ANS has trouble adjusting from one state to another (wake sleep or sleep wake). But, I must add, that a few years back the endocrinologist increased my dose of thyroid hormone, and I do not feel quite as dead...I was a bit hypothyroid. I suspect this is the way I will typically feel, going forward. If I must be somewhere, I push. I have noticed that I can help myself somewhat during episodes in which I become exceptionally weak and tired by ingesting caffeine in one form or another...chocolate, coca cola. It works for me because I do not do it all the time. I use it as a stimulant. I do not use this in the AM, though, only during bad episodes during the day. Conversely, when I'm "wired but tired" and cannot relax enough to sleep, I'll pop a small klonopin (benzodiazepine). I don't take them every day either, so they work for me.