futurehope

I always have POTS, and I always push myself. In my experience, I do better if I push myself, but there is one caveat.....by pushing myself, I may be symptomatic for a few hours to a few weeks to a few months, but....eventually, my body adjusts. I just have to live through feeling lousy. I feel worse if I don't push myself. I want to sit/lay around and do nothing, because that "feels" better, but I actually do better in the longrun if I push myself. The effect is not immediate, but the improvement eventually comes. If I get sick, I lose the improvements I've gained and it will take months to get them back, so I try to avoid illness (if possible):I'm a bit of a fanatic about avoiding germs because of the negative effect of illness and medications. PUSH is my middle name. I feel lousy for it, but I eventually am able to tolerate more. The less I do (the less I push through the bad feelings), the less I can do. It is a necessity that I push, because that is the only way for me. I must do the best I can with what I have been given, and if that means using every available means to help myself, I will use those means and push. I'm talking about different situations like heat, prolonged need to stand, whatever normal people do without preplanning. I preplan, then I push. Not easy, but necessary for me in order to live my life. PRAY PREPARE PUSH

Notgivinup, Aren't there some good things about milk, like calcium content, and salt? I thought someone mentioned milk has some salt? It also has Vitamin D. Please, if you do give it up, take a calcium supplement. That's my suggestion. I have "been there, done that" with many different alternative diets, and have decided for myself what my diet will be.

I tried kava kava a long time ago, so I can't remember exactly what happened, but..... I will never take it again. Bad news. I cannot take Melatonin either. We use Melatonin in the US for aiding in sleep.

TXPOTS, If it's the jogging you miss, can't you join a fitness club that has air conditioning, and jog on their treadmills? Or, invest in one of your own treadmills? If you miss being outdoors, obviously, the only option for you is if you could tolerate the temperature. Have you considered hosing yourself down, and remaining wet? It really helps keep the body temperature down.

Mack's Mom, So, did your son's result indicate "muscular" or "neural" or both? He takes something for this, right?

I have chronic microscopic blood in my urine. It's been many, many years. I'm assuming I have it as a result of having interstitial cystitis, a chronic bladder inflammation. I am currently under the care of a urologist who is well-versed in this condition. Not all urologists are. But, my urologist did say that blood in the urine can be a marker for cancer, and since I have it all the time, the only way to rule it out, in my case, is to go inside the bladder and do a biopsy. Now, if I can see the blood, there is a good chance that I have an infection. so, normally, for me, it is microscopic.

Kujiforo, Are you taking anything or doing anything to keep your blood pressure up? It sounds like it may be getting too low at times?

Of course, I do not know exactly why you're feel poorly. Rest assured, heartrate/blood pressure can be fine, and we can still feel bad. There are very many different reasons why you might be feeling poorly, some of which may have nothing at all to do with POTS, and some that do. Nothing seems to stay the same for long, so I hope your symptoms improve soon.

Hey, POTSGIRL, glad you posted about AZ. I will be flying to Phoenix next Saturday, then on to Maricopa with a rental car, with (if I am up to it), a visit to the Arizona-Sonoma Desert Museum in Tucson on May 23rd. I will definitely have my water (always do), but I will also have my squirt-bottle and umbrella. Squirting myself with water is a must. I know it's asking a lot of myself to travel and do.......but, as usual, I'm pushing and doing. I thought I'd try... Just wanted to let you know I'd be in the area. I'll be in Maricopa for a week. Maybe we could talk? Sorry for hijacking the thread. I agree with Ramakentesh. I think the lack of oxygen can cause all kinds of strange, uncomfortable sensations. And I always have lack of oxygen when vertical. I do not have "remissions". The malfunctioning orthostatic intolerance issue, is always present. There are some days where I can tolerate more, but the underlying issue is always present. If I want to decrease my tolerance to being vertical I can: be under additional stress be hungry be thirsty be sleep deprived be sick be trying a new medicine that affects the nervous system (I hated Neurontin...made me so bad) be hypothyroid bend over too much be out in the heat too long overextend myself quit exercising all together I can go on and on. I've had to adjust my life, of course.

Firewatcher, So, you used to take weekly breaks from your BB? But then you stopped getting allergy shots, so there was no need for breaks? IOW, you have now been taking the BB continuously, with no break? Just trying to understand. If I'm understanding you correctly, you are now taking bb's continuously and this is not what you used to do?

Sue1234, I so agree with you. Colonoscopy, endoscopy...the $$$ makers. Anything outside the usual 15 minute visit, and forget it. The few times I was helped a little bit is when I suggested a possibility to the doctor. Other than me instigating, I suspect the doctor is not interested. I have also been diagnosed with Small Intestine Bacterial Overgrowth, SIBO, which can cause bloating/cramps. I can take an antibiotic every three months for 1 week to keep this in check. I am the one that had suggested to my GI doc that my autonomic nervous system malfunctions, so I asked the doc if it could be possible that my intestinal transit time is affected? He got an "aha" moment, and tested me for SIBO. I was positive. But, after reading your post, I'm thinking the bloat can be because of a lack of enzymes (maybe due to ANS malfunction?), not SIBO. I would LOVE to try your enzymes, but I know ahead of time that I would suffer painful heartburn from taking them. I wish I were wrong, but they are hard on my stomach. That's why the doc tried me on the prescription Creon (which did nothing, but at least did not cause heartburn).

That is so exciting! A while back a GI doc of my gave me a prescription for pancreatic enzymes. It didn't do anything positive, and unfortunately, was causing loose stools for me. BTW, which ones are you using, and how often? You know, there must be some blood test that shows your level of pancreatic enzymes, whether too low or too high?

Maybe it's because I survived a cancer diagnosis at 20 yo, and I'm currently 58 yo, but I honestly do not have any fear around this illness at all. I figure we all die of something, so I really don't think about it. And I'm kind of glad the doctors do not know enough to give us a prognosis, because many times a prognosis will set up a false expectation. I just "plug away", to the best of my ability, and I'm thankful for the body parts that work okay.

Thankful said: My mom has had to have her gallbladder out because of stones caused by the octreotide. Another main side effect is insulin resistance This is one of the reasons I do not ask for this drug. If the quality of my life warrented a try, and I were willing to have potential side effects, and willing to spend the money, I would try this drug.

It's actually not a joke, and endocrinology is the specialty that diagnoses and treats glandular problems, as in adrenals. Let us know if you decide to investigate further.

I'm no doctor so take what I am saying with a grain of salt. You need to have your adrenal hormone output tested. Maybe you need supplementation, especially since you are crashing after stressors? Your reaction to stressors is telling me you do not have enough reserves to keep pushing like this. You might wind up in a crisis that your body cannot handle.

I don't mean to sound stupid, but.... I suppose a lactate buildup in the brain (if orthostatically intolerant like me), can cause symptoms? I must say, I am very aware of symptoms when my body is not adjusting to gravity, one of which is a specific type of headache. I've been known to ignore this initial headache, to my detriment. I will go into a full-blown migraine because of my stubborness and refusing to recline. Increased lactate in the brain. What do you suppose the symptoms would be because of the build-up? Rhetorical question, as I'm sure no one knows.

I haven't read this all yet, but wanted to chime in. I found Klonopin, by far, the most helpful of any medicine I've tried for POTS.

I agree with TXPOTS. The only way you could know if your horrible surges are returning, or of it is klonopin withdrawal, is to wait and see. As TXPOTS said, the withdrawal can last for days. Only you, yourself, can find out if klonopin was worthwhile. In my case, after a while, I would need a higher dose of Klonopin to get the same effect, and I decided I did not want to do that. Also, I did not like the memory issues and weight gain that I had while on it. Other than that, it was a helpful medicine, probably the only one that I've tried that had a benefit. So, to answer your question, we cannot really know the answer to your question.....

I agree with Tearose.

I was going to post the exact thing as Amber, but did not want to give the impression that I am diagnosing you. Obviously, we cannot diagnose. We can only suggest ideas. I hope someone "gets to the bottom of" your leg problem to your satisfaction.

I suspect it is a money issue, meaning, "not cost effective" to treat patients with POTS. It's not a money maker:it's a money drainer. That's my uneducated guess. I suspect many of us might wind up in the same boat. I'm sorry to hear about this. I'm bracing for a change in the quality of my healthcare as well.

This sounds like a great idea...so you wear this over a tee shirt? Is it the adjustable cool vest that you all are talking about? There is a set of additional cool packs you can buy, right? TIA

lmt033167, Obviously, in your situation, your spouse has seen you when you were fine. I'm in the same boat. I did quite a bit of stuff for years before POTS. My husband does not totally get it, but he's better than he used to be. It took years. Maybe, if he agrees to go to therapy with you a few times, he'll understand your struggles better?

lmt033167, If I were you, I would not put too much time and effort into "trying to get others to understand". They cannot fully understand. Now, I do not mean your problem should remain a secret. You can state what your needs are. You can request prayer. You should seek the best medical opinions possible within your budget. You should learn all you can about what to expect and how to help yourself. Truly, suffering is an alone experience. Would you really want someone else to suffer with you in empathy? Not really. But, you do need them to take you seriously when you state that you need help, or that you cannot do something. Considering that your spouse has seen you burn the candles at both ends, it may take time for him to realize you are not the same. It's a major adjustment for him as well as for you. All you can do is be honest, without complaining, and wait for him to adjust. You may also want to take him along to doctors visits, or show him results of medical tests. But, really, he cannot fully comprehend your day to day struggles, especially since he remembers how you used to be. He needs time. That's my opinion. You need time to adjust to your new medical condition. Others need time to adjust as well.