kayjay

I have horrible fatigue anyway. It is a pretty safe drug for most. Filtered out though the kidneys so it does not effect your liver. I am fearful of meds as well. I have filled several rx's and never taken them. It helped me to take the Nadolol at bedtime. It has been less than 2 weeks since i stared taking it 2 times a day. I am doing a bit better on the 2 times a day... but I was on one a day for a few years!

I have been on it for almost three years. It does take a while to get over side effects ( for me) but it has been the best beta blocker I have been on. I was taking 20mg once a day but recently increased to 20mgs twice a day. It really helps me with adrenal surges as well as my bp and heart rate. Please give yourself time to adjust. I wish I could give you better information about how long it took for me not to notice the side effects. Overall I would say that for my Hyper pots, this is the most important med that I take.

I HATE STAIRS!!! for me it is not deconditioning. Even fit I had major problems with stairs and jumping jacks!

I have plain 'ole shortness of breath. Walking up stairs to waking up at night gasping for air. I was told years ago that it was "reactive airway disease". For me it is just the dysautonomia. With treating my pots my breathing is better. I was on asthma meds years ago and looking back they really didn't help.

Even if this works, for me disrupting my sleep is not worth it. I have trouble with sleep and started taking ambiem a few moths ago. If I could sleep with the bed elevated I would give it a go. I am always careful to drink (V8 or an emergen c) before get out of bed in the am. If i get up at night to use the loo I always have a glass of water. Staying hydrated at night seems to be someone helpful for me.

I always blamed my hair loss on my POTS. I went of gluten and it is growing back pretty well. I also have had to cut my fingernails more. Not to be graphic but if you are having any gi issues, your body may not be absorbing what you need to have healthy hair.

Every time I have had surgery, the doctors are surprised at how much it takes to "knock" me out. I don't think it has anything to do with my POTS. My father is the same way and he is very healthy. I have had surgery on and off of beta blockers... and still no difference. I

jangle, I think your message box might be full. I just tried to send you a pm and it wouldn't go though.

You have to taper off of betas because they can cause a "rebound effect". I take nadolol which is similar in action but longer acting and it is filtered though the kidneys not metabolized by the liver.

Please consider less water and more things like v8 and nuun. or even gatoraide. mayo clinic tole me I drank too much plain water. You need electrolytes. Water will flush them out. My hubby has always called me a "big drinker" lol... soup and salted drinks have helped me.

Broke my nose!

CFmartin, Beta blockers are really the most helpful for most truely hyper pots people. The block adrenaline and other stress hormones. Requires somewhat different treatment. High blood pressure ( at rest ) was one of the first clues to doctors that something was wrong with me. I would not be prescribed many of the medications that hypo pots people can take. With a surge, your adrenal hormones can be high regardless... Fight or Flight response. With my Hyper POTS, those hormones are elevated all of the time. That is why the standard testing compares plasma levels at rest with levels after a few min. of walking. Also my in my experience klonopin acts more to relax you mentally- for me it does not effect my adrenaline levels but makes me feel more calm.

I wonder it fatigue is age related at all. I used to be able to do more when I was in my 20's even though i was sick with POTS. In my 30's I can't believe how much time I have to spend resting. I have every symptom listed but the fatigue is crushing.

Mayo determines HYPER pots based on plasma NE levels. They have you lie down quietly for some time -check your levels... have you walk around for a few ( maybe 10min.) and then check again. Sweating can be effected by many factors including medication. beta bockers and SSRI to name two. I tend to go with what mayo says because they developed most of the diagnostic tests that are used today. If you have been misdiagnosed for Pheochomacytoma though 24 hour urine i would think it likely that you are Hyper POTS. 9 years ago Johns Hopkins was sure that I had this tumor ( I don't) but my urine catecholomines were very high.

I was diagnosed with autoimmune hyper pots. I am on nadolol as a beta blocker. I will pass out although this is more likely to happen when exercising or when it is hot. Compression has helped me as well as drinking V8 before I get out of bed. I also take klonopin and cymbalta. I had horrible surges and beta blockers can really help with that. In addition, getting some sleep at night is important. I am currently taking a sleeping aid. I think regardless of your "type" of pots some trial and error is needed to find out what will help you. The beta blocker has helped keep my hr at a more reasonable level. For me it has been helpful to give medications a fair trial to work. It took a few months before I noticed an improvement in some symptoms. Rama mentioned mestinon. I had too much GI trouble when I first took it but I am considering taking it again. Klonopin sometimes makes POTS worse for some but after stopping it a few times I am fairly confident that it helps me. It may be worth doing a 24 hr urine to check your sodium and potassium levels. When mine were low, my symptoms were much worse. Have hope. I have POTS and other autoimmune problems but it has been some time since I have had a horrible adrenal surge. I wish I could tell you definitively which drug gave me relief, but it may have been a combination of factors.

Standing exercises have not improved me. For example in my Pilates class we stand and stretch ( heart rate about 140-150). When we get into the mat exercises ( the 100 for example) my hr is usually in the 60's. I personally love exercise. I do cardio in the pool ( and have passed out ). For me I try to do anything I can fitness-wise however, for any strength training or if I am alone exercising upright ( standing )is more of a risk and no benefit. I do love my elliptical but I a rarely on it and have promised my husband I won't get on it when home alone. If you don't pass out and watch your heart rate I can't see the harm.

Dr. Levine has influenced others. I did not want to go back to the Mayo clinic because it is so far and expensive for me. I saw a cardio at Johns Hopkins who sees pots patients. His recommendation? Wanna guess? Dr. Levine's protocol. Like others I was fit when I got sick and still try to exercise 3-5 times a week. I want to keep my joint etc. healthy. For me, no actual improvement in my POTS symptoms with exercise. I just do what I can without passing out because I think moving is good for your body.

Rissy, I saw that you have a problem with Gluten. That can lead to absorption problems and issues with your teeth.

I was never a smoker and never lived with it. I have found that nicotine gum is very helpful for me if I need to drive or go somewhere. It is a little boost and seems to help get some blood to my brain. According to my testing I have autoimmune Hyper POTS. I think the gum gives a boost like coffee without the diuretic effect. It makes me a bit less foggy. I did see some research on nicotine being explored to help people with Parkinson's. Interesting because both are neuro problems.

Hope you feel better soon Rich. I have had pneumonia twice with pots but I was not diagnosed. My body temp is not normal- usually high and fevers are a challenge. Can you drink Pedialyte? When I was a mayo the neuro recommended it for me. I know with feeling awful it is hard to take care of yourself but make sure you keep your electrolytes up. "Normal" people need to to this when sick, so for POTSy people it is even more important. Sorry I can't help on the Tamiflu... I have never taken it. TAKE CARE!

Cotton flannel sheets work well for me because ( gross ) I sweat so much at night and they are a little absorbent. When I sleep in regular cotton sheets I wake up in a puddle ( super gross ). I also have a bamboo night gown and it helps too. I think trying to be comfortable at night is so important because we need some good quality sleep. most synthetics are my enemy. If you have trouble with cold feet I have found that smartwool socks are warm and not as itchy as regular wool.

Medication is a factor for many of us. Before I was diagnosed I could not keep weight on. On medications since my diagnosis I have gained weight.

I have trouble with both... But I get sicker with heat. I have never liked the cold and was a beach girl. If I am in the sun now I get very potsy. Interesting post.

I don't know what test ... sorry. I really was too sick to care at the time. Gluten was an afterthought. I had testing done though an independent lab and the American Red Cross does the genetic testing. The biopsy is currently the best way to get a diagnosis. These too can sometimes give a false negative.

I do better without gluten. My "IBS" was caused by gluten. I still have POTS related tummy trouble but going off of gluten has improved many symptoms for me. I also have less pain and headaches. Now that I no longer eat gluten I have no trouble with dairy. When you have a gluten problem it can make dairy a problem - but this gets better for most after your system heals. At first the gluten thing was hard- there is a learning curve and you miss some foods. Now I am no longer tempted when my family eats Dominoes!! When I think about it stomach problems were an issue for me when I first got sick. I also had trouble keeping weight on. You could try it for a few weeks and see if it helps you. Celiac can cause all kinds of problems. My initial test was also negative. True celiac is partially an inherited problem. I had genetic testing done. I have the gene for Celiac and one associated with gluten intolerance. I feel better off of gluten ... you may also! It has been less then 2 years for me but now if I eat gluten I know it