kayjay

I take 20mg of nadolol once a day.

Lyrica really helped me with pain. I asked my doctor about Topamax and he told me that they call it "Dopamax"... with my brain fog I am not interested.

Like Alex - I found it to be more of a band aid also. Very temporary. Memory loss is a common side effect. For most it is very sedating at first. It also became less effective for me over time ( three years ). Additionally syncope was more of an issue with the benzo drugs. I passed out and broke my nose. I have hyper pots so thankfully passing out is not usually a problem for me, but on benzo's it became more common.

I was on Ativan. I wouldn't take it again. I was also given it before I was diagnosed. For some time I thought that the klonopin helped ( as mentioned above it is a longer acting benzo). They interfere with memory. You may want to google it before you take it. It certainly is not a "fix" and my neurologist from the Mayo clinic in Rochester Mn. told me that he would not prescribe a benzo to POTS patients because they can make pots worse. Once I got on them, no one wanted me to go though the withdraw. I took myself off on May 17th.

Any of you have hyper pots? i couldn't talk my doctor into these drugs but i still want to try!

I take an SNRI and wouldn't say my pots is under control. I have made out fine with shorter fights. I wear knee high compression stockings and spanks- more comfortable than full compression and better for the restroom. I have asked for bulkhead seats. You may be able to get one with a dr's note. This gives you the ability to put your feet up on the wall. I have worn my heart rate monitor on flights and it is pretty creepy how my heart rate jumps during take off. Once the plane levels out - maybe too because they pressurize the cabin, I am fine. I think it is important not to worry about it and to not over do it before you get on the plane. It also is important to stay hydrated even though airplane bathrooms are yucky!

About shoes, I also can wear shoes with rocker bottoms. I just gave away my last pair of very flat shoes - birkenstocks. Anything with a little instability seems to keep my leg muscles more active. I can wear FitFlops but MBTS are the best for me. Very pricey though. Because do love shoes- wedges are my best friend because they don't have to be ugly!

Like Dani I have had this with high adrenalin. I am a very mild mannered person by nature but once kicked a trashcan in anger! Crazy! I had to hammer out the dent. Being on a beta blocker has helped with this. I know high blood pressure is considered "silent" but I personally can feel the swings. It was really helpful for me to know that this was a physical problem. Just wanted you to know that you are not alone. I knew that the anger I felt was disproportionate to the situation. It was helpful to explain to my children that I felt cranky, but it was the pots causing the feelings. PS if you kick a trashcan, choose plastic not stainless steel!

Arizona girl, Isn't it weird to look back on your life when you think of yourself as athletic? I played field hockey, la cross, and tennis. I hated when we ran stairs ( I MEAN HATED). I quit playing basketball in high school. I told my mother that I couldn't run inside in the gym. Now I look back and realize it was the drills of running and bending over to tag the lines on the floor. Other sports I played really required running forward and upright. Before I was diagnosed I was trying to fix my shortness of breath by doing a "shred" dvd that included jumping jacks! I couldn't figure out how I could be "fit' and not be able to do jump jacks! DUH.. So for any former Jocks (he-he), if you are like me, you may do well to try to keep your muscles strong and get your cardio from "real life" activities. With my stubborn personality I have caused myself setbacks and sickness but pushing myself to hard. I cried when I gave away my tennis equipment and my roller blades but I feel pretty pleased with myself when I can take care of my family!

My cardiologist told me to focus on symptoms, not my heart rate. It is expected that my heart rate will "bounce around". I know that my heart is healthy and she told me that as long as my heart rate comes back down when resting I should be fine. I do have to be careful to not pass out during exercising. If you feel ok you may want to consider taking your heart rate after you "cool down" from exercising. Watching your heart rate during exercise can be stressful.

I have had pots for at least 13 years. I don't want people to be discouraged if exercise does not help them. Exercise is good for my body and mind but not good for my POTS. I have found that swimming and pilates are what I best tolerate. At this point I have resigned myself that this is a lifelong condition for me. I avoid cardio as much as possible and until last year was working with a trainer for strength training. Now I mostly just swim. Exercise ( really of any kind except perhaps yoga ) makes me feel better and worse at the same time. I will not ever give it up willingly but i go out of my way to avoid cardio ( unless I decide to shower or brush my teeth lol). For anyone who can exercise I think it is good for you but no matter how fit I am... I still have all of my pots symptoms and sometimes exercise is a real trigger for me. ( still gonna do it though ). I think strong leg and abs are helpful, but I get enough cardio going to the market.

Song Canary, I see that you have food allergies. You may want to reconsider going gluten free. Allergies are an immune system issue... so is celiac. I am not going to have my daughter tested although some in the medical profession would encourage me to. She feels sick when she eats it. For me that is proof enough. She was sick about 2 weeks ago and we realized that she had been eating Twizzlers (yes they have gluten in them!). Being careful again with her diet, she just informed me a few days ago that she feels great and doesn't want to eat gluten anymore!

Yes you can have false negatives. My daughter is gluten intolerant. You cannot get celiac unless you have the gene for it, eat gluten, and then something triggers the disease. It is autoimmune. I have the genes for both gluten intolerance as well as the gene for celiac. When my daughter started having tummy trouble I took her off gluten. She feels much better. I personally think the testing has a long way to go. There is no medication for celiac, the "cure" is removing gluten from your diet. Because so much research today is driven by where drug company can make a profit you can pay for better out of pocket testing. Entrol lab ( if I spelled it correctly) does independent testing. I believe that my genetic testing was done though the red cross. Problems with gluten are on the rise and often misdiagnosed as IBS. I have been gluten free for over 2 years and almost never have tummy trouble. It can be hard to figure out that gluten is a problem if you have celiac disease. If I get gluten I am generally not sick for 2 or 3 days. Not eating gluten has been the single most helpful thing for my health. The first time I spoke with my doctor about not eating gluten, he said if you feel better not eating it... don't eat it! I found Gluten Free for Dummies by Dana Korn very helpful. I also read Elisabeth Hasslebeck's book. It seems like a daunting task to cut out gluten, but once you get the hang of it it is really easy. I cheated a few times when I started, but now it is so helpful I don't want to eat food that makes me feel bad. In our house I but "normal" gluten free food. We have two pantry closets. My daughter and I just don't open the gluten pantry. Some trial and error is needed to find good bread etc. If you ever want to suggestions PM me. Some food labeled "gluten free" tastes like bird seed but a lot of is is really good. ( like udi's bread).

Could be a sign of a gluten problem.

I drink emergen -c.

Thanks. My doctor hesitated to give it to me, but you guys know how bad migraines can get! I am going to try it next time I am really bad and see what happens. New meds worry me and when I realized that my doctor was really thinking about what to give me I read the warnings that came with it. BAD IDEA!

Something to consider, there is an adjustment period for many people on betas. It took me about a month to adapt to mine. I had resting heart rates in the high 30's when I first began. Now my resting heart rate is normal and I know that nadolol is protecting my heart. My standing heart rate before was usually at least 175. Now it is in the 120's.

I should also add that the research on salt as a cause of high blood pressure is questionable. I have a child with high blood pressure and his doctor at Children's Hospital of Philadelphia told me that salt is not an issue for many people. I wonder if you would do better adding sea salt to your food and drinks instead of taking a pill. Tummy trouble is not helpful when you are trying maintain your electrolyte levels.

It may be wise to have your sodium levels checked and then decide what to do. Mine was low and I was told that I was drinking too much plain water. I drink v8 now. A certain amount may help you hold onto water. I always seem to feel better when my wedding ring is tight. If it is slipping off of my finger I increase my salt.

Not sure about other places, but Mayo did not do a "standing" plasma test. I would think for anyone with pots the stress of a tilt table would increase the number of people labeled as "Hyper". I had 3 or 4 24 hr urine collections. My plasma test was not done on the tilt. I was resting in quiet for some time.( I think it was 30 min) A baseline was taken. Then I was told to walk around or sit in the waiting room for either 5 or 10 min (don't remember). Then my second blood draw was taken. I didn't take the poll.

Bella, hope you are doing better. If anyone puts bracelets etc together I know my children would want to wear them, I have seen mixed colors - like purple and white swirled together. Maybe those who run this site could choose something to standardize things.

If you have taken Imitrex will you please tell me how you made out? I have migraines but am worried about taking another medication. THANK YOU!

20mg of nadolol at bedtime. My standing heart rate was in the 170's. When I first started taking it my hr would also drop down into the 40's but not now. I think it took me a few months to get used to it but a lot of the side effects have gone away.

Blue, I have accepted the pots - maybe because I have had it for at least 13 years? I still get upset every time I go to the doctor. I think I get my hopes up that he can offer me something new and then I am sad. I have a hard time with staying off of gluten- I have for 2 years. Since I feel crappy with the POTS and miss eating good pizza I start thinking that it I should just eat it even though I know I shouldn't I had a friend who asked me how I deal with POTS. I told her that I cannot think ahead too far. If it really sunk in that I will feel like I have the flu for the rest of my life - I am not sure I could mentally handle that. HMMM maybe I am in denial?

I have the same problem. My 24 hr bp monitor did show a drop in bp at night. I take sleeping meds and try to ignore them. I am also on a beta blocker.