kayjay

I took this test in grad school and the class joke was that I had no personality.... My scores were really low. The big change for me has been physical. I used to be VERY active. Thanks for the link. I am going to take it again now that I am a grown up. So fun and correct even about my career choices! INFJ

I also have a 13 year old girl who worries about me. I think a lot of good suggestions are mentioned above. Two things that I would add is that I try to keep her life as normal as possible... meaning I try to keep the focus off of my illness ( hard to do sometimes). She is old enough to manage when she has friends over and I can lay down and stay in my room. She does understand what is wrong with me but I make sure she knows that I am dealing with it and I have accepted it. There are worse things and I am so glad I am alive to be here for my children. Also bad things can develop character. My children are less judgmental, less selfish, and kinder than most children. Although I wish they had a healthy mom, I realize that they are going to learn from this challenge. I discourage worrying by telling my children that it is a waste of energy. You know your daughter best regarding therapy. My daughter was not interested. She does talk to her friends about how she feels. She also has a friend who has a sick mom. This seems to help her. best wishes and be encouraged that your daughter is such a loving person.

Love it but I have to get out very slowly! I use the ramp and sit. Also I take water exercise classes. I am not sure how I would do with laps. The classes have some light cardio but they are good for strength. I was fit when i got pots. Exercise in some way is good for our bodies, but I also know that it is not a "cure" for me. It does take a lot of effort but it has been worth it for me. Additionally the water temp. of the Y is pretty good for me. Not too hot but not freezing cold. Something many of us have to consider is temp. I hope you give it a try. Just don't be in a hurry.

Alyssa, I do not wear a helmet and have broken my nose. I am not one to pass out but i did in the middle of the night at home. I got many rude comments with my black eyes and again when I had surgery to reconstruct my septum. I even got comments about my "nose job!". I don't know if this helps you but rude people will be rude about anything. If you can protect yourself from injury you can have people talk about your "hat" instead of a bruise or worse. Some people are just rude but remember that if they were happy people they would not feel the need to be mean. Happy people are not mean. Really we should feel sorry for jerks.... after we smack them. lol! Good for you for taking care of yourself!

When others ask you where you found that blue lipstick you are wearing. When you can see the stars every time you take a shower - anytime of day, inside. When you have all the "fun" of being drunk at every social event... even in Church. When you wear your Pjs so often your children think you should go on "What Not To Wear" When going to the market really does feel like climbing Mt. Everest. When you can get the "sea sick" experience from the comfort of your own bed.

Ginger, for me the best thing has been water fitness classes. If I were a mermaid I'd feel great. You can wear a water belt and I suggest getting out of the pool VERY slowly. I am always sad to get out because I feel almost smart when I am chest deep in water! increasing leg strength is good for us so anything you can do and feel comfortable with is a good idea.

Hope you are out of this hole soon. I think a lot of us understand how hard this is for you. Just a thought about the obvious - have you had your potassium levels checked recently? I had a huge flare when my salt/potassium got really out of whack. I was told by my doctor at Mayo to have it checked ( 24 urine) in the future. I lost a ton of weight very quickly and was urinating constantly. Might be worth checking your current levels if you haven't recently. Hope you are on the upswing soon. Don't lose hope!

I forgot to mention that for me improvement has been slow. make sure to give yourself time to heal before you rule out going gluten free long term. Now if i eat gluten I may have belly pain a few hours later but tend to have other issues 3 days after my mess up. It helps to forgive yourself if you slip up. I ate french bread 2 months ago and was so angry with myself. like most things it is best to let it go and start over. I try to think of each day as a new start to eating well for my body. LOTS of people have problems with gluten so it may be a great place to start healing.

I have been gluten free for almost 2 years and my POTS has greatly improved. I was diagnosed with IBS and believe the problem was gluten. If you feel better off of it I would suggest you stay off of it regardless of what any blood test says. Staying off gluten has made my fibro pain better as well as digestive issues. I find with me that I have to have a 100% commitment to get the best results. I used to be too thin and gained weight on a beta blocker. It is a hard diet sometimes but I take it day by day. I don't bake things I can't eat and I try to focus on what I can eat. You may want blood work to see if you have any vitamin / mineral needs. My hair falls out much less and my nails are growing better- other signs of better nutrition absorption.

I don't have any advice about the medication but I wanted to let you know that I had 2 healthy children with undiagnosed POTS. I did have to go on bed rest at the very end... I had some high BP readings and this was 14 years ago. I think you are ahead of the game knowing you have POTS. If you tend to have low BP, you may not need the meds later in your pregnancy. I hope you have a good doctor. Congrats!

I asked this question when I was at the mayo clinic. They felt that it was not likely. I think I have this problem every time I have a an adrenal surge. My hormones and thyroid are fine, I stopped eating gluten about 2 years ago and most of my hair has grown back.

I don't recall my blood pressure changes and I was on a beta blocker up to the day before my tilt table test. My heart rate increased over 90 beats. At home it has been as low as just over 40 bpm and as high as 178 sitting to standing. Much more stable now after a few years of treatment. now I swing from the 60's to usually under 100 upon standing.

High heart rates are not dangerous if they come down. I found out when I was in the hospital that even brushing my teeth my hr was over 170. Over time your heart can become enlarged from working too hard. even after at least 13 years of this ( I think maybe even since I was a teen) my heart is healthy. It will beat too hard and lots of "skippy beats" but it usually is low when I am laying down ( adrenal surges aside lol). Generally speaking the younger you are, the more your heart can tolerate fast beats.

I do almost all of the above- no alpha blocker for me anymore though Just a beta blocker. When I get really bad I drink pedialyte (spelling) and try to wait it out. I know how horrible this feels. ERput me on ativan also. just made me feel loopy on top of everything else. I take nadolol and Klonopin. It took a long time but now my surges happen less.

Ram.. thanks but I will go with what my doctor says... He suspects that my "trigger" if you will... was autoimmune. Since his specialty is POTS and he is an expert at The Mayo Clinic in Rocester MN, where much of dysautonomia testing was developed, I trust his judgement... but thanks for trying to help. Also I DO have postural HYPERtension. Annaliese, with all of the information and misinformation that gets swapped around on the internet, I would find a good doctor and follow his suggestions. After all that many of us have been though we may feel like MD's but we are not. Good luck! Also SNRI's do not contain norepiniphrine and Cymbalta is works differently than Wellbutrin. I am not able to take Wellbutrin.

I switched from Metoprolol to nadolol. you may do better on a different beta blocker or a lower dose. I think weight gain is common with beta blockers and they can make you sleepy.

I have HYPER POTS. I take Cymbalta SNRI and a Beta Blocker. Lexapro was awful for me. Mayo clinic believes that my hyper pots is autoimmune. I know that I can't have epinephine ( sorry for the spelling ) or stimulants so the way Cymbalta works is unknown to me. I was afraid to take it at first but again lexapro was horrible for me. Not helpful and all side effects.

I am in PA so the water is heated but not too warm. I feel cold when I get in ( I think it is 80 or 82 ) and warm up as I move around.

I have nausea right now. I am gluten free and for me nausea and vertigo are part of my POTS. Could you have migraines? they can be silent.. does being still help you? I usually don't actually vomit unless I am in the car or bending a lot. Sorry to say that for me this is just a "normal" part of my dysautnomia. I do not have leg jerking. Maybe restless leg? there may be others that have this... hope you feel better soon.

If your heart is healthy even "normal" people can tolerate have high heart rates. i asked my cardiologist for a range. She basically told me that even if my heart rate pops up to 200... ( ugg yes it has) I am safe as long as it doesn't stay high. It is really scary and I used to be obsessive about wearing my heart rate monitor. What has really helped me is pool exercise. i joined the ymca indoor pool and have natural compression! I can do so much more in the water safely. I have to get out very gradually and carefully though. Although I am always the youngest person in every class, many people have health issues ( MS, knee, back etc.) It is a good workout for me and I hate to get out of the water because I feel so good in it... even can do "cardio". I guess mermaids don't get pots

Thanks for sharing! I am so very happy for you. For me the onset of POT was slow and I keep telling myself that recovery will be slow.... it's been more then 13 years for me but I am doing better. have fun and stay hydrated!... if you can play tennis.. play a game for me. I miss it

One other thing I thought to mention is that any ADD med ( ritalin, etc.) is a bad idea for most with Hyper POTS. I actually asked for it and was told that I couldn't have it ( I wanted something for fatigue). I know nothing about Wellbutrion, but I should have mentioned that Johns Hopkins diagnosed me with pheochomacytoma and sent me to NIH. NO TUMOR! I have had bad drug reactions, but not with Cymbalta. The excess catecholomines that my body produces is a response to the pots. 3 or 4 positive urine tests for pheo and Mayo and Hopkins did the plasma tests which were very high. Cymbalta has helped me with pain and I take it along with a beta blocker. The bb's block some of what your adrenal glands do. You should definitely consider the combination of medications you take. I cannot even tolerate coffee ( I miss it ) but I think someone would have to rip my cymbalta from my cold dead hands before I would give it up I agree completely with the other posters that it is best to start very slowly on a very low dose. On 90mgs I started to get some relief! best of luck to you

I also should add that when this happens I lay or sit and drink something salty like V8. It does pass and for me this is a hyper pots thing. feels horrible though.

yes. This was a major problem for me before I was diagnosed. Treatment overall has helped. I think my beta blocker helps the most. Horrible feeling. I think compression has helped me as well. My mom told me that when I was having one of these episodes my lips would even go pale. hope you find something that helps.

I would say that I am very hyper POTS- was misdiagnosed with a Pheo. My Plasma and Urine levels are very high. with that said...Lexapro did nothing for me and Mayo clinic ( rochester ) knowing how high my plasma levels are put me on cymbalta... much better. Some things with us are very counter-intuitive. For example you would think that I should avoid birth control pills because they can raise your blood pressure, but I am on them and they have helped as well. Also salt helps me. You have choose for yourself but if you do try a SNRI give it time to work.