kayjay

I have had ear problems but they are more allergy related. I think i have similar eye problems. For me it is almost like they don't work together. not double vision exactly. I also limit my driving. My ears were checked and they are not the cause of my vertigo. I actually have really good balance when I am not dizzy!

Good poll thanks! I wish I could have voted for more than one....maybe in the future that mnoight be interesting.

Wait, maybe T is tea? If so gluten free helps a lot of people but it took about a month (i think) before things settled down for me.

Have you considered giving up gluten? It has resolved most of my digestion issues. Bloating would be caused by the toast in the BRAT diet. Gluten free seems difficult at first but for me now it is easy.

I am sorry that I have no wisdom to "fix" you or any real help to give. I do want you to know that I understand how you feel and hope that knowing that you are not alone in your grief may help lift you a little. A body that does not work often feels like a trap that you cannot get away from. i don't know if this makes sense but i often wish I could escape myself and get away from dysautonomia. Your positive way of lifting up others is something to be admired, but it is normal to feel sad, lonely, depressed and to feel sorry for yourself at times. Please don't think that you are having a "pity party". when I have had my worst POTS it has been after any medication that sets off adrenal surges. I would guess that a steriod would do that and it can also raise your blood pressure. It takes some time for those types of meds to get out of your system. I am sorry that I have no help for you during this darker time Issie, but you will be in my prayers ( I keep a list so I don't forget)! HUGS from a fellow potsie ((( ))))

just thought I would chime in here. I love to exercise. I loved playing sports, field hockey, tennis, lacrosse, pilates. The idea of a small heart is just stupid for many POTS people. I have had to have my heart checked for enlargement... and yes it was a little enlarged. The heart is a muscle and if it is overworked it can become too big. My POTS has nothing to do with being a lack of fitness although with POTS exercise can be very difficult. I try to exercise my body but keep my heart rate reasonable. If I want aerobic exercise I brush my teeth and take a shower without a break in between! With that said I think moving your body is good for everyone and when I am able I am in the pool, on a bike, or doing Pilates. ( I did give away my rollerblades and tennis gear though

I second Bunny and Reen. TTT is horrible. If you are not clearly horribly symptomatic during the test you may want to look into other possibilities.

Like Dani, I was also on meds and still had a very dramatic tilt test I just didn't take my beta blocker the morning of. Please check before you stop any medication. You may not need to and you don't want to put yourself in any danger!

I have been told I look grey. I start to lose my vision. I feel a rushing / draining from my head and my legs feel weak. I recently passed out and was in a pool when it started. I felt very foggy and felt I had to get out of the pool.

Pulp, funny to me that you mentioned your hands hurting. I have the vivid dreams but I usually enjoy them. I often dream that I am playing field hockey, running, or playing fun sports like I did as a child. My hands hurting has always been weird to me. My whole body will hurt but sometimes I will dream that I have been banging on a piano so hard that I injured myself. The lack of sleep thing is really hard and the sweating is gross and scary. I have ( only twice I think) completely lost my vision when I was laying in bed reading.... I'm guessing my pressure was low .

i will check that out.

@ Rich... I was sick for years and didn't know why. Very short of breath walking up stairs. I would wake up at night gasping for air and often just felt like I couldn't get enough air. I could barely talk on the phone without someone asking me if I had been running. I was diagnosed with asthma by 2 allergists ( and one other that said i had "reactive airway disease"). Finally a cardiologist sent me to a pulmonary doc who did extensive testing. He told me I did not have asthma and sent me to Johns Hopkins. The allergists put me on singular, advair, and gave me an inhaler. None of it helped although controlling allergies did give me some limited relief. Allergies can make POTS worse. I did not get any real breathing relief until I was on POTS meds. The beta blocker was first. An alpha/beta blocker combo was awful. I know everyone is different and a beta like metropolol is shorter acting than what I am currently on. I started with metropolol before I went to mayo clinic- they changed my meds to nadolol and the lexapro to cymbalta. Two other bits of info about me, i think my shortness of breath was always related to my high heart rate. i found out when I was hospitalized that my heart rate was over 170 just when I brushed my teeth ( nurses got very excited ). Also 4 times I tested positive for an adrenal gland tumor called Pheochomacytoma. Johns Hopkins sent me to the National Institutes of Heath and I do NOT have this tumor. I just was producing catechomlomines ( no idea how to spell this) at crazy high levels. It may be worth carefully trying a short acting beta if you thing your shortness of breath may be related to your heart rate or how your heart is beating. I was also put on Klonopin ( My doctor at mayo is going to switch this out). Some of these meds seem counter-intuitive, however if your lungs are healthy, your heart is healthy and POTS is the problem you may have some relief. Feel free to PM me and ask me whatever. I will never forget how scary it is to be gasping for air and I hope you find something that helps you!

I have endometerosis and had laproscopic surgery. I was on a beta blocker at the time. I have had surgery 3 times with pots and worried each time. No problems and one surgery was fairly long. I have not had anything removed but I was put on a hormone pill. it was called Kariva- some of the newer pills are horrible for us ( YAZ really made me sick), but maybe a pill that has been around longer would be safe and helpful for you. If you have a hysterectomy you may have to deal with menopause issues and you are quite young. I don't know your exact situation but I would be hesitant to have a hysterectomy. They removed a cyst from my ovary- went in though my belly button and got rid of all of the endo that they could. The doctor wanted to show me the pictures !!! gross. If you want to PM me feel free and I can tell you what I know ( not much )

Have you considered not eating gluten? I no longer have IBS because I stopped eating it and I used to be unable to gain weight. Hope you figure this out!

I do both - no sweating and too much. A tip for the cosmetic end of it... they make anti-persperants (not sure about my spelling) that you can apply at night that blocks the glands in your underarms. This does nothing at all for POTS but if you have a social event and worry about sweat showing you can use it for a few night beforehand. JUST keep in mind now the backs of your knees might sweat more lol. Also- my feet used to never sweat before I had POTS. Now sometimes they do and they get very cold. I discovered Smartwool socks help keep your feet warm and dry better than cotton.

Thanks for sharing about the cold sweats. I actually have a call into my doctor about this because I am doing better overall but the sleeping thing is horrible. My bp and heart rate gets really high and really low... it would make sense that it bottoms out when sleeping. Funny thing is I am not sure if I sweat when i have passed out during the day. I did have a 24 blood pressure cuff and is showed that my bp got really low once during the night. i don't have the numbers. I don't know what the solution could be.

Goodness, I just read your post more carefully. Shortness of breath was one of my worst problems. I was told I had asthma ( don't), I would often feel like I was going to suffocate. Beta blockers made this better for me ... not worse. I did see a pulmonary specialist and my lungs are fine. My breathing issues were Dysautonomia related. You may find that medication helps you. I am very sorry that you have this symptom. It is awful!

Beta blockers can block some of the adrenal surges- You can try a short acting one. Mayo clinic switched mine to nadolol ( a small dose 20 mgs) and once I got used to it it really helped me. Lexapro was horrible for me. Now I take cymbalta and seem to do ok with that. I completely relate to your story. I think many doctors either thought I was on street drugs or had an anxiety problem.... it is anxiety but it is caused by your body not a mental issue! I was given ativan in an ER once and when they realized it did nothing to lower my heart rate I ended up admitted to the hospital. If you do decide to give medication a try consider that it may take quite awhile for your body to adjust and you may want to start with a very low dose.

I second the pedialyte. It has really helped me. It tastes pretty nasty but with a straw and some ice it is doable. Feel better!

Mine has been about 200/170... but it has also been really low. When It was that high I went into the ER. I thought I was going to "kick the bucket" I do have a good cardiologist and she told me that your body can handle ups... but if it stays high it is dangerous. Healthy people have blood pressure swings also. Yours does not seem too high to me- I am happy when I have number like yours. My resting heart rate has been in the high 30's and also over 180. Very scary but again it doesn't stay that high or low. I have symptoms with blood pressure swings and sometimes when my blood pressure is good I feel horrible! It is really important if your bp is high that it lowers when you are sleeping. This is one of the reasons many of us have had a 24hr blood pressure cuff. Please don't worry about those numbers so much. The way we feel is sometimes so scary..... JOYS of POTS!

I was very sick when my children were babies. They are 20 months apart. I used to let them get in swimsuits and play in the tub with toys. I would lay on the floor. To save myself clean up i used to lay an old sheet on the kitchen floor ( under the table - or just on the floor if your table is nice). I would let them play with playdough and paint with watercolors. Anything you can do to save yourself clean up is helpful. In the winter I had outdoor toys inside. In a way two entertain each other... but it is really important that children learn to entertain themselves so please don't give yourself "mommy guilt" for not playing with your child all of the time. Many people have commented on how well adjusted my children are and I worried so much that they were missing out because I was sick so often. If your daughter learns to play alone she is learning good life skills and developing her imagination. Hope tomorrow is better for you! It does get easier on you physically as they get older because they do more for themselves.

I was "fired" via letter about 12 years ago. I was angry at the time but it really was a situation where the doctor did not know what to do and may have been worried about legal issues. Best wishes on finding someone better! My doctor now is interested in me as a patient and a person.

I often wake up in a sweat anytime i roll over. I was wondering if this happens to other H- POTS people. I get get some sleep now due to medication but sleeping has been a problem for me for the last 13 years. My doctor wants me to do a sleep study but I am not sure what the benefit would be for me. i don't snore and I don't have apnea. I would be very interested to know if others deal with night sweats. ( not hormone related ).

My Dad's cousin had ALS and I used to volunteer for hospice. When I get really frustrated by what I have medically, I often thank God for what I don't have and that I am alive. I have been sick for a long time and have been bedridden at times. I would be lying if I didn't have days ( weeks, years LOL) when I feel sorry for myself. I do know that some good things have happened in my life because of my illness. I look back and realized that my health issues as a teen were most likely POTS rearing its ugly head but I really became very sick in my twenties. It sounds lame but I really believe on some level everyone faces real hardships at some time or another. I think most days that God has allowed this burden in my life and as much as I wish it would go away, I am not sure that I would every trade my hardships for someone else's. One thing that helps me is to try and not think too far ahead. If I thought of being sick every day for the rest of my life I would be so sad! None of us knows what tomorrow will bring. Thanks for sharing! I think most of us relate to how you feel.

V8 before I get out bed.