kayjay

I have hyper pots with levels so high Johns hopkins misdiagnosed me with Pheochomacytoma. I am taking cymbalta and worried about it but I slowly worked my way up to 90 mgs. It has helped me much more than Lexapro. Not sure why but I had more side effects with lexapro and Lyrica. Also a beta blocker helps block some of what your adrenal glands release. I am also on nadolol. An alpha/beta blocker was horrible for me.

I have hyper pots. I tend to have high blood pressure but it will drop. I have passed out a few times this summer. Greying out is a problem I have had for a long time. My doctor just suggested I try Midrodine. Has anyone with Hyper pots - tendency for high bp had positive results? Thank you!

Just asked this question about another drug yesterday when I saw my cardio. She told me that the bio-availability can vary as much as %20. If you find a generic that works for you I would stick with that particular brand.

Thanks- KC no I haven't but I have a great diet and take vitamins. Lenna- I have been mostly gf for well over a year. Completely Gluten free since September of 2010. I now have better hair, nails and no more IBS.... no energy boost at all but thanks for the thought.

Hi all, I am looking for some help from you. I see my Doctor on Monday and I have Hyper pots. My exhaustion is a huge problem. I cannot work and drag myself around. I am lucky if I can get one thing done in a day. I have to nap and even though I have been diagnosed for almost 3 years my fatigue is no better. Do any of you with Hyper Pots take something for an energy boost? Please share with me what you took and how it worked for you. My bp is all over the place but I have been on a beta blocker for 3 years. My quality of life is not to great because I can hardly force myself out of bed. Thanks for any info you can give. i am really thankful!

Do any of you have hyper pots? My doc wouldn't give it to me but I sleep sooo much.

Me too.

Just wanted to add that I went gluten free in September and it becomes easier all of the time. I still have hyper pots and other problems but I think GF has really helped. It does take a while to get the hang of. Hope it helps you. After a few months you may notice you are a lot better.

I have these less now I think cause of my meds. I have had my heart take off while lying down and my vision has gone out. Scary but I used to have these surges every night. maybe you need more bb? The klonopin and Nadolol I take have made these rare for me.

I get sick if I wash my hair bent over. For me it is the POTS and the position my head is in as well as using my arms to scrub.

Mayo helped me more than anyone else could. I went to see Dr. Sandroni but saw Dr. Fealy. I have been twice and would recommend it to anyone. Mayo is ranked #1. I have also spent quite a bit of time at Johns Hopkins. Less than an hour from my house. It is ranked #2 and I hope to NEVER GO back there. I would rather make the long trip to Minn. If you want to message me please feel free. I will share with you everything I know. Best wishes but know that people travel from all of the world to go there. They developed most of the testing used to diagnose Dysautonomia at Mayo.

I have also gained weight after a lifetime of eating huge amounts of anything. I think my heart rate was so high I just burned though calories. I am now trying to eat semi- low carb and that seems to help. I am also gluten free but I found it easy to put on weight off of gluten because my body was better absorbing what I was eating. Right now I am just eating well and keeping my weight in check. It is really had to diet when you have bigger issues to deal with. before I was on any meds I realize now I was too thin ( I miss those days lol ). make sure that your expectations are reasonable. I loved being thin and feel "fat" at normal.

I do have pain with my pots. Flu like pain. Pain in my hands and feet. Cymbalta has helped with the pain. I also have less headaches now.

This is a pretty constant symptom for me. I have found that taking Klonopin before bed at least helps me sleep. I used to wake up a lot more during the night. I do not have a pheo although that was my fist diagnosis because my urine tests were positive mutiple times.

I spent a week at NIH. I was not properly diagnosed before I went there. (sent there by Johns Hopkins). I would NEVER go again. The best way to describe it is that you are a lab rat. My chart was kept locked up ( so I couldn't read it) at all times. Also I have no idea how much radiation ect. I was exposed to. They are about scientific research NOT patient care. The nurses i had were very nice and even got me a cake for my 30th birthday. It is not like a normal hospital. They have an agenda to do research on subjects. I would only go there as a very last resort. Feel free to write me if you have any questions. I should have gone to Mayo sooner. NIH is one of those this I wish I could "take back". But I really liked and trusted my doctor... so I went. Nothing good came out of it... all bad!

I do. I have had trouble reading due to the "blurry" thing. I have also lost my vision for brief periods. Additionally my pupils do not always work together. I went to the eye doctor and thankfully my eyes are ok. If you have any concerns at all you should have your eyes checked. All of my eye problems are disautonomia related but you should get them checked if it persists.

I have been completely g free since last September. It takes a long time ( for me anyway) but I am much better. If I ingest gluten now get really sick the next day. I am convinced that I never had "IBS" .. I think my problems have always been due to Gluten. Additionally, My hair and nails are now growing better. I was not absorbing all of the nutrition my body needed. In my opinion, it is worth a try but you have to go "whole hog" I was on and off gluten last summer, but really committing to it made the difference and the results take time. I vote to "go for it" no food is worth being sick!

Dani, it sounds like Mack's Mom is right. I have had severe allergic reactions- had an epi pen but you really can't use them with Beta blockers. For me they feel exactly like my POTS adrenal surges but my hands and feet itch first then the rest of my body. If you can't take benedryl... you could try claritin. I'm sorry.... they feel so bad. The first time this happened to me was the first and only time I had someone call 911. I thought I was going to die. You can go to a dermatologist and find out what meds you can take for hives. I once had hives for 2 weeks had had to take a combination of drugs. I think for me the allergy brought on a POTS surge. Feel better but be careful. You should consider having Benedryl on hand just in case.-

I have had this happen with hives! did your hands and feet itch?

I had low iron and other nutritional def. due to "IBS"... for me Gluten was the root problem.

I really have been bothered by this problem. i was sure that it must be related to my POTS but then I spoke to my doctor at mayo he didn't think it was related. I took myself off off gluten last September and my hair is growing back! Even my eyebrows and lashes are fuller. I am convinced that in my case the Gluten was the problem. If you have ever had IBS as a diagnosis... consider gluten. I no longer have IBS problems like I did. I am on a beta blocker and cymbalta... I was on lexapro. I hope this helps you. I know how upsetting it is to lose wads of hair... all over my pillow, the shower, basically all over the house.

I just wanted to add that i have never had any problems with my teeth and if my husband had not had fillings I would not have known what they were to even take this poll. I think all sorts of enviromental thinks can cause pots or make it worse.... I know that Black mold made me sicker as did Yaz birth control pills.

Not sure if this will be of any help but I wonder if my Dysautomia might be related to an undiagnosed problem with Gluten. Celiac can be related to lymphoma. I used to have high temps all the time ( not as high as your wife ) now my temp is low. Has she been checked for Lyme? My husband had it and it can cause many problems. I cannot say enough about mayo. I have been to Johns Hopkins and National Institutes of Health. Mayo in Rochester was the best place for me to get help. Best wishes to you and your family. I will be praying for you.

These can be awful! I used to wake up most nights soaking in sweat ect. I also had them during the day and hard a horrible startle reflex. I have not had one for a few weeks now ( maybe three weeks)? I also take Klonopin and the beta blocker Nadolol. I was taking 20 mgs of the nadolol at night but started taking half a pill in the am as well. I also am on a Gluten free diet. I am not sure what has helped more and I waited a long time to up the beta blocker because I did not want to be more tired. Once I got used to the increased dosage I might even have a little more energy... still have to take a nap though . I have been on several beta blockers so consider changing yours. The Nadolol in 2times a day has really helped me. I have even been able to tolerate coffee. I hope you can figure something out because I know how horrible these can be!

Hi. I am having problems with Raynauld's . My doctor wants to add a CCB to my list of meds. I already take a Beta blocker. Any suggestions?