KareBear

Welcome to the forum, Trappedat20! It sounds like you are just beginning this journey with dysautonomia and seeing a POTS specialist will help provide more answers. You symptoms sound very much like mine except my bp never goes high. There are lots of people on this forum that do get higher bp's though. Have your docs tried any meds yet? There are many meds and other things that can help stabilize some symptoms. One thought is that some of your bp readings could be off a little if you take back to back bp measurements. A couple back to back is ok but if they are too close together and you take several you may want to switch arms to get more accurate readings. Sometimes the blood flow in the arm hasn't recovered before taking the next reading if they are too close. Just a thought! Of course the basic things like increased fluids (lots of gatorade really helps me, I drink about 60+ ounces a day), and increased salt intake can help POTS. Have you tried these yet? You were so lucky that your mother recognized the symptoms and got you on the right track so soon. Hopefully your doc can help you get your symptoms under control more. And soon! For me, my symptoms eventually "settled down" and my symptoms became more leveled out and consistent over time and with the help of meds and that seems to happen to many others so Dont give up hope! Things can get better Hang in there!!

I have the same thoughts about using hormones! I always thought, "why would I do that unless absolutely necessary?" I'm actually glad I never used them. I even had years of painful ovarian cysts that docs said being on BCP's would possibly help but I chose to let my body take care of them naturally. They eventually stopped. I can see why some people need to get on hormones but If I had to I would only use them for a short period and then see if things were better. Sure seems like they could affect lots of things. Maybe with the seasonale you could stop for 7 days at the end of each month first to give your body normal monthly cycles first and then over time stop them completely? This is what a friends doc suggested once for her so maybe you could ask your doc about it.

Maybe you can send them a PM on their profile and get a hold of them.

My doctor had told me that my cardiomyopathy comes from the constant tachycardia that has been untreated for my whole life. The tachycardia is from POTS so that to me is related. He said that the constant over working of your heart for so long can wear it out causing the cardiomyopathy.

I have never been on birth control pills/hormones. Ever.

This reminds me of when I got officially diagnosed with POTS. My first visit with my EP Cardio was very detailed and asked many symptom questions. He kept asking me if I felt sleepy or tired......over and over. I dont understand the difference between the two! Honestly. Maybe he forgets being deaf leaves many holes when it comes to describing things but still to this day I dont understand the difference. Maybe it's like that with dizziness and brain fog for you? Just a thought.

I also always considered "brain fog" the inability for me to think straight or my forgetfulness, cant find the right words, forget what I am doing or going, etc. that is totally unlike me because my brain is normally overactive and always had a photographic memory. For me, I feel dizziness is when I feel the room spin, I feel off balance, feel like I am moving when I'm not.....those type of things. Of course dizziness caused by lack of blood and/or oxygen to the brain can make me have both at the same time and maybe this is what you are having so it can be confusing. I have only noticed itchiness when I am standing and the blood pools in my legs, sometimes it makes my lower legs or ankles itchy but it resolves when I lay down. Also sometimes feels like a bug crawling on my leg when there is nothing. I always assumed it was the blood flowing down my legs or maybe my veins but dont really know.

When you are standing and see your leg veins looking like that and/or also your legs may turn red or purple for some. That usually is from blood pooling. Yep! Especially if you never noticed this before having POTS symptoms. Before my symptoms got bad My legs never used to change colors but now when I stand my lower legs turn red, feel heavy, and many times start to swell around the feet and ankles. Also the veins appear very prominent like you mentioned.

Have you tried the abdominal binder yet? I still plan on trying one soon as well. I know having O2 at home has helped me a lot but doesn't seem to be used by many others on here. My insurance never even questioned it when my doc prescribed it years ago so there was no problem getting it. Anything non-pharmaceutical that helps is always worth a shot

Aww thanks guys and gals . You made my night!

I saw Dr. Fealy at Mayo MN in 2008. I had already been diagnosed locally with POTS, OH, etc but my parents wanted another opinion and I had already tried the typical POTS meds with no improvement of symptoms so they hoped Mayo could help more. I have to say the clinic is extremely efficient, employees and staff are wonderful, everyone is super helpful there. I was truly impressed. The testing and appointments were on time and I got immediate info and results for the most part. It is an exhausting few days and took everything I could to even be wheeled in a wheelchair to my appointments. They pack a lot into a few short days. Things initially did not go so well when I met Dr. Fealy, but after the initial improper first impression he had of me was cleared up things went better and he was knowledgeable and pleasant. (I can give more details in a PM). Unfortunately other than offering Mestinon which I had not tried yet, they had no other treatments to offer me. He diagnosed me with "severe adrenergic dysfunction" and was in agreement with my current diagnosis'. They were great for getting a concrete diagnosis but I didn't come home with anything other than that, and I already had been diagnosed so for me it only gave me more piece of mind and my family too I guess. There was no further treatment plan set up and no looking into what may have caused this. I was still just as disabled after my visit there so if anyone is looking for a cure you probably wont find that but will get a thorough testing and proper diagnosis along with initial treatments if you haven't begun those. At least this was my experience. It was a good experience overall.

I'm so sorry to hear about your day today! Gentle ((((hugs)))) coming your way. I can relate to days like you're having and it's pure misery. Maybe when the hubby comes home you can ignore the housework, order pizza, and have him give you a relaxing massage Housework will always be there tomorrow or even next week, if it's not urgent it I skip it when it's a rough day. If anyone has a problem with my messy room or house then they are welcome to clean it Hang in there! I hope tomorrow is much better.

I do understand your frustration and honestly dont know how to get them to recognize dysautonomias or POTS as disabling conditions. Like Katybug said, you have to play the game to get disability pay. We know why we are disabled. I also had to see a psychologist appointed by SS before my hearing and thought it was total ** too. I went because I had too and because it seemed standard for others going thru the process even though I knew I wasn't depressed. I was awarded SSDI and never really told what diagnosis was accepted, I assumed they accepted the POTS diagnosis but later found out they listed me as having depression and a heart condition. I dont know where they got depression from because I dont take any meds for that and never was diagnosed as depressed but that's what they have listed. I dont like that listed but cant change it and feel as long as I get the end result I needed which is disability pay and medicare then I can live with it. I think my lawyer really saw how disabled I was and so did the judge, especially when I had to lay on the floor at my hearing lol. I think they did what they had to do to help me get the benefits.