UnderwaterThing

One more, the physical therapist did mention cardiac rehab where your pulse and bp is monitored during exercise. It might be worthwhile to look into it.

I was just going to start a post about this. Glad you mentioned it. I just started physical therapy based on the suggestion from my neurologist at Stanford. Yet, the physical therapist and I both weren't sure why I was there and what the goal is. I have been able to work out consistently over the past year on my stationary bike and doing strength. But I started having difficulty walking 10 months and now use a cane. No one is sure why I am having trouble walking so the physical therapist isn't sure how to treat it. He told me to start doing vestibular exercises and to not fight being vertical so often, which is difficult because I'm a teacher and have to work hard to conserve my energy at work. I have my next appointment tomorrow. The adventure continues

I was also diagnosed with vestibular ataxia but I still don't have a lot of answers. I actually started a thread about this a few months ago. About 10 months ago I started having a lot of difficulty walking. When I walk it feels like I am walking in sand or the ground is moving. If I walk more than 50 feet I start to get really exhausted. I use a cane anytime I leave the house now and it has made walking much easier with the stability. It helps me maintain my energy as well. I teach at a community college and now drive myself all over campus. I'm still working on finding answers why this suddenly started and what it means. I am also starting physical therapy. My guess is that it is neurological. One doctor has told me he thinks it's unrelated to POTS. I did an EMG and it was normal. I hope you get some answers also and if I get some in the near future I'll post here again. This symptom is absolutely maddening. I never imagined needing a cane at 33.

Freaked, I can definitely empathize. The constant chaos of this condition is mind-numbingly frustrating and difficult to navigate. I have always had anxiety but it was manageable before the POTS started. Now I am afraid of everything. I'm afraid of the future. I'm afraid to try new medications or make changes. I'm afraid I'm going to lose my job. I'm afraid I'm going to not have health insurance. I'm afraid the patience and support of my friends and family will run out. I started seeing a therapist about 6 months ago to work on coping strategies and it has been incredibly helpful. If you have access to mental health support, I really really recommend. Being able to talk to someone about it is invaluable. They might be able to give you some strategies as well. There is definitely an emotional aspect to chronic illness that I think many medical doctors underestimate and stigmatize.

I was working on a PhD when I got ill and the primary doctor I had at that time said "You didn't have a heart attack. Go back to school!" I also had an endocrinologist pat me on the head like I was a little girl and told me I was imagining it. If a doctor says anything like that to me now, it's a deal breaker. I find a different doctor. I've come too far to have to fight so hard to make them believe me.

I live for Mario Kart but it makes me incredibly dizzy. Even just trying to watch a movie can make me dizzy. It really doesn't take much. Not sure what the resolution is

I also have had very deficient D levels. I was at 17 a few months ago and have been down to 13 before. I'm taking 50000 units of D once a week and levels are slowly rising. It's strange that so many of us have this similar issue

Looneymom: That's a good suggestion but it isn't necessarily an episodic issue. It just seems worse on my bad days. The best explanation I have is that it feels like I'm walking on sand. If the lights are out in my apartment when I walk I have a hard time telling where the ground is. It just feels like the ground is moving. One doctor suggested that it sounds like nerve damage, which makes perfect sense with dysautonomia/POTS. This just started in April. It's great to hear everyone's experiences and coping strategies. It's been really frustrating dealing with this new challenge

Bumping this thread back up. The walking issues seem to have worsened, so today I am giving up on denial and going to buy a walking cane. I never imagined being 33 and needing a walking cane, but this is where my condition is right now and I know it will help me. Still wondering if any others are experiecing this because my doctors don't seem to have answers. I don't think my neurologist's nurse practitioner at Stanford believed me when I mentioned this issue. The battle continues.

I take Verapamil and it has completely changed my life. The first night I took it, I woke up the next morning and could inhale all of the way without feeling so much resisitance from my heart. It also helped some of my GI issues. I can't imagine ever getting off of it now and it has helped so much. I hope that it works for you!!

I had some trouble with dental cleanings too but I have never heard of that device. I went to an appointment in April and they actually had lowered the chair so that I was laying past 90 degrees (which I didn't realize until I tried to get up) and the vibrations from the cleaning were making me severely nauseous. I was really afraid to go back. At the last cleaning a month ago, I communicated with them about my condition and how terrible the last appointment was for me. That appointment was easy and I was able to walk out of there with no problems. Maybe you can say something about hypersensitivity and ask what accomodations they have for you based on your condition. Talk to them about your concerns and hopefully they will work with you.

Before I was disagnosed in 2011, I didn't work for an entire year. I was working on a PhD at the time. I had to go on medical leave mid semester and I had no idea what was happening. It took a very long time to get a diagnosis, good doctors, and proper treatment. I started teaching part time last year and then took on too much last Spring semester and ended up on medical leave again. I just got a full time teaching position at a community college, and those positions are very difficult to get, so I am going to work incredibly hard to stay healthy enough to do what I love. I do average about 2 sick calls a month though unfortunately. I feel for those of you who are completely unable to work,

Night is usually better in terms of my GI issues and appetite. I'm on Verapamil extended release so by the evening it has worn off and the tachycardia and difficulty breathing become more intense. I would say night is often better for me though

Yes. I agree that this can be a very scary symptom but I have learned to adapt to it a bit. Before I started taking Verapamil, I could not inhale completely. When I did the TTT, my cardio mentioned that my heart rate accelerated severely every time I inhaled. That has improved quite a bit with the Verapamil but it is still a struggle to inhale. I often wake up in the middle of the night or in the morning breathing very shallow. After I eat, breathing becomes even more of a battle. Breathing is controlled by the ANS, so I'm sure the issues with breathing go hand in hand with other symptoms. I am going to do more autonomic testing in a few months and I'm curious to see what it will show in terms of my breathing. I often don't feel like a human being since it is such a constant battle just to be able to eat, stand, walk, breathe. Hang in there everyone

I wish you the best of luck. I had both procedures last December. The prep was no problem. Just do your best to stay hydrated. I let the anesthesiologist know beforehand that I had POTS and luckily he had heard of it. After the procedure, he came over and told me that he had a difficult time controlling my heart rate during the procedure because it kept shooting up really high. Communicate with the doctors as much as you can before the procedure and try to stay calm. I know it is extremely stressful. I was panicking about it for months before I finally did the procedure. Just think what a relief it will be when it's over with.

khaarina, I second everything you said. I have explained to a few people that I work very hard every day to pass as a "normal" functioning person. I'm a professor so I am in front of students many hours a day. When I am feeling terrible (which is most of the time), I have to fight really hard to maintain my energy level and be productive for my students. I never tell my students what is going on but I had a really bad flare a few months ago and had to go on medical leave. I had to tell them that my health issues were the reason I was gone. Like khaarina, I try not to unload on my husband because he is the only person I can be honest with about my daily struggles, but it isn't fair to him to have to be burdened by it constantly. He is incredibly supportive and patient. I agree that it is important to avoid isolation. It is so easy to fall into that trap. I just started therapy again and learning some coping skills related to being chronically ill is the main reason for trying therapy again. Forums like this are also invaluable to avoid the isolation as well. Thankfully, I have a close friend who has Chron's and she can empathize with me. The battle of whether I should hide this or be honest is a daily struggle but I'm learning that being honest is often liberating. It's nice to hear I'm not alone with struggling with isolation

Thanks Agreeky! I was searching for threads but couldn't find any that discussed the specific symptoms I'm having where I feel the ground sinking when I walk. I definitely have the swaying when I am still too. I told my cardio a few weeks ago that if we had an earthquake (I live in California), I probably wouldn't feel it because I always feel like I'm swaying or rocking.

I am just curious if anyone else has experienced the strange new symptom I am having. I was diagnosed with POTS a year ago. My heart rate jumped almost 80 beats during the TTT. I am now being treated at Stanford. I might even be doing a second TTT in the next few months there...which I don't know if anyone has ever done two or why we would agree to do that torture twice. My symptoms worsened significantly over the last few months as I was working too much and couldn't manage my symptoms at the same time. I now have this issue when I am walking where I feel like I am walking in quicksand or walking on a trampoline. I also feel this heaviness in my chest occasionally as well. I started taking Florinef along with the Verapamil I have been on for a year (which has been wonderful) and those issues improved a little bit but not completely. I am wondering if anyone else experiences those issues with walking or the random heaviness in the chest. A few doctors have suggested that it may be nerve damage.

There must be a variety of factors for each of us that causes hair loss. I can't imagine why medication changes wouldn't be a huge factor. I started noticing my once thick hair was thinning about 3 years ago and then when I went off birth control 2 years ago I lost my hair by the handful. That's also when the POTS really started. I have been losing hair intermittently ever since. My hair is noticeably thinner and you can see my scalp through my hair, which is incredibly depressing as a 32 yr old woman. I am still mourning it but I am also learning how to accept it. My hair was my security blanket and now I wear it short. I have just started accepting that it is part of my new identity and new body since the dysautonomia.

It's funny that you posted this because I have always wondered about that statement on Wikipedia as well. My symptoms began when I got off of birth control after being on it for 12 years, which is as much of a hormonal change as a preganancy. I had other factors as well (neck injuries, genetics) but the hormone change was the catalyst. I have asked the specialists at Stanford about hormomes and dysautonomia. Dr. Friday agreed that hormones can definitely be a factor with POTS and dysautonomia. I would also love to see the research Wikipedia used.

Hi. Let me say that I have been lurking here over the last year after I was diagnosed with dysautonomia/POTS and it has been enormously helpful to read everyone's experiences and comments. I am currently being treated by Dr. Friday and Dr. Jaradeh at Stanford but I am at a bit of an impasse at the moment. I haven't had autonomic testing yet and I'm trying to figure out exactly what the next step is. I had a colonoscopy and endoscopy two weeks ago. I was so worried about the prep but that was easier than what my body does on a regular basis. I tried to explain to the nurses and my doctor before the procedure about my condition but of course they had never heard of it (which makes it difficult) but luckily the anesthesiologist had heard of POTS. After the procedure he came over and talked to me for awhile and explained that while I was sedated my heart rate went up to 150 and every time my doctor moved me or did anything it would shoot up. The sedation for colonoscopies is mild already. He recommended going to Mayo Clinic asap. The whole conversation confused me because I thought I was on the right track at Stanford and that would be my last stop but I know there is still more work to be done to figure it out. Sometimes it feels like we have to be the expert and come up with a plan ourselves. I had a TTT in May last year. I never fainted and my bp didn't drop but my heart rate went up almost 80 beats right after going vertical. I am not looking forward to doing another TTT but I know I have to do whatever it takes to get my life back. Some of my doctors have even mentioned surgery potentially. Anyways, I was wondering if anyone else has had issues with sedation and if they ever found out a specific cause or solution? The constant uncertainty about any medical procedure is so frustrating. Going from being an active 30 year old working toward a PhD to being couch-bound and not working for a year was a shock and I'm still learning how to manage this new body. Thanks again for keeping my spirits up all this time and helping me not feel alone.

Yes. It's actually becoming a bit of a crisis. I have intense pain, GI problems, and vomiting on the day of and a few days after. I have to miss work and work my life around it now. It's incredibly inconvenient. I got off birth control two years ago and that's when the dysautonomia really started. I haven't figured out a solution yet. Anyone else use something besides hormonal birth control that helps? I have considered trying a chasteberry supplement