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.