lewis

Alot of your test results looked like mine. It appears as though you are normal just like me.lol. I wish I could be more help. My doctor told me they don't know what I am feeling or why because everything was within normal range. I think the testing is very vague and needs to be refined to showing more finite results and be more tethered to the individual instead of generalized for the whole population but that is just my opinion.

It's frustrating for sure! I have been symptomatic for 2.5 years and still have no diagnosis (been through every test I know of) still with no answers however I have found things that have helped and my quality of life is better and have more good days than bad but still not where I was before. I play close attention to everything I eat adds how it makes me feel and everything I do and how it affects me and have found a good road to be on.

I have the charge HR and the heart rate it shows in the graph on the app in my phone is an average over 4 minutes (I think) unless your in excersize mode (by holding down the button) then the average is every 1 minute. Also the real time monitoring on the bracelet is slow as it will show high numbers from when I have been standing although I am now sitting and my pulse has gone down. It has helped me realize when I need to be more hydrated and have noticed trends that have allowed me to start running again. (Not far but at least it's some and feels really good). I also like the sleep part cause I thought I was getting more sleep than I actually was and have budgeted my time for more sleep and in turn feel a bit better. I recently had to switch wrists due to it giving me tendonitis for some reason. In all it has improved my quality of life.

It's a double edged sword for me. Caffeine brings my heart rate down from the vasoconstriction but makes my anxiety and edginess worse.

It'd be a drive for you but there is an autonomic nuerologist at the university of Utah.

Klonopin (clonazepam 0.5 mg) is a very effective drug. On my first and second day, I felt dizzy but then it is fine. I took it for about a month and then they put me on venlaflaxine which doesn't do the same job. This too made me dizzy and felt weird in my brain for a weak. It is hard to describe, but it felt like thingling in my brain, but 50 cm above my head.

There is methocarbamol 400 mg, which they sell with acetylsalicyclic acid (aspirin) or paracetamol (Tylenol). It is a muscle relaxer and it is cheap. Don't need a prescription.

Not sure where your located but methocarbamol is prescription only in United states. Boooo.

Thanks for the replies. I will look into this stuff. I should have mentioned that I don't like the xanax because I took it for a week and had withdrawl going off of it and now just taking it one time gives me those same withdrawal symptoms for 3 days after.

Looking for ways to treat anxiety feelings that can be used as needed either by medication or supplements? I've tried xanax but it doesn't agree with me. My doctor prescribed me buspar but don't want to be on something everyday for something that only affects me occasionally.

I had low iron and copper levels and was borderline anemic. My doctor said since males typically have high iron levels he told me not to take any iron supplements. I don't think he realizes I'm anything but topical. I eat red meat every day and that has helped. I can tell when it's getting low because my nerve pain gets worse if I've missed a few days. Couple days of buffalo steaks and I'm much better.

I was a runner before I got sick. I have worked myself up to being able to lift weights (almost heavier than I've ever done), use the row machine and recumbant bike. Some days I feel very strong and almost normal however every single time I've tried to run it's back fired on me and left me with problems so I just don't do it anymore and stick with excersizing I can do while sitting down. I sure would like to go for a run though.

I usually cut the 1mg ones in half. However I only take it when doing shift work because if I take it at night I have horrible episodes of not sleeping and nerve pain all night. Weird. I might check into a different brand.

As part of this does anyone have the experience that when in public that everyone looks familiar? Just about every face I see I think, where do I know them from? It doesn't happen all the time but when I was reading about derealization it kinda made more sense to me.

Hi Mike, I have depersonalization disorder. For me the depersonalization and derealization were my two worst symptoms when I first got sick, the POTS symptoms were not real even a problem at that time. My first 4-5 months of being sick the depersonalization was awefull, but the derealization has typically been more of a symptom over the years. One of my medications helps both of them thankfully, but yea it's one of the worst experiences I've ever felt; tons of brainfog, feeling so detached, and everything looking very daydream or picture like, and just feeling detached from my emotions even though they were still there, it's definately a strange form of suffering for sure.

I had wondered what meds they use to treat it?

You sure the urgency isn't due to some sort of infection? Reading stories like this just makes me sick. I don't pray but your story inspires me to enjoy my life while I have what's left of it. I hope the best for you.

Brought this thread back up since my sleep disturbances left for almost a year and now are back with a vengeance. Anyone had similar issues and had a sleep study done and were able to get results that helped? Some one mentioned earlier that they had a fit bit that showed them totally out until they woke up suddenly and didn't sleep well after that. This is just how mine shows.

Any of the chemically made supplements like the ones you take make things worse for me especially the magnesium and b vitamins. Maybe something to look into and toy with.

Hi lewis! Thank you for your reply. I'm glad to hear the beta blockers helped you. I know I should try them. I have increased the amount of water I drink and I sometimes drink gatorade. The other day I tried a powerade drink that contains B vitamins and it was like the fog lifted and I could think again. That only lasted a few hours though.

I just called Dr. Gilden's office and they are closed today so I will try again tomorrow. It sounds like you have made great progress since coming down with POTS. I feel the same way you did. It's like I can barely fix myself a sandwich. When you say you don't have answers do you mean they haven't found a cause for yours?

Robin

Ya they weren't able to find a cause which is pretty typical so I am focusing on managing it. I'm glad I didn't wait to work on managing it because it's been a long road to get where I am. I was also like ancy and had quit exercising not knowing what was going on. I had a much better quality of life before I got sick but I definitely am better than when I was at my worst. I was apprehensive about the beta blocker and I ever started with a lower dose than the doctor recommended due being nervous about it but it was the start to the road back to having strength.

Your story brings back memories. When the doctor told me to excersize I said, what!? I can barely do anything let alone go excersize! I have been through just about every test that is out there and still no answers. However I have gotten most of my life back with the help of beta blockers and excersize. I take salt pills and lots of water before excersize (mostly weight lifting) and I kind now lift more weights than I could before I got sick. I don't feel I have the same endurance however. I was very apprehensive about taking the beta blockers as well because I'm very sensitive to medication but they sure did help me. I take propranolol. Also gluten bothers me as well as any fortified food and chemically made vitamins. I hope you can get stronger in the mean time of finding a cause.

I haven't been diagnosed( day of my testing I was miraculously symptom free)with the hyperadrenergic flavor but I'm pretty sure this is me. I have found taking salt pills and lots of water very helpful before I go for a workout or any time I know I'm going to be stressed physically while standing. I haven't tried bicarbonate because I was afraid of it messing with my acid/ alkaline levels. Not even sure if regular salt does this. I need to look into it more.

Interesting. Just looking at mine over the past few weeks. It does fluctuate better under control recently but sleeping 50-60 then boom up to 100s. Nothing like the 150s of old. But it seems slight movements make it jump high but it doesn't stay high like it used to. I wonder the same thing as I have aortic root dilation. New cardio in March. Pm me if you'd like to be Fitbit friends.

I don't have the proof other than a simple test but I assume everyone's heart jumps up as soon as they get our of bed some what. I had tested my wife and hers was 105 upon getting up. I think with dysautonomia it could be further exaggerated as I know before my beta blocker I was in the superventricular tachycardia range. I need to do further testing.

I had my wife wear it on the day that she goes to the gym for a few hours. I think the comparison between male and female isnt a very good one to compare. Her heart rate is higher than on average but the big difference I saw was more peaks and valleys on my readings. Compared to hers my graph just looked noisy although my heart rates are lower possibly due to propranolol. It makes me curious if this excessive up and down will wear out the valves in my heart faster? Not that there's anything I can do about it.

Sue I actually printed this out and took it to my doctor to try and convince him to do my surgery. It was in a different study but same age of patient and same result. My doctor scoffed at it and said to me that the hip bone is not connected to the funny bone. However it sure helped me. I only say this because you might get the same kick back since the mals surgery is controversial since it didn't help all patients. In fact my surgeon did another mals surgery the same day as mine and it provided no relief to the other patient.

My hr has been better in the winter months versus the summer months. The tingles I assume is nerve pain. Have you found things that make nerve pain better or worse? If I have any synthetic vitamins (i think it's the b vitamins or folic acid) or anything fortified I light up like a Christmas tree. Also eating red meat helps keep my nerve pain levels down. Hope this helps. I know it's miserable.

Ya know I totally forgot about the bloating! I haven't experienced it since the surgery so I forgot about it but it would feel like my stomach would just fill up with air sometimes. I still get some weird thing where I burp and my heart skips twice a day but no more bloating. I don't know how I forgot that since it was annoying and I'm glad it's gone. Gastroparesisas want a huge problem but I did have times when I felt as though the food I ate was still sitting in my stomach a day later and would burp the food I ate the day before. I could feel the bruie in my celiac artery when lying down and hard a thumping at night although my doctor said it want possible but was gone after the surgery.

Oh ya I guess I could do that. I just wasn't sure if it would mess something up with the measurements since she is a different weight height and gender than what I put in for it but I guess I'll try it.