KevInChester1

Highly sensitive to noise and so often do that covering one ear trick. Also have a certain dislike towards certain sounds - pens clicking and gum chewing being 2 of the worst.

I walk large distances most days - most I've done in a day was 20 miles (32km). Low intensity is fine I can go on and on, high intensity my blood pressure rises with my pulse rate until it all gets too much and then it just plummets.

I've tried Tyrosine supplementation before and find that it increases my depression. Think it might work for some people though.

Just bumping this as I have additional information. I've been taking blood pressure readings for a while and have noticed that my BP is too high (145/90 72) sitting, much too high after standing and walking into the kitchen (165/110). My pulse rate nigh on doubles with gentle exercise. With more intense exercise my blood pressure plummets, last 2 times I took a reading after feeling faint were: 75/50 110 pulse and 109/90 153 pulse. I'm guessing this is low blood volume? I also have symptoms of EDS (hyper-flexible elbows, shoulders and fingers - and stretchy skin). I've had 2 ECGs done which seemed fine, a heart scan (echo) and am due to have a 24/7 BP monitor done on Tuesday.

Yeah, what I need to do is go to the Doctors and then say to them I'm going to stand up and walk down the corridor and back so they can test my blood pressure. They normally test when sitting and it's usually pretty good then! What confuses me is I have symptoms of Ehlers-Danlos - hyperflexible (especially my elbows/shoulders) and stretchy skin. My Doctor said that my elbows were making him sick when I showed him!!! (laughing as he said it). Didn't think Ehlers-Danlos was compatible with high blood pressure. Also decided to try Lysine/Arginine. Both together in same amount do little (cancelling each other out), Lysine on its own makes me even more tired, and Arginine gives me chest pain! Been sitting for a few minutes 140/84/87 now.

My blood pressure occasionally drops but it mainly it seems high. I can stand up and walk into the kitchen (about 7 steps) and end up with a racing heart. When I feel bad I check my blood pressure and find it's often 140+ over 100+ - just now I felt awful and checked, 144/112 with a pulse of 128! I think it's too much nor-epinephrine which is borne out by how much worse I feel on any medication that changes this (SNRI type ones). This has always been the case, I try to keep fit and eat well. I can walk for up to 20 miles in one session (though have only done that a few times) typically my walks go on for 5 miles or so a time. I can't jog though as although my heart races with walking, with jogging it just goes off the scale.

This happens when I shave my face. As unpleasant as it can be, I have little choice as I end up feeling much worse without shaving - just a days growth irritates me and makes me extremely hot in the face.

Yeah was looking into it, seems that the main factors are: Not needing to expend as much energy to propel oneself Climate and the fact you are running on a smooth non changing surface Guess they should all add up to make one doable, and one just not doable at all (well without a lot of training). Perhaps even just those add enough to the blood flow requirements to trigger me.

When I've been at my peak of health I've been able to run on a treadmill without too much issue - I can even put it on a decent gradient and speed and still be able to run for 30 minutes or so. The first time I did this I surprised myself as I didn't think I'd even last a few minutes. Jogging outside I am unable to last for over a minute, my heart pounds, I feel sick and dizzy. I know there are differences between the two, the main one being that a treadmill doesn't require you to propel yourself along as the road moves for you. Would this make a substantial difference in explaining why I can tolerate one but not the other?

Recently I've been dieting, initially I cut fat down by a great degree, and removed all bad fats from my diet. The result was I got even more depressed than usual - though physically I felt fine. I ended up having to increase the amount of fat that I consumed so as to feel better. Of course this could have been some sort of vitamin/mineral thing too, or a reaction to the amount of exercise I was doing. Still be interesting to find out how you get on. As for the op, I'd love to know some meds/supplements that have worked for people, as to be honest none of the SSRI work that well (slightly mood balanced, slightly zombie is the best result I've had), SNRI are out too as they make me go crazy. Might try Tryptophan working under the assumption I just have too little serotonin for any SSRI drugs to work effectively with.

I was put on this ages back to treat ADHD as it is used off label for that purpose. It turned me into a complete wreck, liable to cry at any moment, it also made me yawn a lot (with intense nausea when I did), and made me totally unable to balance on one leg. Not a good medication for me, I came off it as soon as I could.

I'm not 100% certain if I have POTS but I have taken Buspar for anxiety and found it helped. At the time I was being driven crazy by repetitive thoughts, it helped me to take the edge off.

Didn't want to start a new topic as I feel it may be more relevant here. I noticed that before/during/after thunderstorms many of us feel worse, the changes in barometric pressure/humidity etc. As 'lightning storms' help produce Nitric Oxide in the air, would any appreciable amount of it be inhaled due to it? (I'm doubtful, but could help explain why it bothers some but not others. I've done some trials with Arginine myself, I can tolerate around 500-1,500mg but find that it eventually leads to making me feel as if I'm about to have an asthma attack, and also gives me slight chest pain. Bizarrely though it doesn't seem to give me headaches at all, well not directly, it seems to cause my sinuses to close up which then may or may not give me a headache.

I do have a lot of the symptoms of ME, however I've felt this way most of my life rather than being a new thing. I remember in school when we had choir practice, I found it nearly impossible to tolerate as I just couldn't stand for that long (in one place). Think in a way this then led to the ADHD style behaviours - acting up etc, so I could get out of doing it. Low blood volume sounds very possible - especially as it can then lead to increased Norepinephrine. I've always craved salt, and always drank the water from pickle jars etc My fatigue is often really bad, but it can mostly be overcome. It also doesn't stop me from walking vast distances (did 18 miles in a day a few weeks back).

Yeah I get startled easily too, well in a way it varies. I always used to get startled and scared by dogs coming up to me and barking (if they were larger dogs), now I'm fine and don't mind it at all. Or if I was walking past a garden and a dog barked loudly at me without me noticing it, again I seldom become startled by that. I however startle easily at other times, certain noises or sensations are worse than others - I can recognise the one about your name being said in a certain way. I have always tended to be on the warmer side rather than being cold. I can wear shorts in the winter with short sleeved tops and not be that bothered, whereas others are wearing jumpers and coats. If it rains I seldom put a coat on as it's often a choice between getting wet or sweating so much it looks as if I've been rained on anyway (and smells worse I'm sure!) Though just recently I've noticed my temperature isn't quite as bad, still not great though, I'm always wearing shorts unless I have to wear trousers (work etc) Going to bring this up in the week - my heart definitely starts beating very hard if I get up from a supine position, or if I need to put in a certain amount of effort (walking up hill, cycling on a bike, jogging). I go to Aqua Aerobics and find I can tolerate that pretty well as the water cools me as I'm heating up, and also the water I guess has a slight compression effect. Though anything whereby I have to tilt my head up and move my arms tends to make me feel light headed and uncomfortable. Thanks for the reply, and I'll keep this up to date