m@t

How much is the moderate calorie drop? Have you tried stepping down to your really dieting calorific levels but reducing at say 200kcal / day / week? I would be interested to see if that helps. I'll report back how my experiments go too :-)

Ah ha, thanks corina, there was no tick in any of the email boxes on that page... Hopefully fixed now!

In 2013 I lost around 30kg by maintaining 1600 kcal a day and doing loads of PT and it was after this my dysautonomia symptoms started. Now my symptoms get worse if I do strict diet or exercise and I have put around 10kg back on. Its bloody annoying! I think the dieting and exercise appears to the sympathetic nervous sytem as a level of stress which irritates it and causes flare ups. At the moment I am logging what I am eating but I am just eating what I want. This seems to be having a positive effect on my flare up And I am feeling better day on day. I then intend to back this off by a few hundred calories a day over a few weeks slowly and gradually so as to not shock the system. Hopefully this will at least stop the gain and then hopefuly move to a drop. I know I have been guilty in the past of taking in say 3500kcal a day without realising and doing little activity. I would then start a diet where you drop to 2000kcal or less on weight watchers and throwing in exercise on top which on reflection isn't a good plan. Not sure if thats any use to you guys?

Corina, I checked that box on the first post, still not getting notifications! :-(

Blimey, I was expecting an email notification of replys but didn't get one and on checking back I see many replies! Gordon How much training were you doing? Have you looked in to Overtraining sydrome / unexplained under performance syndrome? I thought this is what I had originally, but in the end it didn't fit, I did however learn quite a lot. One of the ways of identifying mild overtraining is to look at your waking heart rate every day and if it is say suddenly 10 bpm higher when you wake up one day then it is highly likely you have not recovered from your previous exercise session and should treat that day as a rest day. Not sure how much use that is to you but it may be worth checking out? Corina I understand what you mean about SSRI's but the problem with GP's is once you get put on an SSRI or similar any new symptoms are put down as side effects and any if they don't relieve the symptoms you are then pushed up to the maximum dose before having to move on to the next one. Having seen someone go through this in reality coupled to side effects and widthdrawl effect I would rather give them a miss. Katie I wouldn't say I have truely POTS style syptoms, it seems to go on sasy a 4 week cycle. Sometimes my HR only bumps up by 20 bpm from say 45 to 65 bpm then at another point in the cycle it will go from 45 to 120bpm. I never have low BP, its always up in that 140/80 region or higher so I don't get a postural drop. I did ask my GP if my hands look like Raynauds and he said it wasn't Raynauds but he couldn't say what it was. I see you have been diagnosed with Lyme, I had a Negative ELISA and a sub threshold IgG OspC band on the Western Blot which I may consider pushing to be investigated further. What was your experience? Sarah That's an interesting story you have there! I have had two blood and urine tests for catecholamines and metanephrines. The first when I just didn't feel right and everything was in normal limits other than plasma 3-methoxytyramine which had a level of around 250 with an upper reference range of 120. The second when I had the shakes and cold hands I don't have the plasma results for yet but the urine was in normal limits. What were you levels like? I have had no endocrinology refferal or anything else for scans of chest / abdomen etc. The worst I have got in terms on tachy is about 150, ah gone are the days of sitting at that heart rate for a few hours enjoying it as part of exercise! Angie Blimey, that is so similar to my symptoms! How are you managing your diet? I keep asking for advice on this but I don't get much of an answer from the pro's! I don't suppose you have ever had the migraine, horner's or RAPD too have you? Can you give me any more info about what happened when you started on the beta blocker? I am guessing you aren't in the UK? All Thanks for your replies, it's great to have some others who seem to have a clue what I am on about! More than happy to get PM's if you don't want to continue here! Cheers Matt

A little over a year ago I was extremely fit and was always out cycling or running etc. I would go on 40 mile+ bike rides after work etc. Then suddenly I started having migraine style visual aura and episodes of fatigue that meant I would be wiped out after some exercise sessions but not others. I stopped training for a couple of months and then slowly started to build back up my exercise, every 3 to 4 weeks I would then crash for no reason and need a couple of days in bed before getting back to it. Then early this year I started crashing after just going to the shops to buy groceries. I contacted a neurologist who noted my pupils were different sizes during a crash and told me I had autonomic dysfunction with horners syndrome and arranged an MRI and MRA head and neck which came back "clear". She offered no advice other than to get used to it. My heart rate rises from 45 to 95 going from lying to standing on a bad day and when asleep it drops down to 29bpm. All normal aparently! I then started having other symptoms such as my BP shooting way up high to 190/110 all of a sudden whilst sat at my desk. My hands going cold and clammy to the point where no blood could be got from them with a finger prick for blood glucose whilst at the same time my face and head becomes flushed and hot to touch. Often I will have a tremmor at the same time this is going on and a crippling visual migraine aura. On consulting a cardiologist he tells me this is all also autonomic dysfunction and nothing can be done. I had a couple of 24hr urine colections which were clear and a blood test for catecholamines which showed up 2x the reference range of a dopamine metabolite, but it has been decided that this is unlikely to be a pheochromocytoma as the level is not high enough. My GP wont refer me to the Autonomic clinic in London as "I'm not bad enough". So basically I have gone from being quite atheletic to struggling to do a full day in the office for a desk job! I have had zero support other than being told to "not worry about it" or "its all psychosomatic, you need an SSRI". I am just about at the end of my tether as all I want to do is crack on and get back to work full time and do the odd bit of exercise. No point in a GP follow up as I refuse to be put on an anti depressant and that is their only "advice", no consultant follow up for another 4 months and that will only be a 10 minute waste of my time. I'm 36 but may as well be 96 as I have absolutely no quality of life as no one will give me any advice on what I should do other than "get used to it". Anyone else in the UK ever had a similar set of symptoms and actually managed to get treatment of aby kind? I have already paid out to see the consultants listed above privately as my GP would not refer. I feel incredibly let down! Matt