m@t

The pupillary thing is fairly common in migraine and cluster headache I believe. I sometimes think I could put a lot of things down to a silent migraine. I don't check my pupils constantly either, the visual effects mean it is completely obvious when something strange is going on.

If you look at a video of "JVP" (jugular venous pressure) does that look like the pulsations you feel in your neck?

Nymph, I had exactly this as you describe along with the neck pain etc I don't suppose you get more episodes if you physically exert yourself more too do you?

I have the pupil issues and also the cold hands and feet. It all makes sense really, our autonomic system is broken and it is the thing that controls all these things. A cardiologist said I was a bit like an old Lamborghini, I've got all the equipment to be a fantastic sports machine but the wiring is shot which makes it behave in a less than ideal way. Sometimes it works well and you feel great / normal other times all of the connections are shot and you have to lye in bed )

Mike, where in the UK are you? I'm in Hampshire... I also suffer with random high blood pressure but mine can be different in each arm and also different sized pupils. I take candesartan primarily for migraine prophylaxis not that I was having classical migraines but the neurologist wondered my symptoms were a strange form of migraine. It is usually used as a high bloodpressure treatment as it blocks angiotensin ii which should make blood vessles relax. Strangely it has had a paradoxical effect on my BP which has risen by 10mmhg since starting and it has pushed my heart rate up from 40ish to 70ish! To me this implies some other system is wanting my bp to be high rather than just a high peripheral resistance. In terms of sugar if I am extremely symptomatic having a number of chocolate bars within a few minutes can actually abort the attack. Not exactly healthy living but it beats lying in bed waiting to feel well enough to do normal activity.

Mike! I am in exactly the same boat. If I cut my calories I become extremely symptomatic. Just before mine started I could under eat and drop weight off and feel pretty good. No problem rattling off 100km cycle rides and 5km runs were a breeze. I used a bloof glucose monitor and it would appear the hyposfeelings aren't related to my actual blood sugar as that always checks out fine. I just want to get back to hitting the gym and trails, not that I had a six pack like you did, just a similar sized pair of size 13 clown feet! I'm all ears if you find a solution as my weight is creeping up at the moment too.

Have any of you chaps got differences between your left and right eyes? Have your pupils been observed to be slow to respond? Mine have been observed to dialate at different rates and to different amounts when symptomatic. I do wonder if this is some sort of strange migraine effect without the headache. I actually get a different colour rendering in each eye, everything on one side is slightly redder than the other!

If you remember and could ask them when you next go that would be fantastic! :-)

Ah, happy new year to you! A read code is basically a diagnosis or box they put you in to. My GP is struggling and they have me listed under "Fatigue symptoms". I would be interested if you could ask yours next time you see them!

I have just started. I had POTS style heart rate symptoms when I was extremely fit which happened to get logged as I used a heart rate monitor for my training. I just didn't think anything of it! It's only been other autonomic symptoms with asymmetrical flushing and BP and the associated fatigue that has bought me to a halt. This brought my neurologiat to question if I was having a form of migraine so has decided to try the candesartan as a prophylaxis. I had terrible headaches on 2mg but have got up to 8mg over the last few days and they have stopped. Its flattened out the extreme peaks in my blood pressure after exercise, raised my low resting heart rate by 5 bpm and although I seem to feel as though I am about to crash after doing a little exercise it seems to resolve after a short sleep rather than a number of days. It is still early days but by the end of Jan I hope to be able to have a better view on how well its working.

Happy new year:)

Does anyone else take this as a migraine prophylaxis or for hypertension?

Dancer do you know what "read code" your GP has you flagged under on their conputer system? Have you had any contact with POTSUK?

Ah you will be fine then, I've never lived in a town let alone a city! :-) I didn't find it that helpful if I'm honest but I'm not a classical presentation. I don't think they usually see 6ft3 stocky blokes... I wouldn't let my experience cloud your judgement though, they are the UK experts and do help a lot of people. They will instruct you on meds etc. The nursing staff and the chap who phones to arrange things are all top notch.

It was a bit of a culture shock from my rural setting! I really do wish it was anywhere other than central London. Mind you I did make the crazy decision to drive there :-)

I have been there, waiting list wasn't too long it was a month or so for the initial consult. Then they offer to put you up in their hotel whilst you under go testing over a couple of days. If you are flexible with time they can sometimes squeeze you in for the autonomic testing. I had a phone call the day after my initial consult offering testing the following day. Initial consult was at Royal Hospital for Integrated Medicine around the corner from the neurology and neurosurgery place. Where abouts are you based? Hope it goes well for you!

I know most of you chaps here are mainly into the POTS symptoms of dysautonomia but I have a few other symptoms that I have been researching. One of the things that was noticed is that when I am symptomatic I often get elevated BP but this will be asymmetric between my arms by up to say 40mmhg systolic. So for example we have seem 190mmhg/110 in the left and 150mmhg/100 in the right arm. This prompted investigate for subclavian steal syndrome but on reviewing the CTA and MR it was found there was no occlusion the sub clavian artery. When less symptomatic this difference completely disappears and I will have a BP in the area 130mmhg/70 in each arm. This is repeatable and has been measured in both arms at the same time before swapping equipment between arms and measuring again to remove any measurement bias. I also get problems with one eye dilating whilst the other does not etc. I was quite surprised that I managed to find a paper by Derrick Lonsdale which is entitled: "Exaggerated Autonomic Asymmetry: A Clue to Nutrient Deficiency Dysautonomia" http://www.webmedcentral.com/article_view/1854 I really wish this wasn't posted in the "Alternative Medicine" category as this will deter most medics from reading it. None the less I pushed on and read the article and it seems to imply that this can be caused by a deficiency of Thiamine (Vit B1) be it either from lack of dietary in take or inability to process. I did spend the year before this all cropped up on a very strict and repetitive low carb diet with a couple of hours a day of hard cardio work (25 miles cross country cycling) which saw me lose 30kg in weight. I am trying taking a thiamine supplement but there no difference at all at 1 month in. It probably doesn't help that I hate taking any kind of "supplement" as I have always viewed them purely as ingredients for expensive urine. I also have also had a savage craving for chocolate for the last year or so, not sugar, just chocolate! Researching this also points to this being a symptom of Vitamin B1 deficiency, a rather strange coincidence! Just throwing the data out there in case anyone has any views or it helps anyone in the future! I would also be very interested in hearing peoples base line BP arm to arm readings and readings when they are having a bad flare up. Matt

bigtrouble, I was once quite fit (not thin) but alas the last 18 months or so that has come screaming to a halt with these random symptoms. ) I think a fair degree of genetics comes in to play for me.

Mine is between 35 and 45 and has dipped down to 29 on a 24 hour monitor. It's not gone up much since my symptoms got worse and I have stopped cycling, swimming and running )

Thanks for the reply sarah, POTS isnt my primary concern. Granted I do get the change in HR on standing but am fairly asymptomatic from it. The main issue that I have is my left pupil will dialate in certain circumstances and my blood pressure with become elevated and wildly different between arms. The pupilary changes can be quite startling!

Any of you other UK based peops know what your GP has coded you as on their system? Both a cardiologist and neurologist have written to the GP and said I have idopathic dysautonomia which fits all of my symptoms although does not explain them. Sadly the GP says there is no code for this on their system (based on SNOMED codes I believe) so is using a coding of "fatigue symptoms"! The problem with this is from experience anyone glancing at the notes sees that and reads it as time waster / somatiser.

Could it be BPPV as you were moving your head about at the time? http://patient.info/health/benign-paroxysmal-positional-vertigo-leaflet

Just completed a poormans TTT with these results. Not exactly a postural drop... time position sys dia hr0m flat 138 62 530m43 sat 135 75 611m18 stood 125 78 1001m45 stood 127 84 1002m11 stood 140 93 1052m39 stood 155 96 1113m04 stood 151 103 1083m28 stood 149 104 1064m30 flat 165 41 565m20 flat 161 55 53But a fairly good HR excursion. Probably explains why I feel a bit knackered just wandering about the house.

Hi Chaps Going back a year or so before all my symptoms got the better of me I had a rather low resting heart rate of 35bpm or so due to my high level of exercise. Due to the level of fatigue I have suffered my activity has all but stopped and I have deconditioned to around 48bpm resting. This shoots up to around 98-100bpm going from lying to standing. I have not been bought to the dysautonomia diagnosis by this route, mine was due to horners syndrome. Does my 50odd bpm jump still align with a POTS diagnosis or does it have to get well into the 100's? It also seems to flare up every few weeks and during these times the HR rise is greater than others. Does everyone elses remain constant or fluctuate too?

By coincidence I have just had my MRI report back and my c5/6 disc is prolapsed and touching the cord. So Ill be interested to see how you get on. Agree with the above about keeping eyes closed during the mri, the racket the machine makes is quite rythmic and was netter than the shockingly bad music selection they had available!