So sorry this is such a long post, but I didn't want to miss anything out and my history is a real mess. If you want to you can just skip to the last two paragraphs for the main thing I need help with.
I have been poorly on and off since my late teens. Exhaustion, confusion, mental/cognition and word-finding and vision issues and then a couple of years ago I started having odd episodes that appeared TIA-ish, followed by a couple of possible big seizures and since then regular night-episodes. I also suffered from severe-complex migraine up until 2006 when I was put on Topomax for it, which really helped. Unfortunately the drug didn't agree with me and I was unable to stay on it for longer than 6 months. The migraines didn't return as badly until the last year, when they redoubled their efforts and now I'm back to severe migraines lasting a week at a time.
Prior to all this starting I was extremely energetic and fit, was a keen horse-rider, worked a 10 hour stint at a local riding school on weekends and went ice skating 2-3 times a week, plus enjoyed netball and track sports at school.
My first episode of extreme debilitation occurred when I was 19, not long after I'd left home. It was pretty much classic CFS/ME, I was bedridden after a period of severe stress, followed by a fluey bug/virus and it took several months for me to recover. Since then (I'm 44 now) I've had good and bad times, with some relapses being worse than others. In between I've had periods of good health and just 2.5 years ago I was very fit, doing the shred and dog walking daily, plus extra circuit training at the weekend. I finally thought I'd cracked it and managed to raise my health and fitness to a point where I wouldn't crash as easily - but no - I had an ankle injury, which led to Complex Regional Pain Syndrome (an autonomic dysfunction) and 6 months on crutches and half-way through that I collapsed with what the hospital felt was a tonic-clonic seizure. Since then I've had regular strange night-time episodes that no-one seems to have an answer for.
I've had multiple MRIs, had LP and nerve testing to check for MS and was eventually told by my neuro that there's definitely something odd going on, but they didn't know what and I should 'tell anyone who asks that I have CFS/ME as at least that gives them an answer - although she also said 'of course us neurologists don't actually believe these conditions exist'. I was furious with her for that and so was my GP.
Tests have shown I have 'multiple lesions in the subcortical white matter', but neuro didn't think they explained my symptoms.
After having the suspected tonic-clonic, followed by the frequent night-time 'episodes' a couple of years ago, I was sent back to neuro. GP requested the head neuro, but I was told both neuros were on long-term leave so ended up seeing a locum who was so rude and dismissive he had me in tears and my usually very mild dh extremely angry. Even worse - the neuro my GP wanted me to see was actually running a clinic in the next room while I was having my appointment. 
After suggesting the suspected t-c I had was probably a migraine or menopause related (I'm not menopausal) and telling me my brain scans were normal (after being told they clearly weren't by my usual neuro and having the letter they sent to my GP to prove it) dh demanded to know what he was going to do and he eventually decided to book me for a 5 day ambulatory eeg. It was all set up, the EEG technician had called me to book all the appointments (5 or 6 over a week in total) when I recieved a letter from the locum saying he'd been informed I didn't meet the criteria for an AEEG (didn't think I would and given my episodes are nocturnal I would have thought sleep-deprived EEG was the next logical step) and it had therefore been cancelled and I would be reviewed in his clinic within 6 weeks.
I then received a letter for each of the AEEG appointments accusing me of failing to attend and telling me I had been struck off the neuro list as a result. Called the EEG dept, told them about my neuro letter and asked them to mark my file with an explanation of why I didn't attend - they assured me they would and not to worry as it was obviously their screw up not mine. Next called neuro's secretary, explained what had happened and she said she would speak to him and I would be seen in clinic.
That was two years ago and I've heard nothing since. Having seriously had enough of doctors, hospitals, appointments and lost faith in the NHS's ability to diagnose and help me I haven't chased it up, I've just been managing my symptoms at home as best I can.
Fast forward to now and my dh has a new job that covers me for private healthcare, so I've been thinking maybe now's the time to try again to get to the bottom of what's going on with me.
Recently I've been reading a lot about POTS. I've pretty much always had problems with blacking out or almost blacking out if I have to stand for a long time. I used to regularly pass out in science lessons in primary school, as we had to stand around a table while the teacher did experiments and I simply couldn't stand for that long. Eventually I learned to stay at the back and perch on the next table over to stop myself passing out. I should also mention that I am also hypermobile, but didn't realise or even know what it was until ds2 was diagnosed a year or so ago. I was under a consultant as a child for problems with my hip and knee joints, but my mum can't remember what it was all about, other than my knees used to pop out and lock. They were supposed to be doing an exploratory op, but, being a daft teenager, I lied and told them it wasn't happening anymore, partly because I was scared of the op and partly because they said if the results were as expected I would have major surgery that would leave me with scars from hip to knee and knee to ankle on both legs. Not what you want to hear as a 14 year old girl.
I have had POTs suggested to me several times by various people and I do seem to fit the symptom profile, so I decided to buy a finger SAT/pulse monitor and see what my heart rate is doing when resting and standing.
Been testing myself over the last couple of days and my resting heart rate is generally between 63 and 67 bpm. When I stand it rapidly rises by between 30 and 40 bpm. This morning I tested myself before getting out of bed and then standing. It was 58 bpm while lying down and shot to 120 when I stood up. The heart race increase seems to continue or hold steady for the first couple of minutes, then drop back a little to between a 25 and 30 bpm increase. I tested it once yesterday for 5 minutes and it remained at a 25 bpm increase, but realistically, I didn't rest for long enough after getting back from the school run before testing. I haven't tried measuring it for longer, because I feel too rough to stand for that long.
Does anyone know, are these results suggestive of POTS or should the heart rate remain elevated for the full 10 minutes after standing?
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Can anyone help with info about POTS?
moosemama · 12/02/2015 10:11
Thank you for your replies.
emwithme Thank you, I have been reading a lot on the POTS UK and Stars website this week and it's ringing more and more bells.
Hi ben10 - long time no see! 
Sorry to hear you are have similar health issues.
I was told I had CFS way back in 1989/90, when I had my first major relapse. Then my next GP was fascinated by my symptoms and was constantly sending me for blood tests and trying different things, very keen to come up with something definitive that he could properly diagnose as CFS/ME, but of course in those days, there were no guidelines at all. When I moved to Lancashire I was in a really bad way, but the GP there told me I needed to pull myself together and go for some nice walks in the sunshine. 
When I went to see the GP here about something else and he saw how exhausted and depleted I was he immediately assumed stress/depression from having a child with SNs. Since then I haven't bothered discussing the exhaustion etc with doctors. I only went back when I started having the TIA-like episodes, because dh was really scared for me.
So, I've struggled my whole adult life, yet never actually been diagnosed with anything. I have just learned to pace myself and live around/with my difficulties as best I can. I'm very lucky to have an extremely patient and supportive dh, who does pretty much everything, including working full-time when I'm at my worst.
Now reading about POTS I am amazed how it joins all the dots for my symptoms and makes perfect sense, especially with being hypermobile and having another autonomic condition as well.
I am fortunate that dh has recently got a job that includes private healthcare as a perk. I have been resisting going to the GP, as I dread being told I'm just depressed or to pull myself together, but now I have something concrete to show them and I feel finally I may actually get a concrete, test result I feel more inclined.
Where I live appears to be an autonomic/POTS diagnosis and treatment desert. I think Dr Arnold Deering, Cheltenham/Gloucester is probably the closest, but he does sound very good.
I've been taking readings over the past couple of days and putting them into a table to show my GP. Haven't been able to do any today, because after two ten minute standing tests yesterday I've been feeling awful all day. Last night's was the worst, after my heart rate spiked to 54, by ten minutes I couldn't stand, my vision had gone and I was slurring my words. Dh was panicking I was going to faint on top of the dog, but I managed to flop onto the sofa just as the 10 minutes were up and within two minutes my heart rate was back to almost normal.
I've stuck it in this post - hope you can read it.
Aargh, random comma between 'closest' and 'but' and hear rate spiked to 154 not 54. 
How was it - did you have a 10 minute test or longer? I really hope you manage to get some answers - and more importantly some help/support out of it all.
I'm not doing at all well today. It was dh's birthday yesterday, we went out for lunch, then tried to take the dogs for a walk, but I couldn't manage very far at all (used to walk them 4-5 miles a day 
) then to the IL's for tea. I'm absolutely exhausted today and my thermostat seems to have gone wonky because I'm veering between too hot and freezing. Fortunately dh has taken ds1 to work with him and ds2 and dd have been really good, so I have been able to rest.
I'm still umming and ahhing about whether/when to go to the GP. I'm so scared of being brushed off, blamed or let down again and having gained a significant amount of weight over the past couple of years feel like there's a chance they may just use that as an excuse not to take me seriously. I wouldn't mind, but prior to this, just two years ago, I was slim, fit and feeling great. Ironically it was the MS tests that started my decline, hung on by my teeth for a few months, then the ankle injury, followed by the ?seizure and that was that.
Dh has serious concerns about me going for testing, mainly because he's seen me relapse really badly after medical investigations in the past. He's keen for me to try diet and floor exercises first and see if that improves my symptoms, if not then I can at least go to the doctors without worrying about them commenting on my weight or trying to use it as an excuse.
Really not sure what to do.
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