*Merlin*

A few years back, my optician was so disturbed by my weird pupil dilation that he asked if I was taking 'recreational drugs'!

Congratulations! To have confirmation that you have a healthy heart is always good news. It must be a relief to know that your POTS symptoms are just that and are not related to, or having a negative impact on, your heart. Sorry to hear you will likely have POTS for life (in the same boat here) but 'better the Devil you know' and all that! X

I think many of us are more symptomatic in the morning, circadian rhythm, low cortisol, etc. Bear in mind that, if you are hypovolemic with your POTS, and you have been without fluids overnight as you sleep, your blood volume may be lower first thing in the morning and, hence, your symptoms worse. I drink half a litre of salted water or electrolyte solution before I get up in the morning. Not the nicest way to start the day, but it helps my body recover more quickly from overnight dehydration and I have a better morning because of it.

Hi MomWithPots. It sounds like you have a similar lump to one I had the other month. I have CFS as well as POTS, so am used to the lymph glands in my neck swelling and subsiding. However, I developed one grape-sized lump under my jaw on the lefthand side. It almost seemed as though it was attached to my jawbone and felt quite different to any other lump I'd ever had in my neck. My GP gave me a course of antibiotics, but also booked me in for an ultrasound scan in 4 weeks time, in case the lump persisted. Luckily, it began to recede about 3-4 days after starting the tablets and hasn't returned. I do hope things improve for you soon, and that your lump turns out to be nothing to worry about. **Forgot to say, my GP attributed the lump to CFS, but said never to take such things for granted, always get them checked out if they don't go away after a week or so.

Could you have reactive hypoglycemia? It's not an uncommon symptom of POTS. Usually it occurs some time after eating, but for me it can even occur whilst I'm eating. My OH will have to grab the drink out of my hand or move the soup out of the way before I fall headfirst into it! Needless to say, we don't "eat out" any more ;-).

Well I'm 49 and, four decades on, I haven't grown out of it so far. Any hope for me?

Wow! Your story virtually mirrors my own, except I beat you by a year as my symptoms started when I was 8. I wonder whether, in my case, if I possibly have a genetic predisposition to the condition. I have been diagnosed with POTS and CFS. I recently read an article regarding Dr Light's Gene Expression Study. He and his team were researching the possible cause of CFS. During their studies they found a small subset of CFS patients. Of this group, 71% also had POTS. Their current line of thought is that stressors, such as exercise or viral illness, cause the gene mutation(s) to come to the fore and, therefore, symptoms to become apparent. Coincidentally, my POTS symptoms first appeared shortly after contracting chicken pox. They returned in my early teens after a hefty dose of whooping cough, then again after a bout of 'flu'. Now I'm stuck with them on a daily basis. It is clear just from comparing members stories on this Forum that most of us have very different tales to tell regarding the onset of their POTS, individual symptoms, severity, etc. One thing we all have in common is our non-stop quest for answers!

Sorry to hear such news Poohbear. Mum went through this and came out the other side 10 years ago, but she didn't have POTS. I do have POTS. Last week I found a lump in my breast. I went straight away to my GP, who found a second smaller lump close to the original one and a third in the other breast. Off to hospital on Wednesday for further investigation - trying to keep my nerves in check! Although you may well be an unintentional trailblazer right now, your experiences will be so helpful for others. I wish you all the very best in your journey. X

Wishing you the best of luck for a successful op and a speedy recovery. X

I can't tell you what's going on, but I have certainly experienced this. I had to quit work a couple of years ago. However, prior to this I spent a decade in a job which entailed a 4am start. During the first few hours of the day I would feel fine, almost "normal". By 7.30am, though, my symptoms would start to kick in and I struggled. Nowadays, although I can't work, I still have this early morning "window". This morning I was up at 6am and managed some chores. But by 7.30am, almost like clockwork, POTS descends and I retire to the couch. Sometimes I may be able to resume where I left off later in the day, most days I don't. I call this welcome interlude my "Pumpkin hour". Remember how Cinderella had to get home by midnight before her coach disappeared and her magical world returned to more miserable times? Well my party frock is always back in the wardrobe by 7.30am :-)!

Symptomatic from the age of 8, so 41 years - I'm exhausted!

TCP, I think that I have already decided that CBT is not for me. Aside from the actual "treatment", the clinic is a 4 hour round trip away and I don't travel well. I believe that I would find CBT somewhat patronising, bearing in mind that I have had to learn to deal with my issues for such a long time alone. From school age I have "adapted to survive" and think I've done pretty well, having been in constant employment until the last 2 years floored me. Finally, now that I am unemployed, unable to drive and have no life outside my home, they want to give me advice on how to cope with an illness the medical profession refused to even acknowledge I had for decades? Ha ha ha . . . :-D! Seriously though, I do worry about deconditioning. I hope to get back on my pilates machine sooner rather than later, but I will be dictating my own pace.

I was originally diagnosed with Chronic Fatigue Syndrome two years ago, after 40 years of ill health. Following TTT etc, that diagnosis was immediately replaced with one of POTS. I was encouraged to exercise regularly and maintain as "normal" a life as possible. My health began to deteriorate even more rapidly until I became virtually housebound, unable to work, drive or exercise (even recumbent). Last month my consultant decided that perhaps "we've" been a little hasty in dismissing CFS as being part of the picture. He now wants to refer me to a CFS clinic for CBT (hmm, talking about how rubbish I feel and keeping an "energy diary", that'll help for sure . . .). My point is that exercise is certainly beneficial for many with POTS. However, if you have other issues, like CFS (either diagnosed or undiagnosed), depending on what stage you're at, exercise (and by this I mean any physical activity that taxes your energy) can be extremely detrimental - as I have found to my cost. Each time I attend POTS clinic I'm half expecting my consultant to produce a magician's hat filled with potential treatments, rummage around and pull out something new to try. Little more than guesswork, none of which has helped. Currently, I am ignoring all advice. I'm resting, pacing and restarting my Mito Cocktail that I was told to discontinue 2 years ago. Oh, and absolutely NO exercise for the time being!

I think it has something to do with whether our cells are using aerobic or anaerobic respiration when performing a task and how efficient our body is at accessing and processing our energy reserves. Anaerobic exercise would require a sudden, intense response from our body, eg running up several flights of stairs. Aerobic exercise is of a lower intensity, eg walking, long slow running or cycling. I can manage a little of the latter, but the former is out of the question at the moment!

I bought a juicer a few years ago. It was such a pain to clean and there was so much wasted goodness in the pulp left over that I eventually gave up. A few months ago I bought a Nutribullet. I absolutely LOVE it. Super easy to clean, no waste whatsoever. I use it every day to get my greens, etc down me. I can throw in some nuts for protein and they're completely emulsified, no gritty bits. I have next to no appetite these days, but I can manage my Nutribullet smoothies no problem.