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Everything posted by *Merlin*

  1. A few years back, my optician was so disturbed by my weird pupil dilation that he asked if I was taking 'recreational drugs'!
  2. 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
  3. 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.
  4. 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.
  5. 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 ;-).
  6. Well I'm 49 and, four decades on, I haven't grown out of it so far. Any hope for me?
  7. 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!
  8. 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
  9. Wishing you the best of luck for a successful op and a speedy recovery. X
  10. 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 :-)!
  11. Symptomatic from the age of 8, so 41 years - I'm exhausted!
  12. 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.
  13. 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!
  14. 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!
  15. 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.
  16. I'm not. As far as I'm aware, reactive hypoglycemia has an entirely different metabolic cause compared to the blood sugar/insulin mechanism issues that diabetics suffer.
  17. Thank you all for your replies. I wish I could just politely ignore my neighbours. Unfortunately, they are our landlords. We are renting our cottage from them so it makes it awkward to refuse favours, even if they are taking a liberty. I just can't understand their sudden unfriendly manner after all these years. People, I'll never figure 'em out!
  18. For me, it did help. I have always suffered with "digestive issues" and, suspecting a food intolerance, consulted my GP. She dismissed the idea straight away, despite my symptoms, gave me a leaflet on healthy eating and ushered me out of the room. Ignoring her (quite frankly rubbish) advice, I decided to tinker with my diet. At first I thought it was a lactose intolerance, so I cut out dairy. Within 48 hours my eczema began to clear (along with a few other symptoms I'll keep to myself!). However, I still had regular bloating and abdominal discomfort. Months later, I decided to go gluten-free as well and, as if by magic, these two issues all but vanished. I don't care whether I have food intolerances or this is little more than a placebo effect, I feel and look better for it. I'm not as slave to it though, after all, a little now and then won't kill me. So if I'm offered some cake or a sandwich at someone's house, I don't like to cause a fuss and I'll accept without mentioning my dietary woes - I merely suffer the consequences later! I guess it all depends on which symptoms you are hoping to resolve. It has had no effect on my POTS, but has helped my digestion. I don't know if they are part of one related illness or two separate issues (and my GP has no interest in finding out so, no, I haven't been tested).
  19. I really feel for your daughter. It's a miserable place to be. I can identify with what she is going through somewhat as my illness onset was during childhood also. I'm afraid I cannot help with regards to drugs. However, something that has got me through numerous periods of insomnia is listening to audiobooks (the type of book and the narrator can make a huge difference, too). Even on nights where I barely sleep a wink, at least I feel rested to a degree, my mind having been solely occupied with listening to the book and not watching the clock, fretting that I was still awake. Lately, it's almost as though I've trained my brain to switch off when I put in those ear buds because I seem to be falling asleep much more quickly. I'm missing a lot of good literature though as I sometimes sleep through until the last chapter before waking to hear the final paragraphs, totally ruins the ending! I guess I am lucky in that my body is always so tired that I'm happy to lay down at night, even if I can't sleep. However, you say your daughter is up until 6am, or do you just mean "awake" rather than physically up and about? I always get up at the same time every day (6.30am), regardless of whether I've slept or not or how tired I may still feel. I will sometimes have an afternoon nap though if needed. It doesn't seem to affect how many hours sleep I will achieve later that night.
  20. Alison, I quite agree about lack of understanding. I never discuss my issues unless asked and, even then, skim the surface of the subject and quickly change the topic of conversation. Much as I'd like to "raise awareness", the reality of the situation is that I'm just wasting my breath. Lately, I found out that my sister-in-law has been ******** about me to family and friends. I have had gastroparesis since the age of 8. Forty years on, I am pale, weak and underweight. She thinks her brother could do much better than me. I'm just a skinny attention-seeker, I should just get over myself and eat properly. That's the root of my problem. The fact that my POTS symptoms first appeared when I was at a normal weight and I look the way I do not from choice but through life long chronic illness is lost on her. I don't even go there with her, my energy is precious and she's not worth it. But it still hurts, especially as she's nice as pie to my face. I was in a clothes shop last year when a group of teenage girls pulled me around by the shoulder, looked me up and down before asking "are you anorexic or what!". I felt so humiliated. Oh, and my cousin wants to know who gave me the two black eyes. Sorry, can't help them, they go with the territory. It doesn't help that I also have scolosis and my posture is poor. I used to do pilates which helped but now I can't manage it. I prefer not to go out in public anymore as I'm so tired of being judged and insulted. Hey, I just stay home and let my family do it instead!
  21. Oops, sorry :-P! I've given up angling for another dog, OH says no more pets. As it's nearly Easter, I thought I'd try him with the idea of another rabbit. We had our last house rabbit for 11 years, he was amazing. Hmm, service bunnies, it's a long shot I grant you but . . .
  22. I've been friends with my neighbours for the past 14 years. During that time they've witnessed first hand my steady decline in health. In fact, I worked for the husband for 12 years until he sold his business (at about the same time I would have had to quit for health reasons anyway). He saw me at my worst, keeling over, getting up, dusting myself off and cracking on, determined to live as "normal" a life as I could. Both he and his wife always seemed so concerned. Well, last year, after 4 decades of illness, I finally got my diagnosis. My neighbours were aware that I was seeing a new consultant and asked how it was going, so I told them my news and they seemed pleased for me. Thing is, ever since then our relationship has changed. They holiday frequently and I've always looked after their pets. This year they went away for 6 weeks, but instead of coming to ask if I would be up to the task (I really wasn't), she sent me an email 2 days prior to departure with the dates they'd be away for and a medication regime for their geriatric cat. An email. I live next door! No concern as to whether I would be able to manage. Well, I did what I could and my OH did the rest, between us we muddled through for the sake of the animals. They returned a month ago. Whereas previously I would receive a token gift for my efforts (a box of chocolates, etc), so far this time I haven't even had so much as a verbal "thank you". Six weeks in my state of health, pushing pills down the throat of a grumpy cat on a daily basis was hard going, a little appreciation would be nice! The other day I was outside brushing the yard (well, more like leaning on the broom and hoping it would push itself). Out comes the wife and shouts "Oh, you're not in a wheelchair yet then", laughs sarcastically and disappears!!?? I have been unable to drive now for about a year. OH does use my car from time to time as it's more economical than his vehicle, but it doesn't really do the miles it should to warrant keeping it. I hope one day I will drive again, but if I sell it now the opportunity may be lost forever - at least, that's how I feel about it in my head. Last week the neighbours asked if their nephew could use my car since I'm "not doing anything with it". They asked again yesterday, offering to buy it this time for half what its worth. Bear in mind that they are extremely well off financially, compared to myself living in rented accommodation and currently unable to bring in an income. Maybe it's just me but, given how much they know of my circumstances, I think my neighbours are being rather insensitive. I can't understand why they're suddenly being so mean. Any ideas?
  23. Does sound like reactive hypoglycemia, fairly common with POTS. Sometimes it comes on so quickly with me that I end up face down on the floor before I can do anything about it, although I never completely lose conciousness. I wonder if they train service dogs that can detect low blood sugar? Any excuse for a new puppy . . .
  24. I take Ivabradine 5mg twice a day (plus an extra 2.5mg if necessary). Pottering about, my heart rate usually stays below 110bpm. However, taking the stairs or walking up a gradient will quickly send it up to 140bpm+. I struggle to exercise at all at the moment, not even recumbent (if it wasn't for the cat sleeping on it, my beloved Pilates machine would be quite redundant!). The medication seemed to work very well to begin with but, 4 months on, the effect isn't what it was - back to the drawing board . . .
  25. Has anyone tried Viridian Sports Electrolyte Fix Liquid (100ml). It contains sodium, magnesium and potassium. Use by adding 2.5-10ml to one litre of water. I'm thinking of giving it a go but it would be nice to hear from someone who's used it. If not, I don't mind being the guinea pig, I guess :-)!
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