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Everything posted by blueskies

  1. thanks Peregrine, They aren't concerned about rebound migraine. I have bought this up with them. Some years ago I stopped all meds for migraine for 3 months because I had read about rebound headache. It was something I did on my own. The pain was very bad most days and at the end of 3 months I had the same pain pattern as I did at the beginning. I told my neurologist that I had stopped all pain medication for migraine and he told me not to do so again. He was concerned about the pain pathways. But thank you for your concern, blue
  2. Yes, the migraines are giving me a bit of a hiding too. Migraine and Erythromelalgia (which is supposed to be a separate health problem from POTS but I've found a few people with POTS that have Erythromelalgia as well). blue
  3. I'm once again overweight from 4 months on a medication that is known to cause weight. Last year I lost a whole lot of weight which I had put on due to another medication. A lot of the excess weight just dropped off me when I ceased the medication, and what was left I was able to diet off - most of it (I have never returned to my pre pots weight. My weight has gone up and down over the years but I've been heavier now for some years). But fat or thin, in the morning I can get up with a relatively flat stomach and by afternoon I look about 5 months pregnant and can't wear anything with a waist band although I could in the morning. By night time I look about 8 months pregnant. And it is very uncomfortable. My pj pants bite into my stomach, yet in the morning they are loose around the waistline. I am post menopausal so for me it has nothing to do with cycles. And it is the same day after day. No matter what I do and don't eat, and even if eat very little that day. When I was able to do pilates it was not as bad -- I had abdominal muscles that seemed to act like a natural girdle. But pilates is out now, and has been for some time. It's 1pm now and my stomach, which was relatedly flat a couple of hours ago, is now bloated. Sitting with my feet up is starting to get uncomfortable and I'll need to lie down soon because of it. I have always experienced some bloating by the end of the day but since POTS really made itself known to me some 14 or so years ago it has been much much worse. It's very uncomfortable but it's not going to kill me. Still, I don't feel good about it. bluee
  4. Ps. We holidayed by the sea last winter and I was able to stand thigh deep in very cold water and help my little grandson learn to boogy board. I was able to do this because the compression qualities of the water were keeping me on my feet and helped me expend quite a bit of energy. it was a wonderful half hour spent with my grandson. My adult kids just looked on wondering how I could stand the cold. But the cold was nothing compared to being able, for a little while, to have fun and also help my grandson do something he really wanted to learn to do. When he got dumped I (a small wave for me, a big one for him) I was able to reach down and lift him out although not without effort. There is no way I could lift my strong 6 year old grandson while on dry land. blue
  5. I once read a paper by a doctor about the compression qualities of water and the benefis of swimming. The paper may have even been on this site, but it was years ago now and I wasnt able to find it here last time I looked. Anyway, my take (i have a hard time reading/understanding even remotely scientific papers) from it was that that the compression qualities of water help our muscles pump the blood around our bodies. Personally, I was doing so much better when I was swimmimg regularly. I never felt my often rapid heartrate to be rapid while swimming. Migraines would often clear up during a swim. I felt 'normal' while in the water. The only warning about swimmimg that I remember reading in that paper (there may have be other warnings but I cant remember) is that people who are prone to fainting should never swim unsupervised (I dont faint, knock on wood). We moved away from the beaches about 5 years ago now and I have seen an increase in severity of many of my dysautonomia symptoms. I dont have a car and have no way of getting to the beach. I do think that some of my decline healthwise has been to do with not being able to swim. I have done other forms of exercise in the past 5 years (although virtuallynone in the past year as my erythromelalgia problem has escalated) but they were not as successful as swimming in regards to helping me feel better. blue .
  6. HI Hanice, I loved the colours of your painting. I felt happy when I saw it when the dropbox opened. Thanks for that. blue
  7. I also take a senna product when I absolutlely have too. It's a mixture of senna and coloxyl. It will work after a few days. I need to take 3 pills in the morning and 3 at night. As I said, eventually it works to empty me quite a bit but the cramps are pretty dreadful just before it works and while it's working. I can spend a few hours on the toilet. Which is a bit of a problem given that we only have one in our apartment. I have to 'reserve' the toilet. And I get anxious when it starts to work. Last time my daughter and her husband dropped in and I spent the whole time on the toilet and they could not use it which was pretty embarrassing for me. I try not to take the coloxyl and senna too often as my body will now occasionally have a normal bowel movement or close enough to normal that I feel comfortable. Lately I've been taking the senna product for the 3 days about every 2 weeks. I've tried everything else and I have found this to be the best of a bad lot of choices for me. Nine and half years ago, my bowels stopped completely and I really struggled to get things to work for many years. But the problem is not quite as bad now. It's not good, but it has improved. I hope it improves for you, too. I am glad you are seeing your gastro doc next week. I hope he can come up with something that can help you. As for food helping. Nothing helps me for long. I can't eat whole grains etc as they will block me up and cause me lots of abdominal pain. I do try to eat pears as they are soluble fibre and gentle on my stomach. Sometimes changing diet can shake things up. A week and half ago I started eating vanilla icecream (it's summer where we are). I also feel way too hot all the time (combination of POTS and Erythromelalgia) and sitting in front of a fan and eating icecream helps cool me a little. I was eating quite a lot of icecream each day and my body responded with almost natural sized bowel movements from day too. Go figure, that high fat and sugar could cause this. (I'm not lactose intolerant). But, I am not sure if it's because I've cut back on the amount of icecream I'm eating each day or if my body has got used to it (this happens to me, I've found) but the bowel movements have stopped and I'm contemplating taking the senna stuff again in the next day or two. blue
  8. Hi artluvr my body can't tell the difference between good stress (excitement) and bad stress. I have read of others that feel this too. It means I have to sort of turn the volume down on my reactions to things. Dampen my joy. Even laughing too loud or enthusiastically can cause my pots symptoms to ramp up. I have to live moderately and to feel things moderately. Oh, crying is something I rarely do as it will also bring on more intensity of my symptoms. Crying used to bring me a sense of relief, a release of emotions. Constant worry over a family member led to me crying/weeping last week. I really tried not to cry, and with good reason. I ended up with more OI, a migraine that won't quit and nausea. Feeling excited in a good way about something will do the same. Muted joy is what I aim for. blue
  9. Hi goschi, I am glad to hear of your improvement. Respectfully, improvement will not come for everybody. I am 59 years old. I was flattened by pots at age 46. 4 years later, aged 50, I was diagnosed with pots and other illnesses. A few months ago i was told by a top doctor (the one who diagnosed me and originally told me that i would get over pots with time and effort) that my pots is with me for life. So, from 46...... I was not young but not yet old either. I had come to sort of suspect that pots may be with me for the rest of my life. But it was tough having my suspicions confirmed. I remind myself that there are worse things. However, I am happy for you
  10. Having just posted, I went back and read gjensens post and I think its a good one. W e are all different. And my experience is only one experience. blue
  11. Hi, I cant take movicol (aussie version of mirilax, I think) because polyethylene glycol taken at doses that make my bowels work also gives me migraine and erythromelalgia flares, more dizziness and confusion and a worsened lack of energy - it flattens me. But it is present in other meds I take and doesn't seem to cause me problems - I guess its because it is a much smaller amount. I do react to other things in some meds - such ad sodium glycollate and quinoline/sunset yellow as well as have a problem with e133 (brilliant blue) which can be in some foods and meds. Although I have to grin and bear the negative effect of e133 in one of my meds because the med itself helps me and there is no colour free alternative. I avoid anything with e133 in it but this one med. I believe e133 is banned in europe. it is interesting to read that polythylene glycol, which seemed to be thought of quite begnignly when it was first introduced, is now attracting its critics. I could not cope with taking it from day one for my ongoing constipation. And I experienced horrible reactions to it each time I retried it. blue
  12. There are times when I do accept being ill to a degree although i could hardly call it graceful acceptance. There have been other times when I have been overwhelmed, fearful and anxious, angry snd felt worthless. Then my youngest son (he is an adult) became terrifyingly unwell with a deep depresssion. I was terrified he would take his own life as my brother did many years ago. Thank heavens that he seems to be a bit better lately.. Since he became deeply depressed all that I have asked for from my body is that I be well enough to be able to help him. And so far my body has corporated. I am extremely grateful for this. Apart from thinking thoughts like, "please dont let me down, body, because I cannot let my son down " my thoughts have been with my youngest son and with my two other adult children both of whom are now struggling with health problems. It certainly helped to put this mothers own illness into perspective. I think I have had some grace bestowed upon me. In that, since the challenge of my son's depression I have caught a break of sorts - for which I am grateful. Not sure that I was ever the type to manage to accept any illness gracefully. I could accept things, but it was more of acceptance in a fatalistic way. Now I am just grateful when my body behaves itself enough so that I am able to help those I love.
  13. I do badly with twilight medication. And during the past year and a bit, dental anaesthesia (even without epinephrine) has become a problem for me. I have many med sensitivities and also a number of med allergies. I seem to do better under general now. I need lots of iv fliud before hand to counteract dehydration from fasting. The only real 'nasty' I get from a general now is uncontrollable shivering and muscle jerking (and lots of chattering of teeth) which starts not long after I come out of anaesthesia. It is unpleasant (and I dont know what causes it but i have benn told it happens to other people too) but once that passes I am quick to feel better. Unlike with twighlight and local snaesthesia, which cause my erythromelalgia to flare in the hours afterwards and the flare can last for 3 to 4 days to 5 days. I used to dread general anaesthesia. But once I was diagnosed with POTS and learned about dehydration I was quick to ask for iv fluids upon arrival at hospital before proceedure. That, and having the surgeon AND Anaesthesiologist contact my POTS specialist before to become better informedabout POTS, hand has really helped. Blue
  14. Eating the foods that help cause my erythromelagia to flare often eases my gastroparesis. Indeed, eating all my 'wrong foods -- those that I am intolerant to', can make my whole digestive system work almost normally, for a while. Some times I have to choose between hot, red burning skin (that's the erythromelalgia) and a digestive system that works. Usually I 'choose' to have the gut pain, the feeling sick and the constipation over the erythromelalgia. But sometimes my whole gi system is so backed up that I will chose to have my skin burning and eat the foods I normally avoid. It's a **** of a decision to make. And usually I can't let my skin burn too long. Wish I could, because eating all my 'wrong foods' means I have better digestion -- not perfect, but better. Zofran, while being great for nausea, closes down my whole digestive system, I have realized. When nauseous I try to make do with semi sparkling water and weak tea with sugar. Zofran works much better for nausea but I pay for it the next day and for days after. blue
  15. Because I had figured it out myself that at age 58 I was highly unlikely to recover from pots. I saw my pots specialist last week, and he told me that tests had shown that I did not have mitral valve prolapse (as he had thought was the case, after the prior visit with him). Nor inherited the dialated cardiopathy that runs through the female line.my mother has it, all her sisters have it except one. So hopefully it will end with her generation. He told me that tests showed I have a very good heart for a 50 year old and when I told him I was turning 59 this year he said 'even better' . It is reassuring to know that i have a heart that is handling all the tachy I experience. I must have looked a bit too celebratory, lol), because he quickly followed it up with the info that my pots was 'for life.' I was not surprised as I've dealt with it for a long time and had pretty much realized pots was not going away for me. I had just accepted it. Finalky. So him telling me that was, in a way, validating - not quite the word I was looking for but it will do. blue
  16. After I take and swallow a bite of food I have to have a sip of water to feel like the food has gotten down. I'm nearly 59 and for the past year ot two I've noticed that i often now have to wash the food down to stop a choking sensation. Sometimes I have trouble getting fluid down - it is a sort of lack of coordination in swallowing. If feels like muscls in my throught are out of sync or something. So far it hadnt stopped me eating - often eat too much but food i chose now is softer. Eat way too much of homemade icecream (it sort of slides down the throat) when I'm having a very tired day and dont want to be bothered by the whole ' having to think about act of eating' while I am doing so. blue
  17. Hi fried brain, loved the 'head going to explode' description - although I'm sure it feels terrible. I was sitting in a chair near the window with my head resting on my arms and arms resting on the sill to get some fresh air. Hubby arrived home from work and assumed I had a migraine. I told him no, not this time, that my head felt like it was full of wet cement. He's used to my weird sounding decriptions. blue
  18. 2 and a half days without migraine is s good sign. Yay for you! A promising sign, perhaps, that the amitrypatine will be your answer as you achieve a steady state of it in your system. blue
  19. Interesting article, katybug I had a sleep study done 6 or so years ago. Along with finding that I had positional sleep apnea (now treated) they also noted that I had alpha waves sleep when I should not be, but they shrugged it off. I struggle to get to sleep at the best of times. But the alpha wave thing really makes sense to me. I still wake feeling exhausted. Plus I have many nights where I feel halfway between sleep snd awake and it's a horrible feeling. Add that to myoclonic jerking and epidodes of sleep paralysis, and increased erythromelalgia pain during the night and nights are often a three ringed circus nightmare. Not trying to win the worst sleeper award here, I know many potsies find it hard to sleep or have to sleep excessively and still waske up tired - alpha wave intrusion could certainly account account for disturbed sleeping, in my opinion. blue
  20. The buzzer in my apartment (I live in a security building) goes off snd I leap every single time - it feels a lot like an electric shock. I keep gently reminding my husband that perhaps he could replace it with another with a gentlersound. I came close to ripping it off the wall the other day but instead used my energy just getting to the **** thing to let someone in. Becia, no doubt you have probably thought about it but perhaps online supermarketing is available where you live? I use it, and it relieves me of the pressure of grocery shopping. I order it online, pay by card online or when they deliver, and the delivery people carry it up two flights of stairs, into my appartment, and through to the kitchen for me. Then I get to complain about having to unpack it - at first I'd forget items I needed or accidently order the wrong amounts but now, some years on, I get it right 99% off the time. Now I can log into the site and do my shopping and log out in 10 minutes or so. It did take me a lot longer when I first started, though. My local pharmacy will also deliver my meds and stuff - although mostly I go out on a good day to pick them up. blue
  21. A couple of the newer generstion antipsychotics in small doses may help too. Zyprexa and seroquel are the names I can think of. Both these can have very significant downsides though. Ergotamine was effective as a rescue med for me but I was taken off it as it can have concerning side effects on the heart. It is still prescribed in australia I believe, but no longer available from a normal pharmacy - I used to have to have a compound chemist make it up. I was advised at age 50 that I needed to stop it. I had not taken it for that long but potential for heart or valve damage (am now vague about which part of the body) was seen as problematical given my age. The doctors also thought it had caused me rebound migraine but when withdrawn, and after many monghs, they saw the rebound theory did not apply in my case. I was now a 'chronic daily migraine' sufferer. I kind of remember that the ergotamine tablets also contained dypenhydramine and caffeine. Due to tachy I had to have it made up without caffeine as I found as my body could not tolerate it at the time (I can now have one or two half strength coffees a day - yeah! And they can help me a little with migraine pain sometimes.) I have a list somewhere katy, of all the migraine preventstives I've tried. I just cant find it (I'm hopelessly disorganized) but if I do find it I will post the list here.
  22. Hi gjenson, from my experience it sometimes is not the actual drug that can cause mast cell activation, but one (or more) of the excipient ingredients . It can be the drug, of course but not always. I have found some fillers and colorings to be problematical. The excipient ingredients in the same type of pill can be different from one manufacturer to another, I have learned. I want to want to make clear I am not a doctor or chemist - this is just a bit of what I have learned about mast cell overaction in regards to myself. I have an allergist and she has been extremely helpful over the 10 or more years that I have seen her. She was that good that she was the one who suggested I also see another spcialist she knew of. I did, and that specialist was the one who diagnosed me with POTS and ERYTHROMELAGIA 8 - whoops its 9 now years ago, now. I tend to lose track of time passing. Until I look into tge mirror and see my getting older face, I have developed many allergies over the past 12 years. I also have adverse reactions which can be painful and nasty but so far, not thought to be life threatening. I have not developed an allergy to an antihistamine - knock on wood. I have read about it happening, though.
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