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blueskies

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Everything posted by blueskies

  1. Hi step, i used to get classic 'textbook ' migraines in the past too. Not predictable in when they would come, but predictable when it came to aura -zig zag and 'bits' missing from my vision. And duration of time etc., i look back on those days fondly. It was like that for years but as pots symptoms became more noticeable ( long before diagnosis) the features of my migraine changed. I went the whole route of all preventative and abortive meds for migrsine under the care of two different top australian migraine neurologists without much success. One med, an old generation antihistamine called cyproheptadine combined with a tricyclic antidepressant (can't remember the name)was effective prevention for me for quite a while, but eventually stopped Working. Naramig, a trip tan, worked well as an abortive but caused my erythromelalgia to flare. Then we found that ergotamine combined with dihenhydramine was an effective abortive for me but my pots doctor, who also is a vascular consultant ,pulled me off it when I was hospitalized with pots as it can be a nasty med if taken long term, apparently. Damages other parts of the body. Eventually, during that hospitalization I was put on opiates taken at regular times during the day,everyday, that keeps most of the pain, but not all, under control. I have been careful not to increase my dosage due to the addiction factor and my daily dose is in the very low range but opiates also have adverse side effects. This pain relief was agreed on by my neurologist, pots doc and a pain management specialist. Not perfect but certainly better than almost constant pain. I did read that a new migraine med should be available in a year and I will be interested to find out what it is. Hope this helps. Not suggesting that anyone take long term opiates btw. It was a decision I agonized over despite having three specialists telling me it was better to take the opiates than the non addictive ergotamine which they would not even consider prescribing for me. That was a bummer because the ergotamine also seemed to help with my erythromelalgia. Blue
  2. Bell girl, I agree with you on all counts too. At age 58, it's no longer about a cure for me. It's about the best life I can live in the time left to me. I'm also finding that family and friends of my age are starting to have health problems that come with aging so I'm not such an oddity now. And I also see their indignant responses to their experiences of how 'most people don't understand.' Something we here, all, got to experience way before our time. Blue
  3. Hi vermee Do you know all the things that you are so dangerously allergic To? I had my first anaphylaxis response about 14 years ago, when I was 44. Until then, when asked by any doc what I'm allergic to I used to be able to say 'nothing.' Now, I have many allergies, some not so serious, some life threatening anaphylaxis. Aspirin is deadly for me but other things we aren't so sure of. I have had the usual anaphylaxis and also anaphlactoid reaction ( which they are now calling non immune anaphylaxis. Which does my head in - how do I have an allergic reaction to something my immune system does not see as being a threat?) I've no education in things medical and I'm having trouble with this 'explanation' 17 anaphylaxis reactions this year sounds frightening and exhausting. You are the first person I have met that is allergic to meat. but I do know we can be allergic to anything at all. Sometimes I muse that while we poison the planet, perhaps we are, very rapidly, poisoning ourselves. But I am also aware that anaphylaxis reaction statistics, at least until now, have not been reliable. As in, causes of death in the past may have been put down the to heart attack, say, rather than anaphylaxis. Blue
  4. Hi step, in answer to your first three questions yes, yes and yes. In reponse to your last my head pain lasts. I've always got something going on with my head that ranges to tight band feeling, to sensations that my skull feels like it's making a cracking noise (possibly sinus) to 'head full of cement' feeling. I have chronic daily migraine, am medicated, but nearly every day I still get an hour or so of break thru pain which I am able to manage most of the time without extra painkiller but sometimes, the past 3 days has been an example, my breakthrough pain comes on and will not go away for 3 days no matter even if I take my pain pills to the limit of that which I am allowed. I get auras but I also notice prodromal signs that are not 'classic auras' -a slight change of visual perception that I can't quite put my finger on to explain, irritability and also anxiety. I will be having no pain when I get these symptoms but pain usually follows. The particularly long lasting migraines tend to make me angry. Not verbally or physically or anything, but my pain will often push me to remember painful actions of others in my past which I have to work at keeping out of my mind. I think it's response to the fear of knowing what the next few days of intense migraine is going to bring. Meditation during migraine has not been successful for me in order to minimize those angry feelings, although I am starting a new strategy of 'grounding' -resting the soles of my feel against a floor or pillow or something and feeling the sensation of the Floor. It helps to distract. During a migraine I will go from lying down to sitting up to pacing to baking (yep, baking a cake helps when my hands and face, especially my nose, are freezing at times with migraine as heat from the oven is soothing - my sister irons sometimes. At times my face can be hot and I can't bear anything warm near me.),and back to lying down etc. My changing responses can have to do with changing levels of pain and whether I am having problems standing, pacing, due to OI. I have all sorts of experiences with migraine now. About 4 months ago I developed tinnitus. If you haven't consulted a neurologist who specializes in migraine, I have told that the general rule is that if a person has migraine or whenever the migraine pattern changes it is wise to take time to see a migraine specialist. My neurologist ordered a head Mri about 7 years ago to make sure that nothing else was going on. From the results he could see nothing to worry about but did tell me I had more pronounced areas of white matter in my brain than is the usual, but that it is a common finding amongst chronic migraineurs. I took it to mean that I had enough white matter evident that there was no reason for him to doubt my perception of how often I got migraines. Blue
  5. I thought it was normal for heart rate to jump around a bit. Front 73 to 77 sounds normal to me. Someone please correct me if I'm wrong. I am far from a medical expert. But I've sat with a pulse reader monitoring me during hospital admissions and seen that pattern and I just thought it was normal. I still do. Perhaps someone with medical qualifications can set this straight for us? Sorry to hear that you are dealing with renewed symptoms, l free. Blue
  6. Just wanted to say that in the 8 years that I have been diagnosed I have experienced pots going form 'rare' (and most docs not having even having heard of it) to much more known (every new gp I've seen in the past few years because my gp was unavailable, away etc., has heard of it -although not a lot really know exactly what it is -yet. Blue
  7. My BP machine instructions say not to take bp readings one after another. That a gap longer than 2 minutes between readings need to be observed to get correct readings. Also instructions on home machine are to sit still, feet down, not move at all in order to get correct measurements. I think home bp machines are good for many of us to track our bp but they are not the expensive equipment that my docs and hospital have. Often I get the hrs increase and I'm feeling quite well. Sometimes I feel like **** and my heart rate can be fine or high. Also, in regard to symptoms, some symptoms come and go and some have become always present, in lesser or greater degrees, in my case. In my case my pots specialist has not ever placed much importance on pr readings (want to mention here that I don't get some of the extremely high or low measurements that some pots people get). It's all the other symptoms that make life so difficult that all add up to pots, that he pinpointed. For example, the first time I saw him he asked me did I sweat much. I remember my astonishment at the question. I told him that I hadn't sweated in 4 years. But what was astonishing to me was that I'd come to accept not sweating as being normal, not worth mentioning to anyone and was astonished by the 'bingo' sort of moment I experienced when he asked the question. I said to him that no doc had ever asked me that. Just this moment, as writing this, I went from reclining to sitting position too fast and not only did I feel a bit dizzy, i felt like I was going to vomit. The vomiting bit isn't normal, as far as I know. Blue
  8. Hi Sarah, Thanks for your thoughtful response. I am giving my situation a lot of thought. A time for action is called for. I am not in prison with all my rights taken from me although sometimes it feels like it. The 'woe is mes' is not working for me. No one is going to change how they treat me unless I change my attitude first. I think it was Eleanor Roosevelt who said something very similar, but in a much more eloquent manner. They were bright people, those Roosevelts. blue
  9. All of them cracked me up. I'm similar to Christy D's son. If I can have a bowel movement that's a good start to the day for me. I think I'd have to go with that sign. LOL. Now that's a sign I'd laugh with if I saw it in someone's yard. blue
  10. Thanks Sarah, my grandsons were sick on the day so my preparations were wasted. I'd organized everything and then was not the one to let everyone down. It was just unfortunate. They my son told me they coming on the Monday for the party, then the Tuesday (my son and daughter in law downgraded the celebrations to them just dropping in to visit with my husband and myself and so my 6 year old grandson could get a present from us. He was so disappointed and I've promised him a cake on another day. But I spent days expecting for them to be well enough to come and I had a whole lot of anticipatory anxiety- hoping that I'd be well enough to come through for them when/if the party happened. Plus my daughter asked me to look after her little girl -- not quite 2 years old for about 4 hours on the Tuesday and thankfully, at the last moment, I was told that I wouldn't be needed (but could I mind her for an hour or two next week (ummm. yeah?????). IT was no one's fault this happened but I was left hanging with this fear that I would disappoint, said yes but I wanted to say no. I love all my kids, and my grandkids delight me, but I can barely look after my most basic needs let alone take care of little grandkids. I have real problems saying no to my kids (and thus my grandkids). I know that my kids just don't understand how sick I get and, often, how much pain I am in. My frustration will leak out in bits and pieces and when it does I can see they don't want to hear it. But short of all sitting them down and telling them to stop asking me to do things for them, I'm not sure what I can do. My husband is not particularly sympathetic about this. And they tend to take their lead from him. He does help me out quite a bit at times and he is the breadwinner for himself and I. I don't minimize what he does do but I do struggle to have any quality of life now, and that neither my husband and kids understand this does get upsetting. When I was well my life revolved around my family. They had 28 years of me being there for them and looking after them. I realize what they expect of me. But I'm not capable of doing all I used to be able to do for them and it's like they have blinders on. Do they not see that I'm always in my pyjamas when they come to visit. And that I rarely go anywhere. This is not the woman my kids or husband knew for 30 years. Yet, I feel like they think I'm being capricious or something. I suspect that they really do think I'm just 'not that sick.' I don't expect my kids to look after me but I do want them to stop expecting me to do things and minimizing what I do manage to do, as being 'nothing.' I want to be the strong healthy woman they knew. Not only for their sake but my own. But it looks like this is just not going to hapen, and at age 58 it's not as though, even should I recover from POTS, and EM and chronic migraine, that I'm going to be the younger woman I was before I got sick. I'm 12 years older and at nearly 60 that time sees profound changes in the capabilities of even the most well of people. blue
  11. Hi Goschi, A similar thing happened to me, only it was my iron levels. I tested extremely low in iron and therefore was eligible for the camera test for free -- swallow a pill with a camera and they get to see your digestion tract from one end to the other. About a month later, just before I was about to have the camera test I requested another blood test and it showed my iron levels had returned to 'low of normal' ranger. I had not feel any better but I was suspicious about the first result. And right to be, apparently. I could have kicked myself because I was no longer eligible to have the test done for free -- it meant paying 2,000 dollars out of pocket and I'd already had a host of tests for my gi tract so I decided against having it. Years before I had a blood test come back saying I was menopausal when I clearly was not -- showing none of the signs that I was going through menopause that I was to experience in later years. I had a test the following year and my FSH levels etc, were back to normal.. I put it down to the fact that maybe the lab had mixed up my results with someone else's. But not sure why I was prompted to ask for a 're-do' of my iron levels, years later, just prior to diagnosis with POTS. As crazy as it sounds I came to think that perhaps, with POTS and whatever else I have, or may have, seems to do strange things to my body that go back to being normal. Etc. Not so crazy thinking, really, when I think about the craziness of pots etc. blue
  12. At my last test my vitamin d was 'very low' according to the doc. I've forgotten the number. I tried vit d tablets only to find they exacerbated my constipation problems to the point of no motility and so I stopped them -just about any med I try makes my gi system slow down to a greater or lesser degree. I can't go out in the sun because it my ERYTHROMELAGIA pain flare. Blue
  13. E. Soskis describes how I often feel. I'm nearly always too hot -- been diagnosed with ERYTHROMELALGIA, too -- but sometimes I'm freezing cold. I can go from waking with skin burning hot as well as feeling too hot internally on one night, to waking a couple of hours later in a cold gross sweat and I have to get up and change my clothes. i often have faster heart rate witih the feeling of being too hot. But pulse rate is fine when I'm too cold. On the list of pots symptoms on this site you will find temperature dysregulation listed as a symptom. You could try suggesting Raynaud's to your doctor. Some people find treatment that helps I think. blue
  14. Getting out of the water at the beach is when it gets hard for me - I feel a bit like I imagine an astronaut would on return to gravity. I can't bear heated pools, i get red and hot and I have read that the few inches above the water is a cloud of gasses emanating from the water that aren't particularly healthy for us. Try washing the smell off your body afterwards and it continues too linger quite strongly. Plus it dries the heck out of my skin. It has been noted that many of our Aussie Olympic swimmers have asthma suggesting the pools cause it. I'm not sure about this as the reason my kids did swim training was because they had asthma and the idea was to build up their lungs. And perhaps that's why kids who go onto swimming at international level have high rates of asthma - their parents took them to swimming because of their asthma. Blue
  15. Thanks Barb, I am so grateful that I have my wonderful sister. It's not like we see each other a lot but I know she's there to help me if I really can't work out how to manage something another way. And we talk on the phone so often. I have 'wicked' humourous text conversations with her too. We can 'talk' for hours -- texting back and forth on the state of the nation, the state of our families, the state of Bold and Beautiful, how both of us are aiming to have that -slim, lean, long brown haired Southern European look with fantastic style' when we are both overweight, Irish descent and I'm greying and spend most of my time in pjyamas, LOL. We talk books, the ridiculous social norms we all seem to live by. On and on. She keeps my mind active and engaged. And I spend a lot of time laughing with her. She's a light in my day, that's for sure. blue
  16. Hi Becia, I'm glad to hear that you've got your public housing and are getting a service dog. That's some good news. I don't fly anymore. I did for years post diagnosis but it seemed each flight usually got harder than the one before. Two years ago, flying to my daughter's wedding and back, well that was the last time - and I can't see me flying again anytime soon. I've flown with extreme migraine (because I had to get on the plane to get home). I've flown needing to spend most of the time in the bathroom which pissed off the other passengers because of the only small number of toilets -- and didn't they let me know I was 'selfish and inconsiderate.' I was so embarrased. Last time, flying to my daughters wedding in some resort that had been decided on -- none of us lived within 600 miles of the place -- well the whole experience was a stressful one. Instead of being able to focus on how gorgeous my daughter looked and what a happy occasion it was my focus was on 'can I sit long enough for her to be married in this church?' 'and take the frigging pictures already, I have to sit down. ' All in my head of course. No one realized what was going on inside me. Until after the actual wedding, just after we got to the reception I was sitting talking to a family member and went pale (apparently) my vision greyed out, the sweating episode came on so profusely that my mother of the bride wedding clothes were soaked through almost instantly. It was gross and I felt gross. And really ill. My son got me back to my room. The few days following which were supposed to be the time to go the beach and walk in the wetlands (ha!) I stayed in bed in the airconditioned room and tried to get my strength back to fly home. I felt more like I was going to the guillotine than just going home as I approached the plane. There was no sense of achievement when I got back from the wedding although I told myself there was. I got to hear, 'see what you can do when you really want to, you never let people down, why do you think this is going to happen.?' What's the point in explaining. I have this big family holiday coming up in September and although we will be driving I'm dreading it. But I worked out that if I don't go I will be left home alone for 2 weeks with no one to call on or visit me, do shopping for me or anything should I need it, and I'm actually more frightened by this prospect. Since POTS, I have managed to spend up to week at a time on my own. Although, I must say if I'd had a choice I wouldn't have chose too. The idea of me spending two weeks alone at home in the state I'm in at the moment is daunting. I'm not sure what I am going to do. Stay home alone or do the long drive and hope for the best. Already I'm being told I'm being a nuisance by not 'just' flying. These long haul flights/drives for a holiday just drive me crazy. Two hours drive from where I live is a beautiful coastal town where I can manage to holiday - when you mentioned a weekend in Columbus and how you'd manage it I could fully understand. blue
  17. Thanks for posting that Sue. I'm going to send the link to myself until I get my pots doc and gastroentorolgist's email address. I imagine they should be able to access it. Slow, often a completely stopped gi system, is one of my symptoms that i really struggle with and most things I try to help pots makes that symptom worse. blue
  18. thanks writerlymom and Rachel, Thank you both for your thoughts. And Rachel, you are right. I've been under a lot of stress. My father died late last year and one of my adult children is not doing too good -- he's extremely depressed and I am really worried about it. I'm trying to help him, but it's so hard to help an adult child unless they specifically ask for it. You can't insist that they 'must' come 'home' and be cared for. I just feel the help he will let me give is not enough. I'm not quite as low as I was this morning. I didn't feel quite so bad after I rang the cake shop and ordered cake and other stuff for the party for my grandson. The bloke who answered is French and I can only hope he gets my grandson's name right. I had to repeat it a number of times and even I muddled it up once (brain fog)And then I got onto the supermaket site and ordered the hats and birthday banners etc. I did make it to the gp next door and he remarked, first thing, how well I was looking. Then took my bp and pulse and got numbers he didn't expect given 'how well' I looked, although I certainly wasn't surprised. Rapid pulse rate, high bp (despite bp medication). He actually kept me there talking for long past the usual time allowance for a consultation --and meanwhile I was experiencing pre-migraine symptoms (that so far haven't gotten worse) and I was in my dark glasses and sort of sprawling in the chair to minimize having to be upright. Then he took bp and pr again and the numbers had gotten higher (from sitting while talking).I know he realized that although I might be looking good I was feeling like ****. So it turned out to be a worthwhile visit in that he's seen POTS in action up close and immediate. And now I'm back on the couch at home. I just feel gross. I'd like to have a shower but it's not going to happen today. Yuck? After a night with the cold sweats. On the upside, on the 'trip' to the doctors, 2 people commented on how nice my sunglasses were. Which I'm taking to mean they are so hot looking no one seemed to wonder why I had them on. blue
  19. Oh Smish, My mother and I used to go to yoga classes together about 14 years ago. I was fit, had more endurance than her generally, but she could do standing poses that I just could not maintain. The whole class of older women, I was the youngest at age 44 by far, could all do the standing and bending stuff better than me. When it came to sit or lie down I could rock those poses. Now I know why, like you. I just click the buttons for the items I need from the supermarket, and now I can make little notes to the people doing my shopping like, "If they don't have the beef mince please just throw any sort of mince into the trolley. Many thank yous." That way there is food in my fridge for dinner (although things will sometimes have to be migrated to the freezer if it looks like I'm not going to be well enough to cook it). And when the delivery blokes come and put all the shopping on my floor they always get a tip and an offer of a cold drink if it's a hot day. After that, all I have to do is get the cold stuff into the fridge so it doesn't spoil and the rest of the shopping can wait until I have the strength to unpack it. I'm not very good at clothes shopping on the net. But I wouldn't do gift shopping any other way. I worked out some time ago that I'd rather go to the park, if I am up to it, than wander around a shopping mall. blue
  20. I've been here before and worked my way out of it. By the grace of the gods and as well as determination. Today I need to go down and organize a "6" birthday cake for my grandson as well as party food and colorful party plates and cups and Happy birthday banners, and I have realized that I just can't do it. I'll be lucky if I get to my gp appointment and he's in the building next door. Everything has ground to a halt, again. I had the cold sweats all night alternating with skin burning. And it's not a virus. I'm frigging housebound again with pots and I recognize this place because I've been here before. The long slow slide this time has ended in a wall. And I've seen this wall before. And my husband, who is already impatient with me being ill, is not going to like this one freaking bit. He still thinks I could 'just do it' if only I wanted it enough. I feel like shite. If I had cancer, i suspect that some people, at least, would understand. But this is just me being difficult and not trying hard enough and maybe a little bit crazy. I've heard all these judgements. From people who love me, no less. To the peole i love in my life who will never read this: I get it.It's hard for someone you love to have a long lasting illness because then, if you don't turn up to help occasionally, or just to visit, well then....you get to feel like you aren't being kind and caring. So it is better to accuse them of it being their fault and within their control. Even if you don't say it out loud, it is in your manner. The way you talk to me. With dismissal and disrespect or worse, silence. That way, you don't have to feel bad about yourself. I so 'get'that. But I have a wonderful sister who does try. Of all the people whom I love, she is the one who has succeeded in being kind and caring. And she insists that she gets more from me than she gives to me. I know that isn't true. But I love her more because of her determination to make sure that she knows I matter. And that the person I was for 46 years did not suddenly become crazy, lazy or weak of character. 12 years of this stuff and she remembers the strength of my character, and sees it still. She knows that my inability to do normal everyday stuff is not some capricious choice I have made. I'm not sure how long I'll be down. I would be crazy if it didn't occur to me to worry if this is my new normal permanently. I can only just hope it is not. Blue
  21. Yeah, the feet up is how I always try to sit. For POTS and ERYTHROMELAGIA -reasons. I have read that crouching helps some people but it's not a good position for me. Even years before obvious POTS SYMPTOMS manifested, i found that trying to stand up after crouching would lead to rapid heart rate on standing and feeling faint. I was very fit, worked out regularly, so that was not the reason. I knew it was weird at the time. It used to happen in bookstores especially, when I'd want to look at the books on the lower shelves. I started to sit on my bum to peruse those books. When I was able to do those big supermarket shops I'd just sort of grab at what ever I needed when they were on the lower shelves. I sort of tried to bend sideways. On the occasions my husband was with me he would get irritated when I would grab an item but cause another to fall to the floor. He has never understood that I found it hard to bend down fully and then stand upright just to get the item I needed. He preferred to think that I'd suddenly developed a careless attitude. Most of my super marketing is now done over the net. Blue
  22. Hi Smish, That was/can be my experience exactly .I had given up with eating out. But a couple of weeks ago I tried again. Expecting the same result. I didn't experience the 'anxiety' stuff, though. After 10 to 15 minutes of being quite bright and participating in conversation I started to yawn, go brain foggy, and know I looked like I was sleepy and probably bored. I was falling asleep but I wasn't bored. I wasn't bored. I really wanted to be there because it was youngest adult son's birthday lunch and he's been very depressed lately. I'm extremely worried about him. He noticed and said 'mum looks tired.' I just said I had not gotten enough sleep the night before, ( which is always true), but that I was enjoying myself. No point in trying to explain POTS stuff to them. But I felt I had failed my son, during what is a critical time for him, even though I couldn't help it. Guilt and POTS - that old combination. Blue
  23. My experience post laminatectomy 3 years ago has been worse, bit better, worse, bit better, worse etc. For the past 8 months I've pretty much landed in a heap. But although I feel the surgery is definitely a factor it's only one of a few. My Erythromelagia has gotten worse since that surgery and that has made everything else harder to deal with. Plus medication to lower bp is increasing other pots and erythromelagia symptoms. Blue
  24. I'm 58. I was diagnosed just in time for my 50th birthday. I had strong symptoms for years before diagnosis! and before that, intermittent symptoms from probably age 18. I was greatly disappointed because the reading i had done had indicated that when menopause was finished I should see an improvement of symptoms. I was told by another potsy that Dr Grubb told her that she would possibly see an increase in symptoms during her menopausal years. I was prepared for that and was thinking I am worse because I'm menopausal. But that has pretty much passed and my hopes in that area dashed. I have gotten worse. My pots specialist told me just recently that I most probably have mitral valve prolapse. I'm waiting to see him post having an echocardiogram but to be honest, because of his confidence in the MVP diagnosis and my experience over the past few years of tachycardia increase (frequency) and other things.... well I will be surprised if I don't have it. Although, i guess That will just mean pots has become even less manageable. Blue
  25. I find sitting with my feet down is nearly as bad as standing up. It takes longer to have this negative effect but when the effects start to happen they are horrible. Not so long ago I realized that everything When I'm sitting with my feet down I unconsciously tense/curl up my toes. I think it's my bodies way of trying to flex feet and leg muscles so it can keep the blood pumping -although not very effectively, given how I feel after a while. I no longer catch buses because there is no way I can sit with my feet down in such confined leg area. I start to fee L familiar symptoms and when it's time to get off the bus I struggle to stand up and stepping off the bus often means I'm trying very hard to keep balanced and I experience that sick heart pounding unbalanced feeling. In a car I can stretch out my legs and move my feet and don't have that problem. I look at really elderly people waiting in chairs like this, or standing in line at a supermarket or somewhere, and am amazed at their fortitude. But I'm also really pissed off that this world is generally designed for the young and healthy in a world with an aging population. You are doubly damnned if you are disabled in some way. My heart goes out to the people in their teens and twenties who get to have to deal with this crap way too early in life. Blue
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