blueskies

I don't mind my neighbours having a loud, good time. They are doing so now. Good luck to them. But on the days when my frequent breakthrough migraines are present I don't think of my noisy neighbours so benignly. LOL. Truly, with a migraine, noisy neigbours having a good time can be a curse. When I lived near the beach and my dog was alive, the nights my neighbours decided to party I'd take my dog and go lie on the beach on a towel and cushion and listen to the waves hitting the shore. Truely healing medicine. I need to get back to living near the beach and also to getting myself another dog. Those two things and getting myself a little car to get to and from appointments and things are on my 'list of necessary things.' -- my road back to happiness I think. blue

Hi, The migraine comes on after I've stood too long -- pushed myself too far. It will occur later in the day and last about 3 days. They used to last 5 days. From what I've understood from docs migraine and headache are really both the same thing. There is 'classic migraine' but you can have a terribly painful headache which is not classic migraine but every bit as painful and considered migraine. It might just be a case of semantics. blue

oh I forgot 'fat meds' hormone therapy for menopause -- put on about 30lbs and had to stop ht but never lost the weight -- lost some but never lost all the weight. courses of Prednisolone (cortisone) -- also put on weight and find it hard to lose - always seem to be left with just a little bit more weight. psychiatric med -- I stop and start it and it causes weight gain and I don't lose it all when I'm off it. -- Cyproheptadine - an antihistamine which also helps a bit with migraine control (often they treat teens with it) but also stimulates appetite -- it's med they sometimes use to treat anorexia nervosa because it can make you very very hungry and it does make me very hungry and eating too little is not my problem. I'm starting it again because migraines are getting more painful again. It stopped working but can start working again after a 'holiday' from it. blue

I've gained a lot of weight. I was normal, healthy weight and very fit when my pots sympptoms hit hard (had symptoms many years before diagnosis but then they got very bad and it was obvious to docs there was something wrong with me --- not 'all in my head' -- but still I waited about 4 years before I was diagnosed with pots which not being terribly medical literate I had never heard of such a thing but then again neither had many docs back then). I gained quite a bit of weight when the symptoms hit hard -- I was big into exercise prior and going to lying/sitting most days and bored out of my brain ate way too much. Then suddenly I lost a lot of weight and got really really skinny for a couple of years and could not eat very much at all. Then I started to gain weight and was about normal when I was diagnosed. Then I resumed exercise but my weight started to climb. This was due to a high fat, high sugar diet. I was, and still am, stuck on an elimination diet that helps with some of my symptoms but it is high fat and high sugar -- mainly because the only fruit I can tolerate is pear and the list of veges I can eat is very short and it bores me to death but also because any fibre type food tends to cause me a lot of gut pain. I was okay weight -- a bit too much for my height but okay health wise -- when I ate the lower calorie version of the diet but eventually I just couldn't do it anymore and now tend to eat too much high fat dairy and sugar but not enough to explain my big weight gain. I do exercise on my good days -- walking (swimming when I can) but being rather sedentary and not being able to diet as my gut does not hurt as much eating dairy but also just don't have the iron will to put up with gut pain from vegetables and grains. I'm currently cutting back on sugar but as sugar and salt and a little chives or parsley are the only 'flavourings' I can use it's pretty hard. I've also been drinking skim milk to help with try to lose weight but my weight has still been increasing. I've been researching this and there is some evidence to show that drinking full fat but less of it is a better way to lose weight. I just realized that when I say 'high sugar diet' it's probably not as high as it sounds. I cook and prepare all the foods I eat so there are no hidden sugars in my diet but i do use sugar to sweeten things a bit. blue

http://fedup.com.au/stories/2013/1173-mast-cell-activation-disorder-january-2013 Hopefully this link works. Although the link does not actually show the diet the topics listed on the right should enlighten anyone that wants to get an idea of the diet I follow. If you are interested enough to try it please remember that you really need to do it with a dietician's guidance and also, as they didn't know then, not stay on the diet for too long as it may make you more sensitive to foods, not less == as has happened to me. blue

It can be such an unsocial illness. My hubby is home. My daughter has arrived with my little granddaughter. Enough stimuli, right there. My sister -- who I love dearly and is my biggest support -- is due to arrive any moment. That feels like too much stimuli. Too many people in one place. I am anticipating too much noise and it's already starting to make me uncomfortable. I know my family. Voices will rise to be heard. People will talk over each other. And I will just shut up and be quite as possible. blue

Yes, I started the Royal Prince Alfred Hospital (Sydney, Australia) elimination diet about 10 years ago. It helps with my burning skin problem -- it feels like my skin is burning at times, and can look red and sunburned and sometimes it hurts to wear anything but these really old clothes I keep for these bouts. I think it's due to 'natural' and 'artificial' pesticides (there are natural pesticides called salicylates that fruit and veges contain -- not sure if 'pesticide' is the right word but the salicylates are a naturally occurring chemical that works to repel insects etc), also amines, and glutamate (the original form of msg). Plus preservatives, artificial and natural flavourings and colourings. The problem is that when I started the diet 10 years ago they did not know that a small percentage of people can become even more sensitive to the foods they are eliminating and they have a very hard time getting back to a somewhat normal diet. Any elimination diet should be done under supervision of a dietician is my opinion. I wish I had done so, as they advised, because maybe I would not be so sensitive now but I just wanted to stop the burning so went ahead and started on the diet without being fully informed. Or as fully informed as they were at the time. I think I've managed to sensitise myself further by being so restrictive with so many foods. blue

We moved about 10 months ago, now and I don't have any mould at this new place. I used to have really bad sinusitis. I had two operations on my sinuses to enlarge sinuses of the face both sides of the nose, straighten a broken septum (which I could not see looking at but it showed up in x-ray) and remove a nasal polyp. The first op didn't work, the second one did and I went sinus problem free for 10 years but for the past years sinusitis is back. My teeth and gums are dreadful and I try to look after them well with brushing, flossing and using interdens brushes and have done all my life. I have missing molars, caps and lots of mercury fillings. I sometimes wonder if the mercury fillings are causing all this illness but the ADA (Australian) officially denies any thing wrong with these fillings. Or at least they did, when I last looked some years ago. Blue

Besides the ground feeling like it is dropping out from underneath me I also have episodes when it feels like I'm trying to pull each leg out of quicksand as I walk. I know I'm walking weirdly then because I start lifting my legs from the knees -- straight up. I'm sure it must look like some kind of weird marching. I also get the swaying stuff when I've stood too long and it can happen when I've been sitting with my feet down, too. I always ask my doc about any new symptom. Just to make sure I'm not attributing something to POTS that could be something else. But I'm 57 now and it's wise I do this. blue

Hi Justin and welcome. I've been dealing with this long before I was diagnosed with pots. Sensory overload is hard to deal with. I started a new med recently and it's making my OI worse -- but I should adjust I've been told -- and last Sunday I was in a library having walked there on an overcast day with my sunglasses on (I wear them everywhere)when I felt off balance, felt one of the big tall shelves fall forward slightly towards me and then needed suddenly to pee. Weird I know. I managed to check my books out, but the walk home which usually takes about 10 minutes, maybe took me about an hour. I had to keep stopping and resting despite wanting to be as far away from the traffic and Sunday walkers (out in force) as I could be. It confirmed to me that I'm moving out of the inner-city where it's very busy and back to the sea-side. I just can't cope with the population density. At home I never turn on over head light. I use lamps and they have low wattage. Drives hubby crazy but after years of me switching off the overhead lights and turning on the lamps he's finally given up. He has a study where he can sit and read to his hearts content with a bright overhead light on. I had thought of earplugs but not tried them. Traffic moving past me also sets me off or makes spells worse. Crowds moving, noise is terrible. I can stop for a coffee in a quiet coffee shop. Or if busy we will go to one with outside seating. It's not just that I can't handle the noise and movement and light -- I just can't hear what people are saying to me when everyone around me is talking. I can't pick out there voice even when I strain to. I think my sunglasses could do with the addition of blinkers too like horses wear. LOL. Movement in my peripheral vision can be a problem. I so wish they'd stop making flouro lights. The medical profession now realizes that migraineurs will often be able to pick up the flicker. Horrible things blue

Hi, I just looked it up and in Australia recommended daily intake of thiamine is 1.1mg. (seems low going by the numbers issie and carrie are on? But I've checked two sites. I'm get 20mgs thiamine in my vitamin tablet each day. According to the Royal Prince Alfred Hospital in it's Elmination Diet Handbook people with food intolerances and medical intolerances should avoid megadoses and also, btw, PABA -- which are found in some vitamin tablets, apparently. When I spoke to my allergist a few years ago about taking megadoses of vitamin c in an effort to help with constipation/colonic inertia she told me not to do it, that I could have a reaction. So, guess I'll have to be careful about upping vitamin BI. blue

Excellent article and a LOT in there for me. I'll need to read it a few times to take it all in. I'm wondering if when they refer to 'simple carbohydrates' they are including fruits and vegies and milk as well as the nasties such as soft drink (soda -- sugar flavoured water), lollies (candies) and that sort of rubbish. blue.

Just about the whole world and their dog know that my skin burns and goes red in face, neck, upperchest, arms and lower legs and feet and mouth for days when I eat certain foods, meds etc. And it can sometimes happen when I've been very strict and careful. And it can be very hard to find clothing that doesn't feel like sandpaper on my skin to wear on those days. Before I found at that all these foods and additives and some meds etc were the culprit I spent weeks sitting in front of a fan with just a very old worn out soft sheet wrapped around me. I sleep with only very light covers on me at night. The warmer I get when I'm asleep the redder my skin will be when I wake up -- unless I wake with bad migraine. I am also treated for chronic migraine but I get breakthrough migraine sometimes that pain killers will not help. I think they are all connected. The first time I experienced the burning feeling was one night waking to feel that both my legs and feet had been placed way too close to an open fire. This lasted about an hour and no one could explain it to me. That was about 11 years ago, probably more. So glad I did not know then what was in store for me. The thing is I have a sister who has bad migraines (2 of us out of 5 sisters) also. And she has experienced cool water feeling running down her legs a couple of times. The first time she was teaching a class and thought she'd wet herself. Excused herself to go to the toilet and found herself to be completely dry. Her doctor and specialists she saw had no answer for her. She lives in Italy so I guess docs haven't a clue there either, sometimes. blue

Hi Looneymum, I know we all respond to meds differently but Lyrica caused no side effects for me but constipation. Colonic inertia is a problem for me so I could not continue on it. Lyrica, which was given to me for migraine, just as the neurontin was didn't seem to make any difference to me but I might not have been on it long enough to see a difference. I tried neurontin twice. First for migraine and then a year and half ago my neurologist gave it to me for my hot buring skin problem. It did nothing for that either. I'd love to know if it worked for anyone? blue

Thanks Alex, I've saved the links to read on a 'better day.' I just read a bit of the first link you posted and it sounds relevant to me so far. Deb

So glad to hear of your fantastic improvement. Yay! Have you any links about this diagnosis

Interesting, I was prescribed neurotin but it did nothing. Thank god it did not make me worse. Sorry it did this to your son, Looneymum blue

Yes this is a problem that started about 11 years ago and has steadily grown worse. Food wise I have to eat low salicylate, no amine, no glutamate and many grains are out for me too. Have to be careful really really careful with flavours )natural ones as well as artificial ones ). And I'm anaphylactic to aspirin, anaphylactoid reaction to something we don't know what.. Less dramatically allergic to other meds. Lots of meds cause 'adverse reactions' which are no party. You think I'd be really skinny but I'm fat. This is because I can eat high fat dairy foods and sugar. In fact, sugar and salt are the only flavour enhancers I can tolerate, it seems. And I use them liberally or my 'diet' would be so bland I'd have died of boredom by now. I can't eat out. I have to make everything I eat although occasionally I can go to a café and have some poached eggs on sourbread toast with butter and a weak coffee - that is now my only 'dining experience.' And that has gotten boring over the past 10 years too. My diet keeps my skin from being sore most of the time but not always. But it has caused me to have another health problem -- obesity because of high fat and sugar. Something that was not a problem until about a decade ago. I've managed to get my weight down a couple of times but I always end up putting it back on and then some. I used to eat so healthy and exercise like a crazy woman. I even thought about taking up smoking again as I know I would probably lose weight by smoking but the health consequences are dire from smoking. blue

I'm really klutzy and I blame it on brain fog. I'm especially bad at dropping pills. As I'm getting one out of the container I will be thinking to myself 'be careful -- don't want to drop it and have to look for it.' The other day I did just that with a 1mg tablet of Xanax. It was daytime and I spent half an hour looking for it. I knew it hadn't gone far. I went and got my glasses and put them on. I finally got a torch -- and the room was light anyway -- and shined it around spot after spot. Finally, to my relief I found the pill. It was in plain sight. I have a 9 month old grandchild who is just crawling and putting everything in her mouth - the smaller the more she likes it. Talk about my high anxiety levels. I've decided I'm probably going to have to make a habit of taking my meds in my bedroom only and on my bed as my flooring is really light coloured. And I've got to change the quilt on my bed. It's white and I just can't see white tablets on it. And nearly all my meds are white or as good as. So, new bright coloured quilt to show up any white pills should I drop them AND one spot only to take my pills and where granddaughter is not able to get to (Yet). The thing is if I hadn't found that pill I would have been convinced it was on the floor somewhere and crawling granddaughter would find it. I feel so responsiblea about this stuff. It's so exhausting. blue

I had my gallbladder out a couple of years before I was diagnosed with POTS. Although my gall bladder was 'full of stones' according to the surgeon who took it out, the episodes of pain continued for many years so it was not my gall bladder that was causing it. I wish I'd kept my gall bladder because I have slow digestion/constipation problems that dramatically and increasingly worsened after I had it removed. If I'd been diagnosed with POTS I would have known to think twice before I had my gallbladder out. After some years the attacks of pain settled and now I just get what I think of as 'echos' of the pain. Mild attacks that cause discomfort but don't have me writhing on the floor while lying on my side for about an hour that I used to experience. blue

Hey Margiebee, I'd hug you if I could. E.Soskis, you are so right about guilt. Jackie, I'll read a post about your heart monitor. Hey All, I thank the gods for this forum == I get more understanding here than I do anywhere. Mostly my illness is ignored - except by one dear, dear sister who tries so hard to understand. I've been spending a lot of time lately sitting. And thinking. And I thought what have I wanted most from life for a long time. What have I wanted but thought I couldn't have because hey, I'm already a burden to my husband because he is the sole breadwinner and I've been apologising for this for so long (I've also realized that I"ve grown very angry about having to be so apologetic. Which is stupid. I don't have to be angry because I don't have to be apologetic. It's like apologising for getting cancer or something). And I decided I need a dog for company - I've actually known this for a long time. I miss having a pet friend. And a car to get around in. I've wanted these things for a long time but didn't feel I deserved them so was not able to push for them while at the same time feeling very angry because I felt like I was letting my needs go unvalidated. I've let hubby control me through our finances and his personality and he doesn't want me to have either a car of my own or a dog. I think he's always been a controlling sort of person but when I was the person that I used to be I was up for the challenge of dealing with this. If I believed I deserved something then I believed it and he had to believe it too. But then, as I got sicker I felt like I was 'undeserving' and a 'burden' on him so I tried to take up as little space as possible and felt guilty for taking up space when I couldn't help it but I was also feeling angry that I was doing this to myself. I've ended up letting the last decade pass feeling guilty but also feeling really angry. I've expected people to treat me well but have not set the example by treating myself well and by believing I deserved some things. So, I am going to get myself a dog for sure and I'm getting a little second hand car that I can get around in and get back some of my independence. A few years ago when my daughter was overseas I borrowed her car while she was away and I felt so much happier. It really was a means to get some places that I love to go but am unable because I can't manage public transport because of all the waiting and standing and walking it involves. blue

I have a cleaner that comes in every fortnight to do the bathroom, kitchen, vacuuming and dusting. I can't do any of those jobs anymore. Laundry and tidying and dishwasher stuff I can do slowly through the day. Most food shopping is done over the net. It's food preparation and cooking that makes OI and migraine worse. I've tried different things but I just can't stand up to work at the benches, cutting veges etc, stirring on the stove, bending to oven. I've tried a stool but even with my feet not dangling down --- propped on the rungs -- I still feel bad and make myself worse. I'll also get brain fog too -- recipe for breaking plates, burning myself on stove, cutting a finger when chopping. I'm a danger to myself in the kitchen. Although I take the chance 5 nights a week to get hubby's dinner made. My diet -- vitamin wise -- is suffering because I can;'t eat the foods he likes to eat and he doesn't like the food I can eat. I could not cook two different meals a night for anything. It's beyond me. So I cook his dinner on work nights and just make a very unhealthy and quick snack for myself and take a couple of vitamin tablets. Then I'll snack on during the evening. Sometimes I think those vitamin tablets are the only thing between me an malnutrition. despite being fat. blue

That sounds a lot like me. I was always fit and worked out a lot. plus day to day stuff, incidental exercise was huge. eg I'd walk to most places I had to go to. Often hours long walks and big hikes too. Then pots hit hard. I took up swimming at advice of doctor. Up until 2 summers ago though I was able to keep fit swimming -- 2 kms a day. But we moved away from the beach and getting there and back is now impossible. We are moving back to the beach for next summer (I'm in Australia) as I have to do exercise and swimming is the most pleasant, the most easy. I'm pretty deconditioned. Not really bad but compared to when I was swimming my condition is not good at all. I realize that not being able to go swimming is a possible reason for the ongoing severe depression I have. I was talking to one of my sons last night, the older one and it's rare that we get a chance to catch up and we were talking about his, his brother's and my love of the ocean. They both surf. He said that swimming keeps him calm, less anxious etc. I told him that going swimming in the ocean (it's all in the salt water for me) was like rubbing medicine all over my body that made me feel good for at least a few hours afterwards. And he said, "exactly. mum.' blue

Skosis, spinner.I did not sweat for 6 years. I was 4 years into 'no sweating' when I was diagnosed. I continued to have the problem for a further 2 years and then suddenly I started to sweat -- so slightly it was just noticeable to me. Sweating ability grew stronger from then on in and now 6 years??? (I forget exactly how long) on, I can and do sweat profusely, so my body can cool itself. I sweat to the point of my clothes wringing wet. It's like the pendulum swung from one side to the other. And I can sweat profusely on a winters day. But more likely in summer. As annoying as profuse sweating is, it is so much better than not being able to sweat at all. I hope you guys get ability the ability to sweat back. Trying to keep my body from overheating in summer used to be so hard. And took so much fore-thought, eg. where was I going, what time, what is the weather report, etc. On days at home I used to be in and out of the shower to cool myself down. Sorry to hear you had such a bad day E.Skosis. blue

Heats a definite problem but it's winter now in Australia and I'm not feeling much better. I think it's got to the point that I need to stop thinking in terms of 'flares' -- I seem to feel like death warmed up (overly warmed at that) most of the time. Now I am re-examining my last 15 years it seems that 15 years ago I was having flares and that 10 years ago it pretty much became a full time thing but with varying responses -- some days I do better, some days I do worse and mostly I can't see a reason for it. I can trigger breakthrough migraine though, for sure. But mostly migraine just happens. I can't explain the really painful ones that last days. I just don't think there is a trigger other than POTS being the trigger. Perhaps for some of us 'flares' is not the right word. Just thinking. blue