blueskies

Thanks everyone for your replies. I can relate to all of them. blue

KayJay, I've rebelled often and eaten foods that I know will cause me problems. I always regret doing it but still, occasionally I want to feel as 'normal' as possible. And sometimes that means eating the same food as those I'm eating with. Although, the last time I ate some food that I pay for later I paid for it so badly I think it's just cured me of the 'rebelling.' At least for now. I actually didn't eat anything at my daughter's wedding. Hopefully no one noticed. Actually, i was at the point I didn't care whether anyone noticed or not. I was just managing to hang in there, and just BE THERE, at the ceremony and reception. That no one in my immediate circle (except on pots/dys forums) understands the extent to which my life is limited most of the time is a drag, that's for sure.

Very well put, frugalmama. I like your take on this and am going to give it much more thought.

Hi Charmed Liz, Sorry to hear you had such a bad experience on Thursday. And yes, you make a great point about how the medical people had a chance to learn from you but chose not to listen. I"ve had that happen to me too. Once, when in emergency, I was actually told that what is happening to me was not possible, while it was happening in front of their eyes??? An hour or two later a specialist who had attended me just after I was told this could be heard telling off the person that spoke to me like that. Some doctors and nurses can just seem to be sore losers when they get it wrong. A weird atttitude to have if you are in the medical profession. I see a psychiatrist to help me deal with depression and the struggle of having pots. When I was going through another period of questioning whether I really had pots I rang my pscyhiatrist and asked him could I have a somatoform disorder instead? (Hypochrondria is one sort, there are a number of others). He told me that he really thought not but to give him a few days to review his files on me. He rang me back and said that what I had was not 'in my head' but very much physical. And still I question it all at times? BTW, phenergen sets off tachycardia for me. Not at first, for an hour after I take it I'll feel quite calm and relaxed and then I have the opposite reaction -- lots of rapid heart beat and agitation.

Thanks people for your responses. And I think acceptance is a better word than denial, too. I find it hard to accept that I have pots. And it just all seems so far fetched to even me at times and I have it and suffer from it! I don't use the word surreal often but on a good day, even with the symptoms that are always present (some symptoms come and go as you'd know), I feel like this can't be happening. That my body looks so normal (except for the pots flush which comes and goes through the day I don't look sick at all. As a matter of fact when I'm close to collapsing I am a healthy ruddy colour!. No wonder family and friends don't understand .Although I do wish they would try harder to understand -- rather than ignore --that I'm sick as best they can. I wish that they would understand that when I say I can't do something, it's because I really can't do it, not because I don't want to or am just not pushing myself enough. I"ve pushed myself into a bedbound state too many times because of this attitude and being tough on myself. I think part of me feels like why this? I have dysthymia (low grade but constant depression) which I have had since I was a kid (I'm 56 years old now) and it just seems so freaking unfair that I've had to battle feeling low and get pots on top of it. BTW, just for anyone's information having dysthymia doesn't mean I don't have a great sense of humour at times, I really do. And I really appreciate the absurd, too. And can enjoy things in life. It's just this feeling underneath all other feelings that has been with me as long as I can remember. It has nothing to do with POTS. But it can make for a sad me when other people aren't around. blue.

More like a sense of 'it's not real.' I do go into denial, sort of, at times. I still find myself thinking, 'but I couldn't have pots'. which is ridiculous because the symptoms are so persistent. Yet, I find myself thinking this way although I can no longer work, getting around is so difficult, I have so many symptoms, housework is hard, standing long enough in the kitchen to get dinner is almost impossible (somedays it is impossible), always feeling exhausted, bad constipation, excessive sweating, the list goes on. And more. Stuff you'd all experience. And yet, a lot of the time I'm not really believing I have this thing? Am I nuts? Does anyone else do this? many thanks, blue

Thanks nowhat and puppylove, I'm also post menopausal - officially postmenopausal at age 51. I do think that hot flushes have something to do with it but like pupply love I'm also thinking it also has to do with presyncope. I get the tachy, lightheadedness/'bursting' head, and feelings like i'm going to faint. I can actually feel like this and continue to stay on my feet for some time but I do feel dreadful when it's happening. Other times I sit down and put my feet up or lie down. Doing this will often bring my sweating, tachy under control. Then again, it happens in bed. I guess it's probably a combination of having pots and being post menopausal. Apparently, according to Dr Grubb (one of his patients told me), menopause will often see an increase in POTS symptoms.

Hi All, I went for nearly 6 years without sweating at all. 4 years after this symptom developed I was diagnosed with POTS. Anyway, after 6 years of virtually no sweating I started to sweat again. Just a little, and it would occur when I was exerting myself (like when cleaning kitchen). The ability to sweat continued to increase over the next few years but now I've gone way past normal -- to the other side -- to excessive sweating for more than a year and a half. The plus side is that I don't have to be concerned about overheating anymore. The negative side is that I'm almost always sweaty -- changing my clothes multiple times a day, having a number of showers etc. It's cold now in Australia and I had thought that with the end of summer I'd see the end of excessive sweating but seems that this is just not going to happen. I'm not feeling too good anyway so I'm not leaving the house much at the moment, but when I do it is impossible to dress for the cold properly as in 5 minutes or a half hour I'll be wanting to strip most of my clothes off because of feeling hot and sweating. And when I sweat I sweat everywhere, it even pours off my legs a lot of the time. And sweating on my face can feel like it's raining at times. I kid you not. I'm just wondering who else gets excessive sweating? And if anyone else has experienced going from not sweating to sweating too much over the years? Talk about a complete turn around. Many thanks, blue

I asked this same question a few years ago on another forum but no one had experienced this. Despite taking very good care of my teeth and gums and seeing a dentist very regularly, I've been fighting bleeding gums for many years. Despite cleaning, flossing and very regular dental visits a few years ago my gums started to receed and are continuing to do so at an alarming rate. When they started to receed I saw a periodontist a few times. He recommended using those little dental brushes for between teeth. I used them for a few years but they have not slowed down the gum recession (and have connected them recently with a neuralgia like pain on the right side of my head. I've stopped using those ltitle brushes and that particluar head pain has not recurred). I'm 56 and have spent a fortune on my teeth trying to keep as many of them as I can. I get decay too. And, I'm a mouth breather. I'm actually becoming resigned to the fact that I will be having false teeth in the foreseeable future. The thought of this upsets me at times as I just hate the thought of false teeth. But I tend to castigate myself for getting upset about this as I'm 56 now, and should be way past the vanity stage. All four of my grandparents had false teeth and 3 of them lived well into their 90s and only one complained about having to live with false teeth. I think the others were just grateful to have them. Way back when I saw an article about EDS and dental problems but I don't have any other symptoms of EDS and it's never been suggested I have it.

Thanks all, it's reassuring to hear that some of you have the same problem. It drives me nuts. I was a little amused last night to find that after I'd posted about this problem in the forum I had absolutely NO tachy. But I can have the occasional night when this does not happen. Post menopause it's so hard to sleep soundly. I wake every couple of hours. Drives me nuts. And hubby wakes me as well to complain about how I'm disturbing him. (not sure how I'm doing this in my sleep but it makes me want to to throw him or myself out of the house). I do the carb thing, have a good knowledge of what contains caffeine -- JenJen's doctor's opinion makes a lot of sense. I get much more 'jerking' when I go from almost asleep to being jerked awake as i get older but had become used to it. But the tachy stuff makes it a bit harder to settle.

Hi, 7 years ago I would have been writing that I was very skinny and had no answer to why. Now I'm quite overweight and can't tell you why either. I follow the same diet now as I did then. One for people who have intolerances to certain chemicals in foods, natural or highly processed.

Thanks Julie, I liked the way you put it.

I basically either hire cleaners to clean my house when I can't. But they have to use the cleaning fluids, cloths I provide. That way I don't get migraine from their strong smelling cleaning fluids. when I feel good enough I go through periods of cleaning house myself. It takes me about a fortnight to get through my apartment -- I aim to clean something every couple of days. One day I might do half my bathroom and two days later I'll finish that job, for example. It's actually not too hard to keep clean. Messy is another matter. My place is very messy. Even if I was inclined to keep it tidy looking my husband's messy habits would defeat me. I live in disorganized cleanliness. Just before my little grandsons come to visit I will go around and put everything dangerous out of reach. Which is good for them. Not so good for me because I often can't remember where I put stuff and will be missing things for ages, only for them to be found when I'm looking for something else, usually. blue

Hi, For at least a year now I've been experiencing a strange phenomenon. Just as I've settled down to sleep (ie, gotten into bed, adjusted pillows etc., and settled down, or been lying in bed reading and put away book and turn the light off and settle down) I will suddenly get a surge of tachy and get very hot and have to throw any covers off me for a while. This usually only last a couple of minutes (although it has lasted longer than that) then it passes. I have this happen to me most nights, but not all. I can't relate it to anxiety about anything. It's not an anxious feeling but it's certainly a 'alert' one. It can be so annoying. Often I'll get to the point of dropping off to sleep and then find myself wide awake again with this tachy and overheated feeling. I'm not frightened by it but I do find it unsettling and exhausting as often I will have to get up and go and watch some tv, or read a book or something before I try to go to bed and fall asleep again after yet another 'final' trip to the toilet to pee. Those are the nights the phenomenon has lasted longer. The nights when it's only lasted a couple of moments I'm usually able to go to sleep soon after. This has happened in both winter and summer so I can't relate it to having to many covers on and being overheated because of it. Any one else experience this? Many thanks, blue

--------------------------------------------------- I don't know what type of POTS I have, either lotusflower. Sometimes I seem to fit one category better and at other times it's the other??? Your reaction to heat does sounds much like mine. 16 degress c outside sounds just right for me I don't have airconditioning at home (but I'm looking to move to somewhere that has it before our next summer) and this summer in Australia (being the coldest in about 50 years has still been way too hot for me) has almost finished me. In summer, when I go out, I'm trying to look presentable in the minimum of clothes decent for a 56 year old woman. In winter I'm often out and about t-shirt and jeans while everyone else is well rugged up. I was wondering what mast stabliser medications you take? .

I can't tolerate anti-depressants. They really do a number on me.Both the ssri or snri ones . I've long long been telling docs that I don't need anymore serotonin in my system. (I've done the excess serotonin tests a couple of times and my levels are fine). I believe that I need the reuptake of serotonin like I do a hole in the head. I take low dose opiates for chronic daily migraine but for two periods in the last 5 years -- my migraines have been bad for longer than that -- I have taken periactin (cyprohetadine) for migraine prevention successfully. I"ve tried to use it a number of times but it's only worked twice, the first time for 3 months, the second time for longer, but then, each time, it stopped working and I had to switch back to other pain relief. I just tried it a short while back and it didn't work for migraine prevention so back on the opiates again. Sometimes periactin is given to teenagers for migraine relief. It never did work as a reliever for me but did help with prevention and I will try it again in 6 months or so to see if it's going to work again. For migraine preventative purposes I needed to take it on a daily basis. My point (sorry, sometimes it takes ages to get to my point) is that cryproheptadine is a serotonin antagonist. I believe that although I do not have too much serotonin in my system (according to the tests) I'm highly sensitive to addition of more. But strange that the amount that I do have seems that it might play some part in my chronic daily migraine problem. As the agonist -- when it works -- has that one effect of stopping those migraines (and as a bonus I don't have the otherwise ever present hives here and there on my face and body I have just learned to deal with by ignoring them (when they get worse it's a whole other story). It's a pity I can't take anti-d's because I do get depressed and could do with an anti-d that doesn't effect me negatively.

Meditation definately helps with my stress levels which does help with my attitude to having this chronic illness. When I don't meditate I don't feel as mentally well. But my body is going to do the tachycardia/fainting stuff whether I meditate regularly or not. Meditation does not help either with any of my other symptoms. It does help with me being able to detach myself a bit from what is happening to me -- sometimes. I can meditate during the day, have to do it lying down with a pillow under my head (position dictated by pots). I will be very relaxed etc but as I get up from lying positon heart rate will usually shoot up it's 30 points or more. No matter how slowly I get up.

Thanks from me too for bumping this. Jeff explained dys very well even though we have a range of symptoms as we know. No one's are all alike. I just wish I was able to have Jeff's faith in a god. I'm an atheist. I often envy those with a belief in a higher being but I can't believe. The reason for envy: I think it must make it just a little bit easier to believe someone/something is looking out for you and that being able to trust in this takes away some of the stess. But I just can't make myself believe.

I had back surgery last year -- a laminectomy. Just a hint for the mri that helped me and may help you. The technician put a pillow under my knees which somehow relieved the pressure on my back and I was able to manage the MRI quite well.

Thanks for this. I thought asronauts fainted because of rapid deconditioning while in space. That and then having to deal with gravity when they first become active.

I used to love summer -- many years ago. Now I hate it. I do so badly in summer. Heat is bad and I have increased symptoms. I was not sweating for 6 years and I must say I used to like the humidity then, but now I've swung the other way and sweat way too much I can't handle humidity very well. My body runs hot just about all the time. I much prefer winter. Although, where I live in Australia our winters are hardly harsh. I sometimes have trouble with the cold -- will suddenly get too cold and feet will hurt from cold no matter how the blankets I wrap around them but this happens only on occasions. Whereas in the summer I am too hot and too sweaty nearly all the time. In winter when when in bed my husband is covered by a 5 blanket thick feather 'doona' (comforter? -- not sure what you guys call them)but I get by with a very, very lightweight blanket

Missionary position for me only now and very gentle and slow. And not as frequently. It depends on what my pots is doing. Heck, everything has to work around pots, doesn't it.. But I do have satisfactory sex. I'm post menopausal too, and I'm one of those lucky women who continue to have a sex drive. (Or I consider myself lucky, I know some women are finished with sex after menopause and I can understand that) I did lose my sex drive for a while but it came back. Much in the same way I lost my ability to sweat for 6 years but it came back (and then some, unfortunately, as I now sweat too much, too easily). I still have orgasms but not the great big ones that happened when I was younger but these really much gentler ones that can go for much longer. And they feel very good. Me being chronically ill has changed my relationship with my husband for the worse, unfortunately. I get impatient with myself and pain can make me snappy. Hubby still wants to have a wife that can be very active during sex (can't do that). that can work outside the home (can't do that), cook dinner every night (can't always do that) and be ready to go out when he wants to (can't always do that), but when I'm having a good day on the weekend he will just want to sit in front of tv all day and I would happy to get out of the house with him and go see a movie or something. We are finding it increasingly hard to connect and to be in sync. His work problems (he has a very physical job at an age when he really needs to be retiring), causes him to be very resentful. So, problems with my relationship with my husband has also had an impact on our sexlife. And a lot of those problems have been the result of me having pots.

I, too, think everyone is different. That what works for some does not work for others. Heck, what works for me one minute may not work for me the next.

Thanks Jangle, I'll try the epley manoveur for sure. I was astounded when I got to this part of the article: ------------------------------------------------------------------- " 3. For at least one week, avoid provoking head positions that might bring BPPV on again. Use two pillows when you sleep. Avoid sleeping on the "bad" side. Don't turn your head far up or far down. Be careful to avoid head-extended position, in which you are lying on your back, especially with your head turned towards the affected side. This means be cautious at the beauty parlor, dentist's office, and while undergoing minor surgery." ----------------------------------------------------------------------- I live like this. No one told me to do it. It's just my body's instinctive adaption to this problem. But seeing this in the article got me thinking. Interestingly, (interesting for me, anyway) when my migraine/pain specialist had me doing feldenkrais with a practioner he recommended -- she'd have me lie on my side. I insisted that I needed a pillow which was fine by her. And she'd make the most gentle adjustments to my body. So gentle and minute you could hardly feel the difference but everything sort of 'felt right.' All very lovely until she got to my kneck. Just moving it up, extending my chin up -- as gentle as she did it -- made me instantly sick. I'd want to throw up straight away and I'd tell her to stop. She'd stop. My pain specialist said it was because of the damage done to my kneck when I was 20 -- I'm in my 50s now - but after reading this I think maybe that although there is damage to my kneck it was more to do with balance/dizziness. I don't know, It's hard to separate the kneck -- migraine - dizziness problem. I should imagine that with vertigo going to the toilet for a man is a real challenge. I thought I had it bad. I usually crawl from the bed or couch to the toilet and then faced with having to try and partially stand up so I can sit on the toilet I'm always thinking, "why do they make these frigging things so high." Okay, I'm getting potsy. I have just spelt 'neck' as 'kneck' numerous times here. Time to get off computer and semi-recline on lounge. blue

Like Jangle, I'm one of those pots people that exercise does help. Most of the time. I try to keep it up because, on balance, it makes me feel better. There are periods when it causes me to have that old battle with gravity and I'll not be able to exercise for a month or so but I wouldn't be starting over on my walking program repeatedly if it didn't help me more than hurt me.