blueskies

My husband said to me the other day, "you never get out of that chair and you never exercise." Not true. But I do spend a lot of time in this chair with my feet elevated and I do exercise although not as much at the moment as I was. But the problem is he didn't say, "Is your pots stuff worse?" Which is, I feel, the obvious question. My grown up daughter who has a baby of her own called me 'Crazy.' just yesterday. That was after I walked to her place and back to mind her child while she went to the supermarket. Instead of getting all defensive when she called me crazy I just said 'we are all crazy, just in different ways.' In no way was this an apology to her, just a reminder to her that everything thinks everyone else is just a little bit crazy in some way. I've spent 10 years feeling guilty for having this illness but apparently I shouldn't have bothered because in the eyes of my family I've become lazy and crazy. How is it that for the first 47 years of my life I was just fine but suddenly, completely out of character, I've become lazy and crazy? blue

My main doc is my pots doc. He's a vascular consultant/diagnostician. I was sent to him by my allergist/pulminologist nearly 8 years ago and he was the one that diagnosed me with this illness with the awfully long name of Postural Orthostatic Tachycardia Syndrome. When I see my other specialists they all send him a copy of the report they send to my gp. blue

I've nothing to add to loss of vision but just wanted to note that I read somewhere that people who get migraines should wear sunglass that are polarized. Actually, I think I saw this on the show, 'the doctors.' I'm definitely going to go and buy a pair of polarized sunglasses. I had a pair for a while and they were better for me. Unfortunately I lost them -- They were so light on my head that I forgot I was wearing them and dived into Sydney harbour with them on. They slipped off my head and were gone for good -- sank straight to the bottom. Grrr. blue blue

HI maia, That struck me too. And that's only in the U.S? I'm in Australia and by that percentage I should at least know one other person with pots/dys blue

Your mums not weird Ashley I can get the electrical buzzes too. And although my migraine changes form over time -- I long for the days when a migraine was 'classical' started with zig zag lights pattern that moved across my vision for about 20 minutes, then no pain at all for about 20 minutes, then 3 hours of violent migraine with vomiting then blissful peace I no longer get that type. Mine have gone on so long and have morphed and can last 3 days (they used to last 5 days but medication has helped somewhat). Some years ago, I went through a stage when in the throes of a very severe migraine I could 'hear' a high pitched ringing tone. Actually, I could 'feel it.' I remember going to the migraine clinic at the time and mentioned this to the panel of three specialists. Two pain specialists, one a psychiatrist. I thought that they were going to think I was nuts when I said I could 'feel' that sound. They said, no, that this happens to some people. Our senses and things all get muddled up. blue

When I woke up yesterday I got up and took my bp and pulse (i'm tracking them as I may need bp medication and need readings to give to my doc). When I woke up my bp was 128/82 and pulse was 94 (it's usually just over 100 - 110 but I was delayed in taking the readings as I was waiting for a delivery). Later in the morning I got quite potsy -- dizzy, brain fog, the anxiety that I've been experiencing almost continuously lately got worse, sweating, flushing, a break ththrough migraine at a moderate pain level -- I had to take a breakthrough pain killer med, just generally feeling unwell. I tried to do some stuff in the kitchen and this made it worse. Took my bp and it was 153/98 and pulse rate was 93 (usually my pulse rate during day on a good day is under 80. Resting pulse rate is usually 72 but has been higher lately. I think this reflects the anxious state I'm in most of the time lately). Later on, feeling a bit better, I walked to my daughters place (about 20 minutes at a slow walk)to mind my granddaughter while daughter went to supermarket. I still had some pots stuff going on -- it's rare that I don't have some symptoms but I'm at a functioning level when like this. my dizziness was minimal, migraine barely there and coming and going, just felt very tired, mostly. Walked home very slowly and further I walked the slower I got as I had started to feel very potsy again. Migraine returned to a mild level, I was dizzy, flushing, finding it hard to stay upright. My feet felt like they were made of cement and I could barely lift them -- was doing what I call my pots march which means I was trying to lift my feet from my knees sort of as I walked. Lots of brain fog and became extremely exhausted. I had to climb the four steps to my front door and could barely get there. Moving like the 80 year old I feel like. (I'm also used to climbing stairs as I have a flight of 16 stairs in my house which I climb many many times a day. I took my bp and it was 157/92 and pulse rate was 109. At the rate I'd walked a 'normal' person would not have a raised heartrate at all, or only very slight. At least mine wouldn't have been so high in the 'good old days.' Had a rest and cooked hubby and myself a very very quick easy meal. My bp never did go back down to anything normal until I woke this morning. I felt wired but tired all night. finally went to bed about 11pm and woke every hour or hour and half. I'm exhausted. Sleeping for more than an hour and half before waking is becoming extremely rare. hence I'm always tired. At 6 am I fell asleep and woke a full 2 hours later. Feeling a bit better but had to medicate for mild/moderate breakthrough migraine that is not going away completely. I had the migraine most of the night but have learned not to medicate for night time migraines as medication will not work for some reason. Doctors have no answer for that. This morning was 124/86 and pulse rate was 94 but this was about an hour after I got up from bed so not a 'true' normal reading. My pr would have normally been higher. It's noon here now in Australia and migraine has migrated to both sides of my head but is still mild/moderate level. Not severe. Medication did not help. I'm also feeling too hot (it's winter in Australia) and brain fog is strong, I'm being very forgetful and constipation is worse today. I've been resting for past couple of hours in armchair with feet elevated. My bp is now 146/95 and pulse rate is 82. I'd expect an elevated bp with a migraine but taking a painkiller should mean that bp goes down. So maybe reading is lower than it would have been had I not taken the painkiller???? A regular sort of day for me, lately. blue

I've never been really bedridden for more than a day or so at a time. I am couch ridden a lot though. I spend a lot of time sitting up on couch with feet elevated but mostly I can get my own drinks etc. We moved 9 months ago to temporary accommodation and during the day I have to go upstairs to pee -- a lot -- as the toilet is upstairs. I am managing stairs so much better now because I've had to. What with having to go up there to use the toilet, shower, do the laundry, tidy up, get dressed and go up and down tidying etc. I think I'm going up that flight of stairs nearly 30 times a day. There are 16 steps in a flight. It's made a difference to the muscles in my legs -- much more pronounced. So, for me, very short sharp burst of exercise interspersed with resting seems to be good for me. Although I will be glad when we move out because I have been knocking on wood about those stairs. I don't like that I could possibly become suddenly unable to tolerate them. The lease here ends in 9 weeks so any time spent living here after that I will feel more relaxed about this as we only have to then give 3 weeks notice to leave. Until our lease is up I'd have to pay the remaining time on the lease -- that would be a lot of money. BTW, when we moved here I stored our dining room table and chairs because I haven't used them for years. I can't sit up straight with feet down and eat. blue

I often get this cracking feeling and sound that I can hear when I have a migraine. It's most often in my face around my eye and nose and the area between my upper lip and nose. It feels like the inside of my head is too big for my skull -- it's not always associated with migraine. It doesn't hurt but it's disconcerting. Anyone else get anything like this. It's a new symptom for me. A year old, probably less since it started happening. blue

Hi Ageeky, Jerky legs, yep. -- comes and goes. Sometimes associated with a medication I might be trying. Sometimes not. Tingling face, Yep -- mostly associated with migraine but not always Hand feet go numb easily. -- yep, my feet do go numb very easily -- that's a common problem for me. Not so much my hands -- it happens but not as often as my feet. I can go months without feeling numb hands. I do however get a couple of numb fingers sometimes which are associated with migraine. No raw patch on tongue swaying -- feels like I'm on a boat Ground shaking beneath me -- no, but I have had the sensation that the ground beneath is falling away (have had that since I was 16 and am now in my 50s) Glad you mentioned it because I realized I haven't felt that symptom in quite some time. When I feel the ground falling away my body jerks in response like I'm trying to hold onto something. It only lasts a split second but is very disconcerting. Glad I haven't had it in a while No weird sizzling sound No lumps at bottom of my rib cage I wouldn't scrunch my face as it could trigger a migraine, maybe. Low normal iron levels last time I was tested. But have confirmed my iron levels can change from one blood test to another and they were only a month apart. No one had an answer for me. I've got my own weird symptom I'm going to start a topic on and see if anyone gets it. Sometimes I can hear a cracking sound in my head, mostly my face. It's as if my brain has gotten too big for my skull. It's associated with migraine most of the time, but not always. Although the times it's not associated with migraine I could be having a 'silent' migraine. blue

Brain fog became a problem for me about 10 years ago. Up until 5 years ago I was teaching over the internet and could write a decent letter, email, post etc. I used to write to a pen friend -- constructing these really long and interesting letters -- we use to swap ideas about the different societies we lived in. I was still 'sharp" enough. Now I find it hard just to write a post that makes sense if I have more than one thought I want to express. I've just started tying to write 'opinion' pieces -- to myself. Imagining I'm writing for a paper on a political or feminist issue. It's my form of soduku or crosswords. Forcing my self to think. Not having much success yet but hopefully, if I persist I will get my ability back to write coherent pieces. Enough, hopefully, that I'll be able to write long letters again. I equate it to exercising my body for strength to cope with standing/walking problems - which works, to a point. blue

hi margiebee, I have found the opposite. I have to drink when I eat. Otherwise the food seems to get stuck in my throat sometimes. BLUE

They also hate the smell of cyrsanthemum (sp)? flowers/bushes. I was watching this building show on imaginative home owner builders. They used a lot of eco friendly stuff and liked having lots of water/ponds around the house == essentially rain water ran off the roof into these ponds. They were already living in a mosquito dense area. This owner had some sort of thing that squirted the smell of those flowers off the eaves around the house directed at the water areas and it acted to deter the mosquitoes from the yard and the house. blue

Everything changes you somehow. POTS is not exempt from this. However, basically you are the same person now that you were before pots. When we are born we are already who we are meant to be. We live, love, suffer, accept, have friends, like some things and not others. We may be intrinsically funny or gentle or whatever. There is so much that is inherent in us. Yes, there is the stuff we learn on the way but what we do with it depends on the person we were born to be. Or that's how I see it. I have terrible depression at times. But I also have a great sense of humour. Lately my sense of humour hasn't been very evident. But it's there and erupts at times. Thank the gods for that. I'm once again trying very hard to accept that I have POTS. A radical acceptance. But that doesn't mean I'm going to just BE pots. It's just a part of me. And a part of me I try my best to manage and make better on a day to day basis. I feel if I can remember to just radically accept the fact that I have this illness and stop fighting it and second guessing myself I will be able to use the energy I waste mentally fighting and second guessing myself and just deal with it. Just my thought for the moment. Mental stasis is as hard to find as physical stasis at times. I need to remember to focus on the important stuff and not sweat the minutae. blue

I had a big one removed when I was thirty -- they used to strip them in those days and mine was stripped from my ankle to my groin and I have small scars on my calf where the varicose vein formed a big lump that was gone after the operation too. And I had nearly 20 years free of pain caused by varicose veins. I'm now in my 50s and another has taken it's place -- although not as bad and not as painful BUT it does get itchy?? When I went to see my pots doc about some stuff about a couple of years ago, I also asked him if I could have the small veins that are between my calf and ankle injected -- not sure what they inject them with, I thought it was only saline solution but not sure now, and it does make those tiny spider veins disappear. He replied that yes, I probably could, and he would recommend someone to do it. (My sister in law had that done and her legs look so much better for it). My pots doc is a vascular specialist and a well known diagnostician. He ordered a Doppler on my legs as well as tested for other stuff. We talked about some of the other issues I was there for. On the follow up visit, when I asked him if I could have the injections for the small veins he said no, he would not recommend it. We got hung up on another issue and I never got around to asking him why? I kept forgetting on subsequent visits to ask him why he did not think such a relatively minor procedure was out of the question but next time I see him that question is at the top of my list. blue

lynne, I'm in Australia so not sure how it works in the U.S. But I think I would be able to accuse them of age discrimination. Here that works for private companies as well as public ones. Also, I'd think your need to see pots specialists is a 'human rights issue.' blue

The new one. Or the one that I thought had gotten better but then reappears.<br /><br />blue

When I wake up with a migraine I can remember the dream I had before -- it's always a nightmare of some kind. I have more bad dreams (dreams of frustration -- big surprise -- not) than good dreams. When I wake up after a good dream I feel so good mentally. Physically, I often feel better after a good dream. there seems to be a connection. blue

I agree with all the replies. Find a doctor who is open to Pots. Honestly, what drives me nuts are docs who say, 'this can't be happening.' Really? And since when did doctors know everything? Medicine does not have all the answers but there are some docs that just seem to have forgotten this. I know it's exhausting but I've perservered over the years and now have a team of specialists (for my worst symptoms) that all work for the same hospital or clinic attached to that hospital and I'm getting as good care as it can seem I can expect. I have also found a very good gp who deals with a lot of people with chronic illness -- I struck out with a few gps before I found him. I did fire a gi doc once. He was just so dismissive. Happy to take my 300 dollars each of the three times I saw him. Told me to ring him if the last thing he told me to try did not work -- it didn't so I rang him. He did not get back to me. I spoke and left messages with his secretary 3 times over a three week period. Eventually I left a last message. I told his secretary to write down on his message pad that he was fired! I got a laugh out of it. Although I would like my 900 dollars back, to this day, still. blue.

I don't know if my bp is high or normal (it used to be low but that has changed) after a day time nap but I do know that sleeping during the daytime makes me feel like death on waking up - a lot of the time. I can't work out why day should be different than night. I guess there could be a number of reasons. blue

The problem with leaving a headache untreated is we can become more sensitised, our pain to the pain, our pain threshold can become lower and our headaches can get worse -- is what I've been told. blue

A doctor, unable to find a cause for an illness may well say 'it's all in your head.' This assumption of your illness being 'all in your head,' relies completely on the idea that medicine knows all -- has all the answers -- yet that very same doctor when asked if this is true will say no! Medicine is nowhere near having all the answers and everyone knows this. 'all in your head' is not an acceptable diagnosis is my opinion. I'm feeling stronger today and more clear headed. I just hate it when I swing back to second guessing. blue

i'm not sure what came first panic or pots symptoms. it's a chicken and egg question for me and unanswerable. I suspect pots came before anxiety but I don't know for sure. It's so hard to separate the two. I think panic and consequently fear of going out -- the agoraphobia -- are a result of pots symptom. Just my opinion. Were you diagnosed with anxiety/agoraphobia before you were diagnosed with pots? Medication, meditation, graded exposure (on goodish pots days) are things to be tried. You need to persist. I have days when I'm really pots-sick and don't attempt to go out and other days when I'm okay enough to go. But really, for me, the feeling like I'm going fall down, pass out, sweating etc are pots stuff and the anxiety is a result of feeling bad. blue.

Some of my symptoms got worse going through menopause. Which makes sense. (A person I used to talk to on a now defunct forum told me that Dr Grubb had told her to expect that symptoms might return for her during menopause -- she was doing well by that time. He was just warning her I guess). The thing is menopause is pretty much over with me and I don't feel any better -- most of the symptoms have stayed worse. it's like my menopause gave pots a boost. blue

Julie, I feel like that too at times -- how could I have such a weird thing as pots? Do I have it? Are the docs wrong? Joanne, I've been told I'm too nice too. LOL. That I need to speak up to my docs. My pulminologist/allergist told me this. I do speak up now but I'm so muddled by pots after 10 years of dealing it I'm not sure I'm making a whole lot of sense. Except when I'm seeing my psychiatrist with whom I feel calm (mostly) and can speak rationally about this stuff. Lemons2lemonade, Yeah, anxiety caused by pots causes greater anxiety for me. It feels like I'm always worrying about what is happening and also the 'what ifs.' I think the 10 years since I've been diagnosed has left me feeling very depressed as well. blue

I never lie flat either unless I find I've somehow managed to get into that position sometime during the night. I know that lying on the couch with my back against the back of the lounge and my head propped up by many pillows is the best way for me to sleep. I have weeks long periods when I don't go to bed but sleep on the lounge instead, sometimes. I just do better when I get up. But I sure miss my comfortable bed during these times. but maybe that's a good thing as I often fear my bed could become my whole world. blue