blueskies

Oh, just lost what I'd written before I could finish and post it. Thank you, Chaos. The link was great. I've spent some time on the net trying to find articles like this one. I need all the encouragement I can get. I appreciate it. AllaboutPeace, I loved your post about your visit to the doctors. Coincidently, I had a sort of similar experience 2 days ago when my sister came to see me and take me to a docs appointment across town. Afterwards, we were sitting and talking at my place and I had continued to try and be upbeat etc. I was smiling a lot. We had a lot of fun. But I think I was smiling more than I usually do with her even though we often have a great time together (she is my biggest supporter and I love her dearly, not just because of that, but she is truly one of the kindest people I have ever had in my life). Mid conversation she stopped and said, "honey, you don't look well today." I told her I was fine, that I'd feel a bit better soon. She was completely empathetic but somehow I felt better that I had not burdened her with how I was really feeling. And I did feel like I was going to be a bit better soon. After her visit I was able to continue to wind down and relax and I did feel a lot calmer than I did when I'd woken that morning. I haven't explained myself well..trying to get to a point...I think her comment showed me that some people still take notice of how you are in a kind caring way even if you are smiling. Similar to your doc. I still haven't quite made my point. I'll give up for now. LOL. Lyla, thankyou for your response. It has helped me. I'm just trying to change my attitude/response to what, most of the time, seems an impossible situation. Thinking of a new slogan for myself. I just tried this one. "It may take my health but it's not getting any more of my spirit.' Not to sure about it. LOL. But it will do for today. I want to be fun to be around, not a drag. Today will be a challenge to try and stay a little smiley as one of my most hated symptoms is giving me a hard time. The challenge is not to get caught up in it emotionally. To try and give it absolutely no more concern than it demands. Yesterday I woke with a breakthrough migraine and decided not to take a med for breakthrough migraine and I think my newly adopted (and still at the practicing stage) attitude might have led to that migraine resolving itself later in the day without becoming a crisis. Coincidence, probably. But not entirely convinced it was just coincidence. Not sure. But trying to be accepting and put a smile on my face is certainly not hurting me. I don't know, but waking up and remembering to smile (it can take a few minutes to remember, lol)....well, it just feels like it's going to help me. And those around me. I thank all of you for your support. This is the place where I can 'tell it like it is, without having to burden family with it all. Thank you Lyla. Especially For your encouragement. I've had that sort of 'invisible illness' experience too. I actually went through a period of wishing it was visible so I didn't feel I had to be always explaining myself. But I've realized I just don't have to explain myself. That, although it helps for people to know I'm not doing so great sometimes, I don't have to overshare. with so much thanks, blue

The ssri and snri meds I have tried did not agree with me. I did try one last type a couple of years ago, called Valdoxen in Australia -- it was relatively new then. It has melatonin in it, if I remember correctly. It gave me the most wonderful sleep. But was a migraine trigger. If I wasn't a chronic migraineur I would have stayed on it for the sleep effect. blue

Thanks everyone for your responses. Looneymom, you are a championmom. I read your posts regularly. Becia, I love your Dad's "Smile, it makes them wonder what you're up to." LOL. Plus I can relate to 'what did I do to make the good stuff end?'. On a reasoning, logical level I know I did nothing. Or if I did, it was a part of just living. But I'm also an emotional person and sometimes it's very hard not to feel that we are somehow responsible for our bodies not co-operating. Sometimes I just defy logic, to my own detriment. Thanks for the hugs, Alison. I've got more smiles on my face. Gjensen, I'm glad to hear you can stay in good spirits most of the time. It encourages me. blue

Thanks Corina, I woke up and put the smile on my face this morning, but my smile came naturally when I read your post. You made me feel better. No small thing! blue

I get the palpitations a few minutes after I lie down but not every night as I used to. I wake frequently during the night and along with sweating and feeling hot I will also have more palpitations at least once. I answered no to dizziness. If I try to lie flat on my back with no pillow or a small pillow under my head I get dizzy. But I've adjusted things so I sleep on my side and with a heap of pillows under my head and upper back. (Someone else on the forum does this and referred to it as her 'mountain of pillows'). When having any tests that mean I have to lie on my back, or when seeing the physio, I request a couple of their pillows or I'm going to feel dizzy and ill almost immediately.

Hi Bren, I just quickly looked up Graves Disease so I had some idea what it is. It seems to have so many symptoms .similar to POTS. It's lucky you, if not your docs, were on the ball. I'm thinking you are probably now on meds for it? Hope all goes well. A very good example of how we shouldn't assume everything is pots related. blue

I seem to remember that name. There were a few different machines in the 'breathing lab'. This is about 7 plus years ago and my memory is sketchy. I'd been in hospital by then for at least a week so was well rested before the test but the technicians were really understanding. I think the machine my pulminologist/allergist has in her office may be called a spirometry. Whenever she tests me on it it's very uncomfortable. Have to do it twice. The energy and breath it takes to do the test is big. blue

Glad to hear you are home now, and that all is well. It's tough when as a sick parent you are called to do these sorts of things but you made it through and more power to you.

thanks Brecia, The 3 positives is a good idea. I'm really glad to hear it helps you. And may well try it in the future. I've had to come to accept the pots stuff and all the rest is not going away anytime soon. But that if I persist, one thing I can work on changing is my attitude. If I can just remember to put a smile on my face each morning, no matter what, I will consider that a win over this crappy disease. Well done on the signing in Church. I'm an avid reader of Victor Frankl's "Man's Search for Meaning," and when I find myself feeling so down, like I have been lately, I pull out this little book and read it. Your giving of your time and energy (those precious spoons) towards signing for someone has real meaning. Well done, you. blue

I feel hot more than I don't. In my case, I think it's a combination of erythromelalgia (I was diagnosed with it when I was diagnosed with pots), and pots induced temperature irregularities, and chemical sensitivities (chemicals in a number of meds, and many foods mostly). I'm always thirsty and drinking water or combination of milk and water, constantly through the day. Today I'm hot (but not too bad) but the bottom of my feet are burning, red and a bit swollen making it uncomfortable for me to walk -- that's a classic erythromelalgia symptom, although generally it doesn't happen so much in my extremeties but other places. blue

About 7 years ago my pulminologist who is also an allergist ordered breathing tests for me in order to check on any lung damage. I have mild symptoms of asthma and need to use bricanyl but only very, very occasionally. The tests are performed in a breathing lab -- forget what the correct name of it is --, breathing into tubes and other things and takes about an hour. A number of different tests on different machines done by technicians. It's exhausting but it showed I have some minor damage to my lungs but nothing my pulminologist was worried about - she lowered the dose of the preventative asthma med I was taking at the time. I thought of it as the 'definitive' test in regards to my asthma. Lejones, did you have any success in finding about your allergic responses to medications? blue

Over the past 12 years I have grown more and more miserable. I find it hard to keep my spirits up. I've got the pots symptoms, erythromelalgia, the pain of all sorts, depression, and now lots of anxiety, etc. Each morning I wake up with something hurting or 'wrong' with my body or head - some symptom or two. And I know my grim face betrays how I'm feeling. And I also know my husband is sick of seeing me look this way. As are my grown children. Although I laugh at times and smile when there's a joke or one of my grandchildren does something that makes me smile, I mostly have the expression of one who looks absolutely miserable. And it does not serve me well. Not only does it depress those around me, it makes me feel weaker not stronger. So, when I woke up this morning I pasted a smile on my face. Essentially I want to just smile instead of grimace. I figure that if I can do that, the world can only get better for me. I'm writing this here as a reminder to myself -- so I don't 'slip back' and forget to do it. blue

Hi Corrina, Rolling over causes me tachy too. And then I'm wide awake. Hi Charmedlinz, I thought I was the 'queen of pillows' but I only need 4 at the moment. Never got to eight. Many nights I find it easier to try and get some sleep on my couch. One arm of the couch sits against a corner wall so I can pile up my pillows and they tend to stay in place. And the narrowness of the couch stops me rolling over and keeps me on my side. blue

I wake up often at night. My sleep is fractured. At some point I will wake up feeling that nearly my whole body (not my head) is sort of vibrating very slightly. Or maybe a better explanation is it feels like my body is pulsating -- very mildly but fast. When I take my pulse it's not abnormal. I can get tachycardia when laying down and resting, upon waking etc and it feels entirely different. I've also reached into my hip pocket many times to get my 'vibrating phone' only to find it's all vibration, no phone. I figure it's just one of those weird things. And figure that no one has yet died of a vibration, have they?

I'm 58 and one of my fears is that I do get so old and I find I can't manage my symptoms anymore. For example: the need to shower (in cool showers )often to cool my burning sore skin caused by erythromelalgia. Also, the difficulty I have with keeping my bowels moving and having some carer who thinks they can just give me any old laxative to get the job done (I react to so many of the usual laxatives). And how am I going to afford my meds? ETC. I try not to think about it too much but this stuff does enter my mind at times. blue

Yep, bending forward, down can make me feel lightheaded. Lifting my arms above my head used to do it too but this has stopped -- a small win there. It's off the point a bit but I was adviced to crouch/sort of squat when I needed to get something from the floor or a low shelf rather than bending over, but find that upon standing back up I would experience tachycardia. At that time I could walk for hours (although I'd get tachy when I had to stand and wait at lights to cross roads so eventually I learned to sit on the pavement) and swim for 2kms -- I was very fit. I had that tachy symptom many years when standing and squatting -- long before diagnosis. I just adjusted my actions to it, thought I was a bit weird but never questioned a doc about it. I used to find that just about any weird 'little' symptom I asked about way back when was dismissed. blue

I agree with you tcp. keeping mentally active as possible is so important. Although it can be hard, sometimes, to avoid overstimulation which is a bummer. blue

Thanks, Enid. Much appreciated. If only a station in Australia would take a look at this! blue

I'm hoping the experience goes well for you! blue

Hi Elizabeth, I was diagnosed with erythromelalgia at the very same time I was diagnosed with POTS about 8 years ago. The erythromelalgia came in 'flares' for me and although the pain and heat made me miserable at times, I am experiencing it on a consistent basis now. The past year and half it was getting worse, but a bad reaction to a generic medication (pfifzer took the name brand off the market here in Australia leaving me with only generics to continue on) seems to have made it an ongoing problem. I scrambled for another generic version which didn't seem to cause the same problems as the first one I tried but after a few weeks of my erythromelalgia settling down it's gone the other way and is becoming more of a problem. The only times I can't feel it now is when I'm in throes of intense migraine that sometimes breaks through opiate medication and I find myself just having to ride out the migraine over days. I'm wondering if you have found any good forums for this problem? blue

Hi Angeloz, mine is not pale, exactly the opposite because of constipation/slow moving transit. But like you I had my gall bladder removed and I now think it was autonomic problems before diagnosis. The pain I was getting that was 'gall bladder pain' continued for years after having my gall bladder removed. My gall bladder was full of stones however, but they apparently weren't causing any trouble. It was after my gall bladder removal that constipation became a more serious problem for me. I have to wonder if I needed my gall bladder. Anabanana, I agree with Corinna. I'd be asking my doc about it. Blue

I had a sort of similar day, yesterday - my head felt buzzy, fuzzy and sort of removed from stuff -- but not what I call brain fog. Not exactly what you are describing but still a 'head reaction.' I do find that a stressful situation will bring this on and I know it was no coincidence that the night before I had experienced a stressful situation. I just get so revved up with anxiety or anger or distress that it throws me into that weird 'head space.' I could feel it coming on after the stressful situation had ended, during the night I felt it each time I woke up. And all of yesterday it was markedly worse. I took it very slow yesterday and, knock on wood, although I still have the feeling in my head this morning it's not as bad. I get especially anxious about it as it offer a trigger for breakthrough migraine but so far this has not happened this time, but experience tells me I'm not out of the woods. Having a too good a time can also bring on this feeling. Too much laughter and excitement can cause it. GRRRRR! It's like my one part of my autonomic system gets overly revved up and the other part doesn't step in to counteract it. A very unmedical way of putting it, I know. But that's what I feel is happening. I also experience increased anxiety. I did not get any breathing issues though. Although I have noticed that there are times when I'm conscious of my breath being ragged. On the outbreath I breath out jerkily, no smooth outflow of air, and then I gasp in my next breath. This doesn't happen a lot but it's a newish symptom. I just realized I'm doing the breathing thing right now so maybe it's happening a lot more than I realize but I'm not always aware of it? blue

Do you see an allergist?

Goshi, I just wanted to add that my fitness levels can improve to where I can walk for up to an hour and swim a kilometre or more. I haven't 'broken' anything permanently. At least not yet. (I do keep in mind those people who have dys. that are bedbound and nothing they do seems to be able to change that for them -- not suggesting you are one of them but my heart goes out to those that are unable to make improvements at all). blue

I get fit on a regular basis, have a set back and am mostly couch bound for months and then feel up to being able to start exercising again. Rinse and repeat. Yesterday, I tried to start again and walked (strolled, really) for 15 minutes in the autumn sunshine (I'm in Australia). An attempt to start exercising again, but also raise my vitamin d levels through some exposure to the sun. I was concerned that I'd bring on a migraine (the worst symptom I get often caused from being on my feet too long -- what amount of time is 'too long' can vary from day to day and I can't predict it) but it didn't happen yesterday. So today I will repeat my walk. It's another beautiful day. Hopefully I will get back to good fitness levels like I have repeatedly in the past. Although I have had made quite a few attempts in the past months to exercise that have ended badly. It's frustrating to get fit and then crash but it seems to be something that I have to keep on working with. Because when I am fitter I manage pots a bit better. Nothing to rave about but I do see slight improvements. Plus exercising outside lifts my spirits. I feel like I'm participating in the world. For me, it's a necessity that I start very slowly. blue