Ravenau1

Thanks for your replies! Lifesaver, very interesting that it was your left nipple too! I presumed that it was because of the ring in that one, but perhaps not. Though mine aren't any different than usual visibly. I hadn't been able to find nipple pain/soreness as a listed side effect anywhere but it was just too much to be a coincidence. Nice to know I'm not going crazy lol. Simmy, I guess the blood flow to the male nipple is different than the female? Ours are a bit more complicated with the milk ducts and such, though I have no doubt that the hardness and discomfort you experienced is the same mechanism that's causing my pain. I'm on 5mg twice per day, and I haven't really noticed any difference in the way I feel (apart from the pain and the chills/creepy crawlies that is), can I ask what benefit you're feeling? I felt dramatically better on Florinef but the midodrine I'm not so sure. Perhaps the Dr will need to up the dose, not that that's a happy thought! Bellamia, I wonder how many other people might be experiencing this and putting it down to something else! I know that if I spoke to my Dr about it he would say to take out my ring, but I KNOW that's not the thing causing the problem.

We had a pretty brutal summer this year so I am looking at one of these for next summer. Certainly seem like they would help

Ok, so I started on Midodrine a little while ago and at first was just getting the crawly/tinglies. Annoying, but no big problem really. Then I start to have some nipple 'issues'. Now I'm pretty sure we're all adults here so I can talk about this without freaking anyone out I have some... 'hardware' in my left nipple, in the form of a silver ring, had it for years and years. So my nipples were a bit uncomfortably sensitive for a few days then wham! My left one really starts to hurt. Hurt ALL day, and at night even the sheet brushing over me would wake me up, if I happened to roll over onto my stomach during the night then tears would ensue. Putting a bra on became almost impossible but having anything rubbing against it was even worse. Now, there was nothing visibly wrong with it, no trauma, no infection, no swelling or heat or anything that would tell me there was a problem with the piercing itself (I have a few, I know the signs). So yesterday and the day before I didn't take any Midodrine, just to see what would happen and by yesterday morning all the pain had gone. Not even mildly painful. I started back on the Midodrine today and will see what happens but it has to be that. I've never had anything like this happen before. Anyone heard of anything similar? Thanks

Hi all Well after being on Florinef now for a while and that working well I started midodrine yesterday. At this stage 5mg twice a day. I haven't had any major problems with it but I am getting the awful crawly/tingly/goosebumpy/itchy/tickly feeling all over my body within about 20mins of taking each dose. It's definitely worse on my scalp but I even have it on the bottoms of my feet! Does anyone know of anything I can do to lessen it a bit? I mean it's not horrific or anything but it's pretty weird and uncomfortable. I keep twitching, scratching and rubbing and I am sure I look weird lol.

I personally haven't driven at all since my first faint. It's probably been the hardest thing about all this for me, just not being able to jump in the car and go wherever I want. Even now while I don't faint or have dizzy spells with the frequency that I did before I am still not comfortable driving. I can't imagine how I would live with myself if I passed out behind the wheel and hurt someone. My husband now drives the lovley new car we bought for me only 6 months or so before all this started lol, oh well, at least he enjoys it!

I've been on Florinef since the beginning of the year and it has made a huge difference. It's cut the fainting down by about 90%. I'm on a fairly high dose now and I have noticed that it's made me a bit 'puffier' but with how much better it's made me feel I'm not really that worried about it. I've put on a heap of weight since the whole pots thing started so at this point a little more hardly seems noticeable lol. I haven't noticed that I pick up more infections/illnesses on it, but I have to say that since I had chemo and radio years ago I pick up pretty much everything that I come in contact with anyway. I started midordrine yesterday also. And came off my beta blockers when I started the florinef.

This is an interesting topic! I think a lot of how you feel has to do with the attitude of your partner. I have had serious/chronic illness with two different Husbands (I'm starting to wonder if my body is allergic to marriage! ) I got married the first time at 21 to a guy I had been with since I was 14. I fell ill with cancer pretty soon into the marriage, with a relapse a couple of years later. I worked part time through the whole thing. My Husband was NOT supportive. He wouldn't take time off work to take me to the hospital (and that's wouldn't, not couldn't), he would constantly complain about the state of the house and the fact I hadn't done housework. He complained about me working part time, complained about me having no hair, complained about the weight gain during chemo due to the steroids. One night I was in so much pain I cried all night and was eventually kicked out of the bedroom because I was keeping him awake and he had to go to work in the morning. He controlled the finances, I never even knew how much he earned! Anyway, he wasn't a nice person and needless to say, my self esteem took a hit. A few years down the track and I was divorced after finally working up the nerve to leave. Living by myself, managing my own money, working about 30 hours per week (never have got the stamina back for full time work), even learning to order for myself at restaurants! lol. I even bought a house! I swore I would never again be in a position to let someone do that to me again. Well, the best laid plans and all that! lol. On a holiday in the US (I live in Australia) I met my current Husband. A bit of whirlwind 5 weeks later we were engaged, and after 2 years of long distance relationship he moved out here and we were married in October 2006. Then during 2008 I started having health issues and was finally diagnosed with Dysautonomia. The difference between my current Husband and my ex could not be more pronounced. My Husband is wonderfully supportive, loving, caring, compassionate. There's nothing he wouldn't do for me. He never makes me feel bad about not being able to do as much as I would like around the house, never makes me feel bad about myself. He builds me up and boosts my confidence. I've gone from working 25-30 hours per week to one day, to not at all. And he's fine with that. My Husband is like thankful's, he's proud of the fact that he can 'provide for me' during difficult times. I think it helps him feel less helpless, which I know he often does in the face of my illness. But like you, I'm the one with the issues about it. It's probably the thing we talk about the most. My feelings of lack of independence. Which are definitely made worse by things like not being able to drive, work etc. All you can do is work on it together, be open and honest with each other about your feelings. Negative and positive feelings. Neither of you should be afraid of telling the other when you are feeling down, or frustrated etc. I think it's definitely worth working on, your guy sounds like a 'Keeper'

Hi Suzie I am in Australia too, in Perth though. My advice regarding Dr's is to keep going to different Drs until you find the right one. That's what I had to do (after some wonderful advice from people on this forum a while ago). I now have found a Doc who is not only very capable, but genuinely interested in my case. I asked my GP to refer me to a Cardiac Electrophysiologist, and I wish I had done a year ago! He immediately went off and researched some of the long term side effects of the chemo and radio I had in my 20's and made me feel like I wasn't going crazy lol. The first thing he did (while organising other tests and "having a think" about my case) was to take me off the beta blockers I was on (which were not agreeing with me, but my previous Cardio had told me were my only option) and put me on Florinef. I take 100mcg per day (which people tend to say is too high a dose, but everyone is different and it works for me) . Now, at first I was VERY wary of taking Florinef because of other people's experiences with it. Also, my whole life my blood pressure has been on the low side apart from the last 12 months in which it has tended toward the high side, so the possible increase in blood pressure worried me too. But I decided eventually that I would give it a try. It's been an absolute godsend to me. I used to faint regularly, multiple times a day sometimes. I haven't fainted once since I've been taking the meds. I actually have had an 'event monitor' for the last week but there's really been nothing going on to record apart from one dizzy spell and some palps. The only things I've really noticed on a negative note has been that for the first week I didn't eat very much, felt a bit queasy. Plus I can feel a bit queasy when in the car (passenger, I don't drive). My treatment is definately still ongoing, and there is more my new Cardio guy wants to do but at the moment I feel better than I have since I got sick. So my advice regarding the Florinef is that you try it. If it doesn't agree with you, your Dr will organise for you to come off it.

I am 34 and have been married for 3 years. My Husband works full-time with 6am starts. I currently work about 5 hours per week (when I can) but before I fell ill I worked 25-30 hours per week. My Mother comes to stay for a night once a month or so and helps with the housework etc, she would no doubt help more often but my parents live 3 hours away. My Husband doesn't really help with the housework etc but he is very supportive in many other ways.

My Husband is terrible at housework! Plus he could also burn water lol. But at the same time, he never ever criticizes my housekeeping abilities (or lack thereof). Sure he never picks up the vacuum but it's not important compared to all the things he does do for me. Since I've gotten sick, I've learned to live with a bit of mess.

Very interesting to read all the posts here! This is something that I've been thinking about too, I am 34 and have no children. After a disastrous first marriage I am now married to a wonderful man and do occasionally think about kids. My main fear, however is that I faint. What happens if I faint while bathing or carrying a baby? I often wonder what women in this situation do.

I have terrible fatigue also, and it doesn't seem to matter how much or how little I sleep. Sometimes I sleep for 18+ hours per day and sometimes I can hardly sleep at all. I sometimes nod off on the couch but most of the time the fatigue is like being in slow motion with a lead body (if that makes any sense! lol) like I can't quite summon the energy to pick something up etc, or get up and walk around.

I would like to thank everyone for their advice. I have an appointment the day after tomorrow with an Cardiac Electrophysiology Dr who says that one of his 'special interests' is Syncope. I am quite excited to be seeing him and hopefully he can help me.

Thankyou Sunfish. I did do a search on the topic before I posted but must have missed that, probably because I was looking for 'Emergency' and 'Hospital' in the thread title rather than 'ER'. My apologies My husbands cousin recently passed away due to an untreated minor head injury, and as I regularly hit my head when I faint my husband has been very concerned that I don't seek medical attention afterward. I have actually fractured my skull twice in my 20's (not POTS related, more stupidity related lol) with no real ill effects other than monsters of headaches, I know that the force has to be great to do real damage. My initial post was actually prompted by a faint I had where I hit my head and split open my scalp and didn't feel that I needed to see a Dr. My husband seems to feel the need to want to rush me off to hospital every time so I was curious as to how often others went.

Hello fellow housebounders! I am home pretty much 6 days out of 7, though I do go to work (sometimes!) on a Sunday for a few hours. My Husband does kindly take me out of the house when I am going stir crazy, or for shopping etc but I don't like to ask too much as he has a very physical job and comes home very tired. I am 34 and married - 3rd wedding anniversary coming up in a couple of days - and I live in Australia (my husband is American though, I met him there in 2004). I love Facebook, and emailing! It really helps me feel connected to the world and gives me a good way to interact with people, even when I'm not feeling great. Sometimes the 'face to face' stuff freaks me out because it takes so much out of me. I also like the fact that I can 'go under the radar' if I'm not feeling sociable. It's hard to do that 'face to face' lol. I keep myself busy, I love making jewelry and doing needlework. I used to work in a needlework store for nearly 11 years so I have a huge stash of thing I'll probably never get to lol. I have two full-time cats, and two part-time cats. My parents travel about 9 months of the year so we look after their two moggies while they are away. I also read alot, I love audiobooks as well as regular books, they're great to pop on the ipod while pottering around the house. I've always been a bit solitary, so the isolation doesn't affect me as negatively as it does some people, but still, it gets to me sometimes! Nice to meet you all

Thanks everyone, you've given me alot of food for thought! I have made an appointment to see my GP and am going to ask to be referred to another specialist.

Thanks everyone for replying! Jana, I have a medic alert bracelet with my symptoms etc and a contact number for more info that I never take off. They're wonderful aren't they? I wouldn't feel safe stepping out of the front door without it. My work really wanted me to have one before I returned in February this year. BellaMia, pat57 and Mrs Burschman. I cannot find anyone in my state that specialises in POTS, I believe there are a couple of Drs on the other side of the country, but frankly they might as well be on the moon as far as accessibility for me goes. The Cardiologist I saw had never seen a case of it before, though he had read about it. I was prescribed propanolol at first but it really didn't agree with me so we switched to the atenolol. It's not great, it gives me migranes and messes with my sleep but I generally feel better when I'm taking it, even though it doesn't keep my heart rate down like it used to. My resting heartrate when I'm sitting down is still about 120 beats per min, and when I stand it varies wildly. The Cardio told me that there's nothing else I can really do without having surgery - he talked about a procedure to 'deaden' part of my heart to slow it right down then put in a pacemaker to speed it up to normal, I can't remember all the technical terms but that's what I understood about the procedure. My heart itself is quite healthy according to all the heart tests I had so making my heart reliant on a pacemaker seemed like a pretty drastic option and I said no. When I first started having problems the thought was that my heart was showing damage due to the years of chemo and radiation I had in my early 20's, and after the tests showed a healthy heart the Cardio was a bit lost I think. Sometimes he would say that I 'must' have low blood pressure during my faints, but as I never fainted on the tilt table or while I was hooked up to the holter monitor he can't be sure so I am not on any kind of meds for that. When I'm feeling 'fine' my blood pressure is a little low but within normal limits. But then at other times I was told that I faint because when my heart is beating so fast it doesn't do a full pump, therefore doesn't move enough blood around my body. Not enough bloody around my body = not enough blood and oxygen to my brain and therefore a faint. I guess both could be correct, or neither lol. I would love to see a Dr that might be able to make me feel better! I feel so lost most of the time and I had to do all the research on this disorder myself as the Cardio really didn't tell me much at all. And to be honest, at first I was relieved to have this diagnosis and not something more 'serious'! I guess at that time I really didn't yet understand the impact it would have on my life and how much it would DRASTICALLY reduce the quality of my life. Now, looking back, I wish it had been something, even if it was heart damage, if it was something they could fix! I've dealt with serious illness before, I spent years in and out of hospital with Hodgkins Disease but with that there was a 'finish line' (one way or the other). To me this is so different, and harder to deal with. I don't know when it might get better, or even if it might get better. Though I'm sure I'm not telling any of you something you don't already know and deal with yourselves! Before I started getting sick and feeling really bad I worked 25-30 hours per week, now I am down to 4 hours per week and sometimes I can't even manage that. It sure puts a strain on the finances. I don't drive at all now, I haven't since about a week after my first faint. I have fainted a couple of times while sitting down so I don't think it's safe for me to be driving. Thanks again

Hi everyone! I'm a bit of a lurker but I've finally summoned up the courage to ask some more questions lol. I had my first fainting spell in September last year and I was taken to hospital by my Husband as I gave myself a pretty good crack on the head. I was diagnosed with POTS several months later by my Cardiologist. He promptly told me that I didn't need to see him again and that my GP would take care of me from then on. I take atenolol, as well as medication for my hypothyroidism and sleep problems. BUT I never really know what I should do! I faint at least a couple of times a week, and while I've never broken anything (bone-wise... I HAVE busted some furniture!), I regularly smack my head on something on the way down, and I am always covered in bumps, bruises, scratches, cuts and the occasional black eye. My question is, should I go to hospital if I faint? Is that excessive? I get worried sometimes that I will damage something and not know about it! I am curious as to what others do? Thanks Elana

I get very tired if I eat too much, I nodded off at the table the last time we went to my parents house for a roast dinner! but I don't get flushed.

I take Atenolol twice a day as the propranolol didn't work for me. I have vivid dreams... Dreams in High Def with surround sound lol. I also had alot of difficulty sleeping. My Dr put me on 30mg of Deptran before bed each night and it really helps me sleep, and I don't get the hungover foggy type feeling that I used to get when I took sleeping pills once upon a time. Didn't help with the dreams though.

Hi I chose 'other' for the last question. The main reason I have difficulty working is the fainting when I stand up for too long and the extreme fatigue. My job is standing up and walking around so it does make it difficult. I've had to cut my hours down to 10 per week as it's all I can manage. Luckily my work is very accommodating about when/how much I can work. And luckily I work somewhere accessible by public transport as I can't drive at all. Also, I chose 'Been dealing with symptoms for less than a year'. I was diagnosed in December after a couple of months of tachycardia and fainting, however I think I may have had the condition for longer as it explains some of the symptoms I had post chemotherapy. However I can't be absolutely sure of that.