Brye

Just typed a whole long response and lost it in cyberspace!! Hate that! Recumbant biking is my favorite. I do a cardiac rehab type class at the hospital gym that has helped. My HR control has been key. Have you only tried 1 beta blocker? What problems did you have with it? Showers are my worst nightmare. I'm shower chair dependent for sure!! Don't give up!! I've been battling this 3 years and have improved in some areas. Not where I want to be yet but I can't give up!! I mailed that form from the lawyer if you decide to go the disability route. You can look those over and maybe they'll give you an idea. Hope you get some answers and find some improvements sooon! Brye

How do they know it's mono causing your problems? I thought once you tested positive for EB virus you were positive forever. I've been having some symptoms similar to my 1st bout of mono but I thought there was no way of telling after you tested positive once. I wish I had some suggestions but I'm really struggling right now myself. Especially with the FATIGUE!!! Brye

I take xanax about 30 minutes before going to bed. It feels like my adrenaline doesn't shut off when I lay down. It doesn't help with that feeling but it makes me fall asleep sooner so I don't have to deal with that feeling as long. Not groggy the next day because of it. Brye

I've been taking atenolol almost 3 years now. Very helpful with heart rate control for me and also helps control my tremors. I tried the midodrine recently but it didn't do much for me and made my scalp itch and that drove me crazy. I may need to stop the atenolol as well. I think it may be causing some memory problems. There are some documented cases of atenolol dementia. I'm hoping that's not what I'm experiencing because I would hate to give it up. Hope it works for you!! Brye

ER nurse to ER nurse! I am also unable to work due to my POTS and actually don't know that I will ever be able to work in an ER again. My hand tremors kick in if I just am in a hurry to do something much less stressed about something. I never saw a Phys... doctor. My cardiologist was my main resource. MY pcp was very supportive as well but I don't believe he was critical. I was approved on my 1st try but I'm a frequent fainter as well which I think was key in approval. High risk for syncope I think was key for me. I did have a form a lawyer friend had me submit with my claim that my doctor filled out and it made it clear what my limitations were that made me unable to work. I've mailed that out to several people on the forum and I would be happy to send one your way if you want to check it out. It gave the doctor a chance to estimate the # of hours I could stand/sit/walk/etc. Also he said it was helpful to make it clear the # of days I was likely to miss work / month. Maybe the doctor or your cardiologist would be willing to fill something like that out. It's not really supporting your request it's just providing facts and allowing ssdi dept to make the decision. So stressful!! PM me your address and I can send you the form if you want it. Wish I had better advice! I was so shocked and thankful to be approved the 1st time around and I'm not sure what the reason was. Good luck and hopefully you'll get a surprise approval as well. You never know! I never even saw an autonomic specialist. Brye

Since you had a bleeding complication this is probably something you should call your doctor and ask. Bleeding does occur occasionally after this procedure and they may be able to give you a better idea of what to expect. Good luck! Brye

Thanks so much for all the responses. It's so hard to nail down a cause of memory loss because there are so many options to choose from. I pick and choose what to complain about because every problems comes with a whole other work up by a different doctor. I'm almost embarassed to complain about fatigue and memory problems. 4 kids, POTS, meds, Vit deficiency, 4 kids, brain fog. I'm doomed to be tired and I get that but I don't want the dementia thing to start in my 30's. Nowwhat ... it sounds like you've tried just about everything. I'm terrified to give up my atenolol but I can't take much more of this. I'm afraid to see a neuro doc because I know they'll just order a bunch of tests. I need to take one problem at a time and right now I'm trying to resolve the fainting. Angelika ... great to hear the toprol worked well for you. The atenolol is working so well for me right now it's hard to switch. I don't even have exercise tachycardia. I do have low BP problems so I'm hoping it won't make that worse. Mc Blonde ... scary!! So far it doesn't affect me sitting down thank goodness!! I haven't gotten lost yet. I was a bit embarassed the other day when a friend asked me what I did that morning and I had no clue. I also recently forgot to take my socks off getting into the shower. To me that sounds like something a brain injured patient or geriatric person would do. Frustrating!! It totally feels like my brain is starved, especially when I exercise. The doctor told me though my BP was good during my stress test so this probably wasn't the cause. Who knows. I may never know! Sarah 4 ... do you take another Beta Blocker then or how do you control your HR's? I totally feel like my brain isn't getting enough blood or oxygen as well. It's easier to claim it's from fatigue, stress, etc. Thanks so much for all who responded. I appreciate your input and I feel for you all. It is nice to know I'm not alone. My biggest fear is that I'm just doomed to a life of fatigue and brain lapses. Brye

My memory problems have gotten progressively worse. I know there have been recent posts on this about the feeling of losing your mind. I'm definitely getting there! I know some of it is POTS and some is from fatigue. I have a vit D deficiency as well. I discussed it with my cardiologist and he said it definitely could be the atenolol. I've been taking it almost 3 years. I didn't know atenolol could cause memory problems but apparently it's not so uncommon. Anyone out there have to stop taking it for this reason? I'm so hesitant to change meds ever for obvious reasons. Just wondering if there are any metoprolol users out there and have you had success with it. My atenolol really works quite well but it's only a matter of time before I forget a child at the shopping mall. The atenolol also really helps with my hand tremors. That's the 1st thing I notice if I miss a dose. Any advice would be appreciated. Brye

I have frequent problems with hair loss. I have POTS and don't take either of those meds. Not sure the cause of my hair loss. Could be the dysautonomia I guess. Brye

I can't decide if exercising does me more harm than good. I love working out but it is exhausting for me. I know I'm a whole lot stronger than I was 11 months ago when I started but the fatigue is almost more than I can stand. I typically work out MWF. I have a set work out I do and it takes from 1-1.5 hours. Recumbant bike is my favorite part because even if I feel a little lightheaded I know it's not far to the floor. Brye

I've walked in to take my meds and walked out and in less than 5 minutes can't remember if I actually took them or not. Then I'm afraid to take them because I'm not sure if I took them and I don't want to double dose. My short term memory is terrible. I feel like I'm losing it. I need to get one of those med trackers but I have to find one that locks so my kids can't get them. I can normally tell within 4-8 hours because my HR speeds up and the tremors kick in. I'm not that old either but I have times I feel so old. Between the shower chair, meds, cardiac rehab, handicapped parking ... you get the idea. Hope this doesn't happen too often for you. I feel your pain. Brye

I don't recall having to enter a code. Is that for a diagnosis? When I did mine it was made clear there was a high risk for syncope and I think that's why mine was approved on the 1st try. Good luck! Sorry I can't help with the code. Brye

My last intermittent rash went along with Mono. Have you had mono? Just a thought. Brye

It's so hard to tell where the fatigue is coming from for me as well. This last round for me when my fatigue became excessive to the point I thought I was losing my mind I went to the doctor and that was the only thing that came back abnormal. The supplements did help to get me back to my normal tired state. When I was done with my round of supplements of vit D I had a relapse of vit D deficiency and the reason I could tell it was low was due to exhaustion. I was so tired it was affecting my memory and even my driving. Hope your supplement helps!! Brye

I was an ER nurse. I tried to return to work but I couldn't get the doctor to write me a work note without the possibility of fainting so the hospital wouldn't take me back. They were even willing to hire me as a chart auditor and it was denied. It was dissapointing. I have 4 kids though so that's a full time job in itself. Brye

Thanks for clarifying! I was backing out if there was any severing involved!! Fortunately my tachy rhythms have improved greatly with the Beta Blockers. Now I'm trying to get a happy balance. Hope it all works out for you and they can find a way to control yours!! Brye

No Potsgirl ... I can't be hearing about pacemaker complications during this key decision making time for me!! Maybe I shouldn't have read this one. Okay that was my selfish statement!! Sorry to hear you're having more heart problems! It's such a scary thing to have to deal with on top of everything else!! Keep us posted on what they find in the end. I'll be thinking of you and hoping all works out well. Brye

I've researched pacemakers quite a bit and haven't found anything about severing a hearts natural pacemaker. If I get a pacemaker I just want to be sure I'm not missing something. I was under the impression you could even deactivate them and let your normal rhythm come back if you didn't need the assistance of one anymore. Thanks for sharing if you have any info on this. I'm just double/triple checking!! Brye

I've been contemplating a pacemaker for about a year and I think I may give it a try. 3 cardiologists now have recommended it as probably helpful but of course no guarantees. It would not control the tachycardia, my beta blocker does that fairly well for me. It would control the bradycardia from the beta blocker and the dysautonomia. It may give me a little more energy (which I desperately need) and I'm thinking my improve my orthostatic BP's a little. I figure right now my HR is going from the 30's to 40's sitting to 90's when I stand. Maybe if my HR started at 60 when I'm sitting down and goes to 90 maybe I won't be quite as symptomatic. Hope that makes sense. Kind of hard to explain. I'm desperate to feel better and I'm thinking it's worth a try. My diagnosis is POTS as well. Initially my HR was shooting up to the 160's when I stood so the beta blocker and some conditioning has really improved that. It's a really tough decision when there is no guarantee. Brye

I'm a RN and sometimes that backfires. They assume you know all and I had one doctor who almost expected me to treat myself. I would go to an appointment and offer a suggestion and his favorite response was "we can do that if you want". It made me wonder what I was paying him for. Pacemaker, new beta blocker ... "if you want" Who wants a pacemaker? I wanted him to use his experience and offer some suggestions. On to the next doctor!! Brye

I just saw a TLC special the other night about this. They were covering 2 patients with a severe childhood onset case. My daughter (6) asked me if this was something she could get. I told her no she probably would have developed symptoms by now if she were going to get it. Guess I learned something new, didn't know there was an adult onset type. Hope his case isn't too severe and he has good treatment options. Brye

So far no BP spikes here on Midodrine. I take 5 MG three times a day. It has improved my BP's, not sure I've noticed a huge difference in how I feel though. Odd side effects ... scalp itching that I can hardly stand and chills. Not sure it's the drug for me. This is my 2nd trial of it. Brye

Wow! I can't imagine working out in support garments at all much less 40-50. I'm such a sweater I can't imagine. Wonder if I could get by with some lower compression ones though when I worked out. Probably better than none The recumbant bike is definitely my friend as well. No amount of "crash mat" (love that one) can make a fall off an eliptical runner graceful so I've given that one up. I have my BP checked before and after usually. If my systolic is below 90 before I start I just head home to take a nap. I have a hard enough time staying on my feet. Fridays are always worse for me as well I think I just start off more tired on Fridays. I have good days and bad days as well. For me it's learning when to quit that's been a challenge. I don't get the warning signs before I faint so I'm very careful if I'm extra tired or not feeling well I just call it quits. I really want to stick with it especially as the meds are being adjusted so I can see which ones are working and which ones aren't. Right now I'm taking Midodrine to raise my BP and it's helped for sure with that. I just wish I could get rid of the feeling there's not enough blood flowing to my brain.. I'm also very dedicated about warm ups and cool downs. For me the cool downs are critical!! Hope you are able to stick with it and they can adjust your work out so it causes less of a problem for you. I love my rehab class ... they have the best potlucks and where else can you go get the latest retiree jokes going around. Brye

I do a cardiac rehab maintenance class 3 times a week. I get frustrated as well by some areas that don't seem to get better. I'm light headed almost the entire time I'm there, especially when my HR speeds up. I'm exhausted the rest of the day, nap is mandatory on those days and that's not always an option because I have 4 kids. I am however much stronger than I was when I started. My knees don't ache anymore and I feel like if I were being chased by a bear I could actually run. Stairs are easier for me because of it. You need to figure out if you're improving in any area. I still faint and my vitals aren't near perfect. I still need my meds to control my symptoms, but I'm getting stronger. If you can't find one area at all you're improving in it's time to change the work out or find someone else who can help. What equipment are you using? My favorite are the sitting ones. Less painful if I do pass out and I can work harder without the fear of falling!! Good luck. Not sure what's best for you, that's something you're the only one who can figure out but I sure understand your frustrations! Brye

Thanks for sharing! So glad she's doing better! Hope her progress continues!!