Tammy

Melissa, Hope your feeling better soon. For those who know Melissa, I'm wondering if they have checked into resistant forms of bacteria that could be causing the sepsis/pnemonia? Have they looked into MRSA as a possibility? the only drug that seems to work if that's the case is Vancomyicin (IV drug), unless it's VRSA, than that's a whole different area and not sure if there are any treatments that work real well. - Tammy

I'm having a very hard time parenting a toddler while being ill. I guess what frustrates me the most is that since I'm too weak to do much more than get myself out of bed and out to the recliner, my two year old pretty much is on her own for the day, watching lots of disney movies / cartoons all day. We have child proofed the house beyond reason as getting out of my recliner to grab something from her that she got into every two or three minutes was unbearable and I just physically can't do it. We've had to put a lock on the fridge door, locks on all room doors high enough that she can't open to get into as since she was born, I haven't had the energy to child proof any other rooms other than the livingroom and kitchen that she has access to during the day. The chairs in the kitchen are tied to the table or she will take them and push them to the counter and climb up and get into everything. All the cabinets on her level have locks and we had to put a door onto our stairway so she couldn't get to the basement and get into all the stuff that's down there also. Going outside to play is impossible, so she only gets to go outside if my husband has the energy when he comes home (he works 14 hour days and is also shot by the time he gets home). She's two and a half and I know potty training is something that needs to be instigated soon, but I have no idea how I'll have to energy or ability to train her to do so, and she still uses a bottle as it keeps her more content throughout the day, but it's terrible on her teeth. Basically, I'm failing as a mother due to my health and don't have the strength to try and get help either - since I'm not formally diagnosed with POTS (dr felt I fall into the positive range but was only borderline on the tilt table test) and my new cardiologist seems to think I'm not as sick as I am, I don't qualify for assistance. We love her dearly, but her days are a far cry from what I had envisioned for our children. We can't afford day care at this time and all our relatives/friends either work, are too old/ill themselves, or just choose not to help out (for a while we had some support but since it's such an everyday thing for me, it just got to be too much for friends/family to continue helping). The only thing that gets me through during my worst parts of each day is prayer, it's all I have to give me strength to not give up. - Tammy

I have to plan to take a shower when I know I'll have time to "recover" from it. Sadly, my husband ends up telling me I stink and tells me to go shower, but it's soooooo much work when at my worst. It's just crazy, as before this started years ago, and when I was able to work, my co-workers all joked about how I loved my long hot baths and at the time my husband put in a huge corner whirlpool tub in the bathroom we had added on to our home just for me since he knew I loved baths so much.... I think I got to use it about two times before I got too sick to use it and now it just sits there, unused. What a waste of lots of money for the beautiful bath tub I'll never get to use for a long time, if ever. Oh well, at least I live in a country that has running water so when I have to bathe, I don't have to try and walk 10 miles to get to the nearest watering hole. Ah, life.... it's all how you look at it! - Tammy

That happens to me to. on my left arm usually the nurse asks me if i have an extremely low bp and then tries to take it again, but ends up moving the cuff over to my right arm and then gets a fairly normal reading. not sure why this happens, but... hey, me too - Tammy

yup, weakness and especially the chicken legs feeling wobbley from extreme weakness is a biggie for me too. lots of salt and fluids seem to help this some and also high protein foods along with B vitamins and a vitamin with selenium in it seems to also aid, but takes a few hours to help and doesn't last extrememly long, but better than eating sugar and other foods that seem to really make my weakness worse. hopefully you'll find something that will help give you a little strength... prayers for strength is another good helper ;0) Take care, Tammy

Sounds like a little bit of discontinuation syndrome also, as you might want to check www.paxilprogress.org to see if that is what happened when you were off the Paxil. I just have/am experiencing the discontinuation syndrome nightmare on top of my everyday POTS stuff and wish I had never of taken an SSRI, so everyone is different! It never seemed to help me while taking it either, so that could be the difference also. - Tammy

Hi Sara, I don't really have much advice, but just wanted to give you support in the frustrations of dealing with medications that either quit working or ones that we can't tolerate. I can't tolerate beta blockers either, so understand completely. As for the Lexapro, I've never been on it so don't know. I do now know that if you feel it isn't working any more, make sure you don't stop it suddenly. I just did that 3 weeks ago and now realize it was a very bad idea and am having a SSRI withdrawal syndrome and it's awful, so keep taking the Lexapro for now even if it's not really working until you see your doctor and decide what to do. I have been on Prozac in hopes it would help with my tachycardia and didn't do much for that. Best of luck to you with finding something that will work again - Tammy

Hi Well as many of you know, I've been dealing with increased tachycardia and very irregular heart rythms the past month - way more than usual. Since February, I had been on Prozac for PMS and doctor also was hoping it was going to help my tachycardia issues. Well as of the 20th of May, I discontinued it due to feeling fluish and body aches from it. I was only taking 2 ml of a 5ml/20mg solution. So I didn't think I would need to taper (opps, should have talked to my doctor about this but honestly didn't think abou it). I watched to see if I'd start having any withdrawals the first week, and I couldn't even tell a difference other than the bodyaches went away. Than just totally forgot about it. Than on June 10th , I had a horrible tachycardia spell. Went to urgent care and everything looked okay. So called my cardiologist and he prescribed me Metoprolol to try. Gave that a try and went through **** so had to discontinue after about a week. NOW here's the catch, it never dawned on me that this tachycardia and now the severe racing heart I get everytime I wake up that has been going on since June 10th, could be a delayed withdrawal from Prozac. When I called my regular physician who prescribed the PRozac, she got really worried that I had suddenly stopped it and said to get back on it. I really don't want to be on it, it definitely didn't make me feel better other than for PMS --- and the flu-like syndrome and bodyaches from it I don't need on top of everything else. Has anyone here had experience with withdrawals from Prozac or other similar drugs and than going back on it while possible going through withdrawal. Due to her urging, I'm back on 1 ml for the last two days, but my irregular heart beat and racing heart as I'm waking up is continiuing. I'm scared as I don't want to have a heart attack from it but it's really messed up my abnormal heart rate more than usual and I'm sure now looking back, adding Metroprolol and also discontinuing at the same time wasn't the most brilliant thing to do, but I DIDN'T REALIZE what was going on--- and this going back on it while I might be having withdrawals is confusing to me - how can that be a good idea? Thanks for any input/information Tammy

Does anyone notice severe nausea from sleeping meds? I'm only getting about 3 hours a night from them, better than nothing, but the nausea is terrible. Can't eat anything, -Tammy

I know what you mean about murphy's law. I get the same very irregular pattern and for the life of me,, each time I've done a monitor or ekg, I'm not having the problem at the time. My cardia thinks it must just be plain old sinus tachycardia, but they have never caught it on a monitor, so I don't know how he can be sure of that.

I haven't been able to tolerate beta blockers for the life of me, but with my hr/ and tachycardia spells, I need something to control them. I keep trying different ones hoping to find one that I can tolerate but either they wipe me out completely and leave me very short of breath, or I get severe insomnia, like now. I just don't know what to do. I really don't think I can stay on it any longer due to no sleep, otherwise, it's a great med it seems. - Tammy

OH my. I just really need support right now. I'm continuing to try Metoprolol but I can't sleep even a wink with it. I'm shaking with chills and each time I start to fall asleep, I'm jolted awake, this continued all night long. I feel like I've got the flu and not sure if I'm going to even make it through the day. I was so hoping this beta blocker would work for me, but I feel like it's killing me. It seems to keep my heart rate where it needs to be, so I am sad that this just isn't one my body can tolerate either. My whole system is just freaking out and I'm in tears. I'm trying to tell myself I'll get through this, but if I don't get any sleep, the worse it will keep getting. How can I get through this without discontinuing the medication? I have my two year old daughter to take care of and I don't think I can today, I'm just so sick. Thanks for listening - Tammy

Any ideas as to why tachycardia/irregular heart rhythm would occur after some sort of activities? Since heart racing issues are a large part of my problems, sometimes when they occur doesn't always make sense to me. Such as once I sit down to rest after doing a little bit around the house and I start feeling weak, I'll sit and rest and in just a few minutes my heart will take off and go crazy, sometimes it seems irregular in rhythm also. I know, I've had a million questions about tachy this week, but it's just taken such a toll on me lately, I want to learn as much as I can about it overall in hopes of helping myself cope with them best. - Tammy

Thanks for the input. I did divide the dose in half and took a half before bed time. The dose at bedtime kicked in later on, but the dose from the morning was still in my system so I couldn't fall asleep and than as the night time dose kicked in, it really made the insomnia set in. Any other ideas? Thanks

Hi everybody! Well once again, I'm having a horrible time with this new beta blocker, Metoprolol. I have severe insomnia, like no sleep, which makes all my other symptoms flare badly. I don't think I'll be able to keep taking it, yet it seemed to really help my tachycardia for the one day I took it. How in the world can I give it a chance if I can't sleep at all when I take it. I'm just not sure what to do as I'm afraid my doctor won't feel I'm giving it a chance, but I deperately need some sleep. I took a very small dose, so not possible to take a lower dose either. I tried to take a tylenol PM and usually that helps a lot, but it didn't even take any effect last night Any advice? - Tammy

Just another quick question about tachy spells. Whenever you get a tachy spell, do you usually get extrememly weak from them, like the shaky weak, too weak to walk kind of thing? Just making sure this is a normal thing with tachycardia (Not talking about the adrenaline surges as I know they make us all weak too, but just the in general tachy spells that come on from standing too long, etc.) - Tammy

Since I continue to have horrible adrenaline rushes/storms and also sudden onset of tachycardia spells with any form of exertion - standing in one spot, putting away laundry, going to church, walking, sometimes just sitting, when I get upset, etc. , I continue to try and find something that will help. Usually all the beta blockers I've tried make me horribly weak and extra dizzy/lightheaded. I've tried Inderal, Atenolol, Pindolol, Diltiazem and so far they all have really yucky side effects that make me need to end taking them after a few months/year. Anyone else find that Metoprolol works for them? I just really want to find something to help, but feeling hopeless at the same time. - Thanks - Tammy

Hi! Thanks for the support! It means so much They did check my electrolytes and it all came out normal, so must be just the fun POTS acting up. It just seems like it never ends. It seems like everyday I deal with some sort of symptoms that make me question how long I'll be on this earth - and I know none of us know the time and place, but I'm just being constantly reminded of my mortally. Even though I see God helping me through it, I still feel hopeless and frustrated with it. I know you all understand and I just wish we could all just feel better and live an active life rather than on the couch everyday, all day, and being too weak and too sick to even enjoy life. - Tammy

Hello! This tachycardia with extreme weakness is really getting in the way of getting out of my house. Today I ended up in our local Emergency Clinic and once again, other than being told my heart rate was very fast but the eKg looked okay, I felt like an idiot for stopping in. They were all very nice as things were very slow so they had the time to check me out, but they really feel my adrenal glands must be having problems also since my skin has hyperpigmentation areas (whatever that is???) and this physician I saw today noticed them. My poor husband and two year old has to leave church with me as the spell came on during services and then we rushed over to the clinic since it's just down the road, but didn't really help other than reafirm that I wasn't having an arrythmia episode or whatever. Just so frustrating and feeling like I can't even go to service on Sunday anymore and my faith is so important to me, makes me sad. Thanks for letting me vent - Tammy

For some reason, I never really feel hungry. Does anyone else have this difficulty? I tend to only eat just because I know I should. Even my intense sugar cravings that I use to get have left. - Tammy

Oh my, yes! I get so ill immediately after sex, it's so frustrating. It's like a stomach flu hits me... weakness, chills, heart racing (and not the good kind like during the big "O"!) and feels like adrenaline is surging through my body and it scares me as I feel like I'm dying. The past year I get sick just from just laying there without the big "O" for some reason, so it's not just the intense stimuli that is causing all the problems, it doesn't really make sense always. It also usually takes 2 or 3 days before my body settles down. If my husband's apendage wouldn't "fall off" without sex, I'd definitely consider it one of the activities that my body just can't handle any more. But I always tease my husband that if things ever get good enough for me to be back in commission, he's in for many long nights to make up for lost time - Tammy

Hoping things get a little better soon! Sending you a hug and a prayer - Tammy

We know our bodies best and if the medication is making us feel worse - unless it's a life threatening situation, there's little point to continuing on it. Tachycardia can be a side effect of Zantac, so it's not your imagination. More typically bradiacardia can result but everyone is unique to it. Hope they find something or a combination of meds that will help you. - Tammy

Hello! I was just wondering for those of you who have taken florinef, does it typically cause weakness (more so than the normal weakness with POTS)? I've been on Florinef for about 3 weeks now and it seems I'm getting weaker by the day. I also seem to be going pee a lot more than usual, so quessing that's a side effect to. It has seemed to of helped my "yuckies" - general unwell feeling overall, but not to where I'm feeling functionalable yet. - Tammy

EKG and ECHOcardiogram was the first two tests they did. Then after months of my symptoms not clearing up, the cardiologist did a Tilt Table Test which was negative but he was very suspicious of POTS so have a technical diagnosis of POTS but at first was diagnosed with IST but found my resting heart rate is low so that diagnosis doesn't match. But during ER visits I've had they usually just have done blood work to rule out heart enzymes or something like that. - Tammy