erikainorlando

Is there really research that suggests that only a small percentage are so disabled that they can't work?? I am happy when I can go run errands for a couple of hours...I just wen tout and got my hair done and I am sick sick sick....................hmmmm But I saw my electrophysiologist today and he said that he didn't believe that my age (46) was too much of a variable. He really gave me hope that this will improve. Although it has been a year since I got sick now and I am not sure I am that much better. Beta blockers help a lot...but I still get so sick from activity. Erika

Good Girl!! I am so glad you can work!! That is such a blessing...I still can't manage that one..I am sure it would help my mind and spirit. Just keep forging ahead. You will be amzed with what God has in store for you. My boyfriend(ex at this point) sold his house and was so uncertain of what he was doing.(going to Utah for 5 months etc.) ..certianly didn't include me in any plans ...so I told him I was tired of sitting on the bench and I let him go. I just watned to matter to him...very painful for me. No word from him for 2 weeks now. I am letting go too..POTS is hard enough but we need people who love us and support us........... I am proud of you...we will get strongerr...and when we do emotionally and spirituallly our physical health will follow........ Keep us posted. Erika

I had a flu last Sept. Not a bad flu just a flu. I never felt right after that. I felt often that I couldn't breathe but was afraid to say that because they all already thought it was anxiety!! I stayed out of work for a few months and when I tried to go back I kept landing in the hospital. No one got it...then one day someone took my hr while I was standing it was 150. Holter monitor revealed more problems...sent me immediatly to an EP. EP diagnosed it within 5 minutes!! Did a TTT just to confirm it........but it took months of PCP's telling me I was nuts..I was so suicidal and homicidal by the time I was finally diagnosed...boy what a time of it I had. A very bad time. But that EP...wow..he asked me a few questions and said "yes..I've seen this before..your heart got sick..it is an auto-immune thing". I could have kissed him!! Erika

Thanks Guys! Any luck with Zoloft helping with POTS symptoms? I took it for post-partum depression years ago now that I think of it and didn't havew too many side effects from that. Thanks!! Erika

Hi Guys, I have had some personal issues lately that have added to my stress so that my symptoms are kind of bad lately. I wanted to try an anti-depressent again as I know they sometimes help with POTS and maybe evenmy basic temperment these days !!. Here is what I have done with and without success... Prozac - tried 10 mg for a while...had success with POTS symptoms...felt much better then my body got used to it and symptoms returned with a vengence. So we up'd it to 20 mg...no luck...diahrea...couldn't handle it. Cymbalta - forget it...hr sky-rocketed. Way too sick... Before I got sick I took lexapro when I was depressed some but it really had some sexual side effects....altho...sex is not big on my list anyway when my POTS symptoms are so bad!! So...what do you all think..you are my best resource..... Thanks!! Erikka

I never post on this forum but had to respond when I read this. Before I ever got sick I was a single mom with two small kids. My son had asthma. Then he got pneumonia. Was in the hopital blba bla bla...and my daughter had head lice....and then I got head lice...I was trying to work as well. Yolu get the picture. Total stress!! So one morning I gave him his antibiotic except that it wasn't...it was the barbituate they had prescribed many months prior to his colic..and I gave him the wrong amount (the amount I had to give of the antibiotic). As soon as I gave it to him I knew what I had done!! Hysterical I called the hospital..anyway he survived (slept for quite a while..but survived). I did a few wacky things like that in those days. I was just so stressed. In fact I left the head lice mediciine on my daughters head for an incredibly long period of time thinking I would kill them all (but the warning on the bottle says can cause neurological problems if misused but I had over looked that!). Stress is hard...brain fog is hard..but you do sound like a loving wonderful mother...dont' be so hard on yourself. We all make mistakes. There are no perfect mothers. Erika

Tammy - Boy, you are not alone. I can't walk and walk..some days I can walk some but some days I am really bad off. I am always pretty well sick by 2:00 pm...sometimes earlier. can't really do a thing but recline. I don't really ever feel "well" and if I feel ok it is a miracle!! I get so happy. I have rested all afternoon so I can try to go to my daughter's cheerleading this evening. I may not make it...but for me it is activity based. It is like I have an energy jar...it doesn't matter how I use it, I only have so much. Then I will have my sick spell and my body will have to lay down...can't even talk. I was thinking of you describing your feeling so weak and ill in one of your last posts and I thought how perfectly that describes my life. I think that I have been sick a year now and feel so frustrated. But you are not alone. Erika

YES!! I know what you mean. AND I am much older than you (46) but it doesn't feel that much easier here either. I had already fought back from the dead in 2001 after being on life support for months etc. Now I am fighting again. I am gettin' tired of coming from behind if you know what I mean!! But then we try...we adapt...we change and grow and realize that everyone has limitations. Everyone has to redefine frm time to time. i know this is really stupid and may not help you but when I am so frustrated because I can't do my career anymore etc. (after doing a lot of schooling to get there)..I try to think of what I can do. I am trying to do a little towards my masters training..although I may never use it...it sure helps me mentally. I think of the folks who have had their faces dis-sheveld from an auto accident or those who find they have cancer and won't be here next spring. It sounds very polly-anna and I am not for sure but it can help me feel better. Otherwise I get so frustrated...feel like a victem and after long enough that deosn't really help. I think of a friend of mine who had Guillain Barre like me...he will live in a nursing home for the rest of his life as he still is so paraylzed. When I first got sick AGAIN I was so pissed that I was sick and compromised that I didn't care how sick anyone else was...JUST SO MAD .. but Iam trying to adjust...it is a process. Kudos to you for thinmking of what you can do...the happy person adjusts and bends... Good topic...good luck Erika

Thanks you all. My whole body hurts...I am so ill I can barely think of him because I am too focused on how sick I feel at the moment!! But rest assured...when I think of him with a potential cute little snow bunny on his arm who is well I cry lots!! Tammy - I am sure he would be my friend...even my boyfriend..but I just would reallly like someone who makes me feel like I am their world. Not just that I am lucky to have him hanging around...and when ski season hits or anything else he will be gone like the wind. I just had a moment of clarity where I began to think that if after 2 1/2 years he still isn't ready or sure of what he really wants with me..welll...I don't really want that. I want a consistent partner...don't have to be with me all the time but to be out of state for 5 months every year...no ring on my finger etc. well, count me out. BUT now I am overwhelmed and scared and sick...and feeling like he is better off without a sick girlfriend anyway. I have great kids...I am so glad I am not here alone. I slept last night... Thank God!! But I am very ill still today. My chest feels like there is a knife in it. But it will not be like this forever.

I was feeling so proud. I have been able to do more than usual. Then I broke up with my boyfriend and now I am so sick!!! BUT you have all heard me talk of my boyfriend whom has really been the only real help I've got with my children. He is a widow which has had it's own issues to be sure. We have been together 2 1/2 years. Neither of us are babies he is 57. He just sold his house here in Florida and is going to his ski house in Utah for the winter. I can manage without him...I do pretty good but I am so frustrated with his lack of commitment to me. He says he can work out there and loves me but just insn't ready...bla blab bla...you have heard it 100 times. I honestly think without the house here he will just end up moving there. I told him to just leave me alone please. Let me get on with my life. BUT I HAVE NO LIFE>>>>I HAVE TO SIT/LAY DOWN ETC> I HAVE POTS!!! AND TWO KIDS!! I am so heartbroken. I tried to breakup before this summer as at times it just becomes painfully evident that he doesn't want to settle down. I get upset. I can't sleep and I cry. SO I now feel soooooo sick. SO SICK!! HR won't go down. Then I think "what am I doing". No one else will want to start up with a 46 year old woman who is ill. Has a history of being ill (had Guillain Barre)...at least he would take me to the store...or the doctor. He was very loving but he just needs to do "his" thing. I am alone a lot with him...but now I am really alone. AND really sick. My dad is dead. My mom is old (72). I get so worried about how I can care for myself at my worst times... Now I am not sleeping. Even my skin hurts. My friends seem to think I am faking it or have just grown tired of hearing me... I was so afraid to leave my husband after the Guillain Barre for fear I'd get sick again ..and I am sick again. Sorry to sound like such a baby. I really thank god for you all..any words of love and encouragement would be great. Erika Just some love and support would be great.

I am way better at moving than standing still. I walk as well...if it is in the morning I can walk just about a mile. If I have been up for a while, I can't walk that far..I feel like I will faint and don't have control over my legs. I don't think it is the stamina for me as much as the beingupright that kills me. Depending on "when" I walk in relation to all other thingns makes such a difference for me!! But yes...standing is always a trick!! Erika

Sorry it took me so long to respond...very bad few days..I will add more in a later post. BUT yes, the doc said salt loading for sure. And then I drinnk a lot!! Thanks guys.. Erika

I like what Tammy said. I have never taken sleep medication before but I do now. I absolutaely can't function at all if I don't sleep well. I habe a hard time sleeping usually just due to a general uncomfortability (chest pain body aches). I don't abuse the sleep medication but for sure am willing to use it. Erika

Hi. I don't remember why drinking lots of fluids helps...?? Water doesn't seem to help as much as gatorade; water I pee out very quickly. But why does this help? Laying back, relaxing, going slow, AND lots of gatorade seems to aide so much (along with the beta blockers). but what is the physiological reason for fluids helping?? Thanks Erika

I am so sorry you had to go thru that. It is terrible somedays. I look like a pretty healthy 46 year old and no one understands when I have to say no I can't do something. I always put my feet up. Just sitting with them hanging down is still no good for me. When I attempts too much boy do I pay dearly afterwards!! When we can't we can't...that is it. I don't know who said it but there will be days we can...but when we can't...just ask for help. Your family sounds like they are not understanding your illness. You mentioned they canlled you the Queen...well we are in the Court here!! I just gave mmy 72 year old mom a booklet on invisible illness. She started crying and said she just didn't realize. You keep going girl!! Erika

I take Toprol XL. It helps with the hr. But I still fall apart like a mens warehouse suit if I am up and around too much. I would love to try an anti-depressent to perhaps even me out more. But I took prozac and really started crying more....not sure why so I stopped it. I tried the Cymbalta like I said but my hr got crazy. I just never feel relaxed. Which I can take but it is the really wired, amped feeling and I am easily agitated that I hate!!

I tgried Cymbalta once but my hr started really racing so I stopped it. I areally only tried one time but it was so bad...enough for me!!

Sometimes I am going thru my day not feeling too bad emotionally and then for no real good reason I get very agitated and almost anxious. Altho I have had anxiety attacks at different times of my life and this definately is not what this is. My body just seems over amped (really wound up)!! It isn't like my mind is stressed..it is like my body is stressed. Does this make sense? What are adenian surges and can this cause this? Thanks... Erika

I reallty think that my hr is highest when I am under stress. Although it doesn't seem too great close to my period either. But my hormones are probably subsiding some as I am getting older. I am 46..I am probably in perimenopause.

Most days I take my toprol xl and my hr is lowered. It will usually be controlled below 100. Today my hr is still around 120. This does happen occassionally sometimes, and I have tried to take a little more toprol. I worry about taking that much more toprol as my bp is so low. Does this ever happen to you all? Thanks. Erika

Boy..what a rotten thing for your friend to say. i have had some say some equallly stupid things. I had one friend say today that I should just try her natural stuff...and why was I so opposed to that...she would never take all the meds I take etc. I finally said..well...you have never been as ill as I have been. My boyfriend nad mom both said they would help some. I am hoping we have more coverage now that I had my melt down. BUT when even they see me "ok" for a few hours they think I am well. AND they know about POTS. But they forget that I am good for small amounts of time and then I fall hard. And when i am done..i am really done. We will see again this week.

Boy!! I don't know what I would do...hmmm disabiltiy? I am one of those that simply cna't work. I would have had to give up my house and everythihng first but I can't make it to work. I am attempting to take a class that requires I do a very small amount of work. I may not make this either. I seem to be able to do a few days (or hours of each day)...but after about 3 days I land in the hospital. My body doesn't work at all at that point. I owuld shake and not be able to walk more than 10 ft. (so frightening) along with all the other symptoms. I do'nt know if it is POTS at my age (I am 46) or just POTS...but I shake and can barely function if I try to do a normal day anywhere (even if I could push myself thru it). SO disability would probabluy be the best bet. OR have him work a 2nd job. Sometimes you ust cna't. And that is it!! Erika

Thanks for all the replies. I just now got a loaner laptop as mine bit the dust the other day - right after I posted. It never seems to rain until it pours, huh? I did ask some of the other parents to help...they really kind of blow me off. One dad said he would try to help after I went into detail of how sick I am. People just don't seem to want to believe that I can't do much. They see me for a few minutes and I don't look bad for a 46 year old woman with POTS!! But you all know that I will have to rest for hours after actiivty and if I go pick her up from cheer etc...that is all I can do for the day!! It is a drag that I always feel like they look at me and can't believe I am sick. Even myn own mother many times looks at me like I am exagdrating as I can go places and do things. So she thinks I am making it up. BUT I cna't do very much.and have to lay doown for several hours after minimal activity. I am sure you know what I mean. When I get overwhelmed amd cry it only makes it worse. Crying always makes me very very ill!! Thanks so much for the support guys. This is kind of a tough road. It is great to have you all to vent to and ask solutions from. Erika

Hi. I just need to ask...how does one do this? School just started again. My daughter is in high school and a cheerleader. My son wants to do baseball. I was supposed to get my daughter from practice and was doubled over with stomach cramps...no way I was going to get there. Thank God one of her friends took her home. BUT this is too hard. She has practice 2 times a week...and games at least once. I am a single mom....it would be hard even if I was well. She can't seem to get in a carpool and the other parents seem to think I am just not wanting to pitch in....but I can't..at least not at cccertain times...itis just impossible to get myself up and go get her and cook dinner and do homework...let alone everything else...I am so stressed..I want her to be able to do this..I just don't know what to do. She doesn't seem to understand that at times I can bqarely function. I feel so guilty. I yell at her for not trying to get in a carpool..then I feel more guilty for yelling. I really have no one to help. At leaast not consistently. I am tired of explaining not being able to do things. Someitmes I feel so overwhelmed at having to take care of two kids when I can barely take care of myself. Any ideas? Erika

Honestly...I am usually so sick after exercise, I can't begin to think of eating. I am rarely hungry in general tho.