erikainorlando

So...is Mayo better than Vanderbilt? And for those of you who have gone, what have they done...what has seemd to work? I think I may be a little better but simply because I have learned more of how to live with this illness. Thanks, Erika

My hr went thru the roof on Cymbalta...SSRI's are better for me. Erika

Well...today hr back to 126 on awakening...so I took my bb. But something must be readjusting as my hr is about 65 on my bb and I don't feel good at all (usually on bb hr is about 100-110). I am hopeful tht my body is readjusting (re-regulating )... Erika

My O2 also used to get very low. The did the arterial gases test and mine was 77. They thought I had a pulmonary obstruction...but then we all realized that my hr was 150+ all the time I tried to move around. Apparently the lungs can't keep up with the heart when the hr is that high. SO...yes, I had a lot of O2 administered at differnet times. Now, as we have gotten my hr more under control my O2 is much better. Honestly as time has gone on my O2 really is better...altho it can still dip at the end of the day or if I have been moving around a lot. I can't take Florinef...terrible headaches...just not tolerable. Anyway..there is my experience... Erika

OK...you know Saturday was a good day for me..yesterday wasn't bad either...hr still high but felt better. Now today I woke up and my hr was 78. Never before anywhere below 115-120 for months. So now I ask; I started taking Zoloft 100mg about 3 weeks ago. Coul,d tis be it? I have done nothing else different... Back in April I had taken Prozac....I immediately had goood results. HR was normal for a couple weeks then I guess my body got used to it and the HR went back to 140. So we stopped the prozac...hr stayed the same. I have read anti-depressents can try to re-regulate the autonomic nervous system. I definately don't feel cured (weak and still kind of sweating and off) but better......anyone have luck with anti-depressents? Thanks, Erika

I am really having a good day!! I am grateful for these days when I don't feel "like I am gonna die". I have not felt this good for this long in a long long time. So I am happy. But I need to ask: am I the only one who feels so ill all the time? Weak, sick, can't breathe well, hit by a bus...etc. even during my good hours I am stilll so obviously not well. But I read about folks on here who can do all sorts of things and I wonder how many are soo soo ill wilth this? Just checking.. Erika

Jana - Weel my dear...hmmmm. I don't really relate as I don't get real tired...I just get ill and need to lay flat. I don't really rest/sleep well and feel like I need to sleep much at all. I just can't be up moving around!! But I can appreciate that limit of your life believe me. I am usually down from about 2 - 6 everyday but if I lay down and drink and don't move much I can't be up and moving some at night. Anyway...just differnet limits...you may want to look again at your meds. Napping may help as you indicated. After Guillain Barre I could not stay awake in the afternoons at all...but lo and behold...it got better....but it took years. and there were times it was worse than others as well. Good luck. Erika

Bella - I would love to try IVIG. I had this done many years ago for Guillain Barre. I don't function normally at all with my POTS. How many hours a day can you be up and functioning? When do they consider it worth it to try it? I have very little life. I just tried to clean my shower a little and am so ill...eI am in bed. Thanks, Erika

I guess my question is; Are my nerves damaged and trying to heal or is the autoimmune componenet continually attcking the nerves...thsu rendering them unable to heal until the autoimmune componenet stops... Does this make sense? Thanks, Erika

I recently read a post from someone who said they "strengthened" their blood vessels and cured their POTS. My question is if you have autoimmune related POTS is your body attcking the nerves the vasoconstrict so that once the autoimmune response stops the nerves can start to heal or are the nerves just damaged and need to heal? I am just thinking that the autoimmune response means that the body is fighting itself....am I looking at this wrong? Please help.... Erika

Intuit - Honestly, I have to add that the dead silence from me is because I don't understand what you are saying. I am a computer programmer that worked towards a masters in couseling psych... I am not sure why but I am missing hte critical pointers you are referring to....I have had two autoimmune disorders now and would love to understand. Can you explain? Thank you. Erika

Wow. I am so greateful for you and your success. It is an awful illness and so misunderstood. It gives us all such great hope and inpiration to hear success stories. Can I ask if you fainted repeatedly or just got so "ill" like me. I never really faint but I feel just horrid after any activity or standidng....chest pain...I am very grateful I don't faint...but I "have to" sit...my body just makes it known!! Erika

Boy - I am in the category with Dawg Tired. I would never be able to hike. I walk around the neighborhood on a good day and early in the day...otherwise I just wouldn't be be able to. I can't do anything for more than 1-2 hours so I can't imagine exercising for that length of time. I have never tried Xanax for POTS. Pain meds and Beta Blockers are the best for me so far. But mainly the beta blockers make it so I am walk around the block. Before beta blockers I couldn't stand and dry my hair. I geet dizzy but my main complaint is feelinso sick...and mostly after activity. Although I barely ever feel completely well. Good luck. Erika

Yes...I did it and this was finally how we saw my hr getting close to 200. They saw a lot of other irregularities as well but all related to activity...I think it can only help...get as much info about yourself and condition...why not...unless it is very expensive and you have no insurance. Erika

Yes...I am wondering too if post-viral POTS have more of a tendency for exercise to help. I can definately do more than I used to...and the more I do the more "I can do...I am a post-viral case. I do remember the docotrs before diagnosing me talking about deconditioning. I laughed because I had been playing tennis frequently before getting POTS. I am wondering if there really is something to the retraining of the nervous system. I do have to say...I get very sick from activity tho...I cleaned the floor this afternoon and then got soooo sick I couldn't function...anyone relate?? Anyway....I love hearing about anything that cold osssibly help.....I am sick of bing sick....!!!!!!! Thanks all and Happy Halloweern. Erika

Just quickly...I never go to the ER. I never call my doctors either. Before I was diagnosed I went to the ER frequently and was always admitted...but they could never really help. I usually "sit it out". I don't usually get scared by my symptoms....and I know what helps like laying down and drinking alot. Pain meds help too when it is real bad...beta blockers help me... Good luck. I just hate the hospital. Erika

I think I see a common thread for a lot of people who do alittle better with this. It looks like exercise is a real help in overcoming dysautonomia (POTS). All you brilliant minds out there...is this true? And if it seems to be why is this? Thanks!! Erika

Perhaps they can just give you some pain meds in the meantime...I just hate being in pain and am so much of the time. This is a lonely tiring road at times. So frustrating to be so ill with hardly any answers. This forum has literally saved my sanity (altho some may disagree). I feel for you and want you to know your persistence and courage help me so much. Hang in there...we all are with you in spirit. Erika

I have taken neurontin since 2001 for nerve damage from Guillain Barre Syndrome. I couldn't live without it. I got pregnant a few years back and they told me I couldn't take it when pregnant....I thought I would go crazy. I was so sick and riddled with pain...I have to say neurontin works better than narcotics for me. Good luck. Erika

Thank you so much. I appreciate hearing success stories. I love hearing what works...if only for tht person...but I will try it for sure as I would love to be "normal" again. I am just so glad you are getting better. I do think the positive attitude is a great benefit. Balance and common sense seem to be key. I try to think positvely and I take beta blockers so I can get up and down the stairs...at this point no matter how positive I am I can't control my heart rate. Years ago I had a terrible illness. I got well (or weller)...I also know some who had it and didn't. People ask me why I got well...I say I got lucky. And I believe it.

Oh Jana, If I could afford it I would do it!! I hae to have my daughter help me. There is no way I could scrub the tub etc. I have a hard time with laundry too as I can't bend and get the clothes...oh and I can't put them in the dryer well either!! Oh boy...hmmmmm...amazing we are not living in squaller. AND they always do a better job than me too. I really look at it this way. If someone helps with the house I can maybe go to the store...or take a walk...but if I clean...I am ill afterwards. Erika

Hi all, My knowledge base!! I sometimes do have terrible pain. Sometimes my skin even burns and my joints all hurt. It has definately been tied into activity level. But I have been waking up early and I can't get back to sleep becasue of the pain. Terrible pain. This morning i took 1/2 pain pill which I hate to do because I don't like to take that stuff too much. Once I get up it eases up...but what is this...? When I was trying to work, I hurt everywhere in the morning. Is this autonomic neuropathy? It is more than my usual "I have been hit by the bus syndrome"/) Thanks!! Erika

You hang in there. This is a very disabling misunderstood illness and it is frustrating for those who love us along with ourselves. I am not really good at "appearances"....I kind of telll it like it is but my family does support me....to some extent...whenever I mention being ill by mom syas she gets too nervous and then starts with why aren't the doctors helping me...oh boy Anyway..some days I am more exceptng and some days stink. My kids really help. But I have learned that if I don't validate what I feel and am going through then neither does anyone else. I don't like to be around people who don't support me. So many times I don't call my mom. OK so I have no advice really...but I do understand. Erika

I love you Futurehope said about pretending. And it is my pride...and I guess I dometimes want to hide it from mywelf too. I also know the tendency of others is to say..."oh, let's just wait until you are feeling better"...but you all know I just don't usually feel well. Right now (at this moment) I am feeling ok...but this last for only a few hours a day...and the hours I feel ok are not consistent!! No need to explaint o you all....I know you get it!! I am used to being able to force myself to do just about anything...but this one I can't force....try as I might..... Thanks for all your kinds words and support. Erika

Hi susan. Hang in there. We are all here for you. It is difficult. I find that I get very snapppy someitmes...very irritable. It is difficult road sometimes. Try to post to stay connected with some of us. There is great suppport here. You have improved so you know there is hope. All the best... Erika