erikainorlando

Hi. (help)!!

Saw my favorite cardiologist on Friday. He suggested Cymbalta. I had been taking 10mg of prozac and really had some relief with that but I decided to try the Cymbalta. I tapered off the prozac the last cople of days. I weigh 105 on a heavy day. He put me on 60mg. I think he said I might want to break it in half at first but of course I didn't.

I was my usual self today...took my toprol...hr staying between 90-105 on the toprol. I laid down after taking my first dose of Cymbalta. Woke up 2 hours later and hr is 125. Feel like I am speeding. I am sweating. Can't stand up (more than usual). Is this a reation to Cymbalta? Did I just take too much?

HR went down on the prozac almost immediately...maybe it is from the lack of prozac?

Any advice is soooo helpful.

Thanks.

Erika

I live in Florida....it is getting hot!! I love the beach normally but not this year!!! I go in my pool at nite if at all.

I wanted to see if anyone notices even when indoors if they are worse on hot/humid days? My daughter (15) has a theory that even when I am inside in air conditioning, I am much better on cooler, rainy days. I think she is right. Today was hot again and my HR was 140...Friday it was raining and cooler and my HR was 115.

Thanks!

Well...then that is it. I am so grateful for the knowledge here. I do also feel jittery and sometimes shake when it is all to much...then I sweat...not profusely but I was always one to be cold and relly not sweat much at all. Even if i turn the ac on cooler I am just cold but still sweating in spots then...

Thanks for the help!

Erika

Yes. I thinkn my appearance has changed.

I lost a lot of weight and am trying to gain it back. I also lost a lot of muscle tone. Legs are flabby now and so is my stomach. My body still just doesn't look well to me. I think most folks who know me can/could tell I have been very ill. I think I am starting to look a little more myself as I have gained back some weight.

And...on bad days my boyfriend says my eyes look almost dazed over. He can tell immediatly along with others close when I am really not feeling well at all.

Erika

I have noticed that in the early afternoon...pretty much as I am having to sit or lay down and am beginning to feel very ill I sweat. I don't really think it is even related that much to temperature. I think my body just gets so taxed from so little and I start to sweat and don't feel well at all. It is a lot like when I am sick with a flu type symptom. Not much sweating when I am more rested or have been laying down.

Anyone else? I know many of you don't sweat at all....not sure which is better.

Erika

I lost a lot of weight (10 lbs and I only weigh 108 at my heaviest). I was 97 lbs having problems walking, short of breath, hr 188 and they told me it was deconditioning. Once I started treatment for POTS I have slowly gained my weight back. I am back at 108.

I was tested for anemia tho; I had low RBC and NO iron. I also had a low hemoglobin/hemocrit. Is this POTS related? Does anyone have any info on this? I seemed to get worse with these blood counts (lower rbc etc) as my POTS symptoms got worse and were undiagnosed...

But I wanted to say my cardiologist gave me a hug today.....he doesn't have all the POTS/dys answers but is committed to helping and that is soooooooooooo great!!

Erika

Good topic!!

Honestly...people can be soooooo stupid. We are all here for you!! I think it is the old saying "blame the victim" because they don't know what else to do. My personal favorite is when folks say "what do you think the illness is trying to tell you?" as if I have a lesson to learn from God because I have been a bad bad girl.

On one of my hospital stays a nurses's aide told me it was anxiety. I told her to shut up and when she knew exactly what I felt she could speak. (wasn't doing well enough to be polite...)

I stay away from those folks and these days I only really talk to my kids, mom, boyfriend and the very few freinds that don't discount me.

Erika

Hi.

Had a very bad night...it is HOT here in Florida. I felt awful and slept on the floor...thinkning about going to the hospital...but I get thru it....you all have been in simiar situations.

But my 10 year old son woke up with a high fever this am (i am a single mom) then I walked into the coffee table and broke my toe. Haven't gone to dr for this yet but it is swollen and looks dislocated. SO my boyfriend who is very supportive says "wow...you have so much this morning...are you in terrible pain?" I said acctually the toe is NOTHING compared to the daily suffering I can go thru with the POTS. He was amazed. I don't think even he can understand how awful I feel many many times as it is not visable as a disloated toe.......

Thought you might appreciate this. We are a brave bunch!

Erika

Wow~~

That is so great!! Thanks for sharing that with us and giving some hope that there are better days for those of us not feeling so great.

Erika

Did yout doctor say this was related to POTS...? Thanks!!

Thank you!!!

I knew it was something new but I don't have anyone who explains dysauto. symptoms for me. I just have folks who try to manage the tachycardia. You all are such a great resource!

Hi.

I am sure someone has already asked this but I can't seem to find it in a search. I am always very thirsty.....drinking about 8 - 10 12 ounce glasses of water a day easy.....never have been this thirsy...I live in Florida and it is getting very hot. Dysautonimia related?

Any ideas....thanks erika

Thanks guys...

I am going to talk to my PCP regarding some further testing...it is not everyday...well...it is not bad bad everyday...

Hi.

Just have to ask...I have pain many many days. Aside from the chest pain...I since the beginning of this POTS thing I have had pain in my hands running up my wrist, my leg muscles and hip joints. I also have pain in my butt muscles and lower tail bone. Should I get tested for fibromyalgia? I have less pain when I am rested and haven't stood up or done very much. I think it "all" seems to get better when I lay down. I feel like I have been run over by a bus....sometimes everything in my body hurts along with all the chest discomfort.

Any input is appreciated!!

Erika

I put other.....after actiivty (and I can never tell when it has been too much)...I get soooo sick. Can't explain it...like my head will pop off..horrible sensation...also like skin crawling....just can't tolerate anything but laying down...and i can't seem to judge when this will be.

Yes...electrophysiologist. The folks that diagnosed my POTS. I didn't even know they existed b4 this whole experince!!!

Yes...electrophysiologist. The folks that diagnosed my POTS. I didn't even know they existed b4 this whole experince!!!

I hope you won't discount me as I am a relitive newcomer here but I have been disabled since 2001 after a severe bout with Guillain Barre. I really worked through a lot BUT when I watch my kids/boyfriend do things I can't it still frustrates me.

I never thought I would ever EVER have to deal with being sick again. Talk about pissed....very pissed. I have a masters in Psycology and I think...know it is just so normal to be angry. I like what EM said....I just need to feel it express it and then wait to get another emotion!!! I also think it is very impo to expres it!!

I have noticed that I am more angry when I feel physically very badly. Pain and sickness weakness...well they seem to make me even more pissed!!

You sound like you are grateful for the good things you have and at times angry for the crappy hand you have in this illness. This sounds like you arre grounded in reality to me!!! Thanks so much for expresing this with us..

Erika

I kept trying for months...but couldn't. If I worked a full day after 3 days I'd be unable to walk and landed in the hospital 4 times in 2 months. Then I tried part time but even tht was just too much. I loved my job and I sat all day...but I need to lay down frequently and for long stretchs...they frown on that in corporate america!!

Job now is trying to get better...

Melissa..

Yes...that is exactly it. My hr used to always and I mean ALWAYS go over 120 when I stood up (an increase of 30+ at least). Now...I am on toprol and an SSRI and my hr on occasion is obviously lower on them. And......my hr seems to be a little more managable these days..i don't have to take as much toprol and i have had a couple of days that when my hr was ok...even b4 I took the toprol (I was having one of these days when i was at the docs..). So...I don't want to complain to the doc if my hr seems more manageable.

I had a doc's appt with my neurologist today (she knows nothing of POTS but treats me for post Guillain Barre from 2001). She said....but Erika you look so good and better. Thank God my boyfriend was with me...he is very bold and said "She LOOKS ok today...but she is not ok. She has days she can barely function". Maybe I should try to bring him on all appts !

Thanks!!

Erika

Thank you all. I really appreciate your comments!

I do feel guilty that I am now better and wnat so much to be better. I had never had the expeinece that docvtors didn't believe what I was saying until this whole POTS thing. I feel like it is an "invalid" illness yet I am so incapacitated. It is so different.... I feel afraid even with this new doctor that he will give up on me or not believe me...even tho I have had the positive TTT etc. I am sure he is compasionate....i really think he is but I have had such awful experiences with doctors since I have had this.

I even have friends that look at me like "why aren't you getting better??". My boyfriend and kids are great (although I am sure they are frustrated at times too) but I hate needing them to help me...

I am very grateful for all you being there....erika

Hi.

I went to see my EP yesterday. He is new on the case but a very nice man. I saw him for the first time a month ago. I was having a great day yesterday - go figure. In the last month I have had about 2 days when my hr was pretty good (90-110) standing and yesterday was one of them. I said to him "Oh...yes...I think all in all I am doing better". He told me I looked great...and my hr didn't jump that much on standing...and he thinks I am getting better so he doesn't want to change the meds that much other than adding midrodine.

I wanted to kick myself going home. I probably am doing better than back in Feb...but I can't work. I can't do more than 2 - 3 hours of activity in a day. I have to rest before I can take a shower. I have to sit to dry my hair. Many times I can't even throw chicken in the oven for dinner. And evn tho yesterday was a good day...most of the time this is notthe case. I am a wreck. I don't know why I am so afraid to sound complaining to the doctor. I am probably afraid that he will say well I don't know how to help you or worse yet...I havfe your hr pretty controlled on the meds so why are you complaining...

Does anyone relate?

Thanks....

Erika

Wow!! That is great!!!

I guess we are just grateful when we feel good with this!!

Erika

Hi.

Good topic! I had a virus in Sept 08. Not a terible virus but it ws persistent and my doc kept giving me antibiotics. I also was under terrible stress at work and single mom of two active kids... I just never felt right after the virus. I kept going to docs... no real panic feelings (although the docs kept saying painc attack??) just felt like I couldn't breathe when I would stand for long periods of time or moved much. Always felt so sick after movement.

It wasn't until Jan and I couldn't walk 20 ft. without shaking and gasping for air that they determined my hr was off the chart.

By the way...this is the 2nd time for me tht my body has produced an abnormal response after a virus. I got Guillain Barre in 2001 after a similair virus.

Erika

Hi.

I was struck by your mother getting Guillain Barre. I had that back in 2001. Almost died...on a vent for 4 months... I recovered. I still have nerve damamge in my feet but am really better. Interestingly enough, I began working too hard....single mom, busy with boyfriend too....totally overdid it and this past fall I got a virus that turned into POTS.

For whatever reason...I have a very sensitive body.....doesn't like stress. Doesn't like virus's. I have to be very careful....probably like many of us here on this site.

PM me if I can be of any help in the situation with your mom. Guillain Barre is a very serious illness. (altho I am really not enjoying POTS too much either at the moment!!).

All the best.

Erika