erikainorlando

Thanks guys...

I am back to the normal 130+ standing 70 - sitting today....altho I still feel horrible..but perhaps my standard horrible or maybe a little worse. but I was so short of breath with the lower heart rate.. I will keep an eye on it. We did a 48 hour holter a couple of months ago and saw a litttle barycardia (nothing major) but mostly the tachycardia...along with PVC's and atrial tachycardia...my heart reads a mess all in all...but nothing fixable unfortunately.

Thanks all...Erika

Hi all,

I am so hurting the last couple of days...so tired of feeling horrible. I have been researching any connection between the Guillain Barre I had in 2001 and this onset of POTS in 2008. It looks like there is a nicotnic acetylchonline receptor antibody that may be present in some POTS cases and also in Guillain Barre. Has anyone been tested for this antibody? It looks like there may be treatment options like IVIG (had it with Guillain Barre...didn't really help tho).

Does anyone have any more information on this antibody. No one, including my neurologist that has seen me since Guillain Barre has even hinted at this possible antibody being evident and perhaps the cause of my POTS. Furthermore, would the antibody still be evident in my blood work even tho I have had POTs for 1 1/2 years now?

For those of you who are not familiar with Guillain Barre, it is an autoimmune neurological disorder in which the peripherial nervous system is attacked rendering the patient paralyzed. Its onset for me followed a virus...much like preceding POTS. I am not saying that Guillain Barre caused POTS...I am saying my body seem to attack the nervous system in some sort of abnormal manner in an autoimmune response.

I just see links that are ont being followed here by either of my main doctors. I see an EP for my POTS diagnosis...and my neurologist seems to think POTS is a cardiac disorder.

I know there are many out there with lots of knowledge...any help would be great.

Thanks!!

Erika

Never be afraid to report any medical professional that is either rude or not acting in your best interest. I have reported many a nurse...and it very frustrating at times. But you know it is really just ignorance. Many many medical folks have never even heard of it.

I recently read thru my medical notes from a trip to the ER last year...my GP did admit me but made me sound like a nut..I am going to send her information on POTS so the next person doesn't have to go thru this.

I would really like to raise awareness. I am not sure how..any ideas?

Erika

So this morning at 5:00 am I woke up pain in my back (like in the back of my heart)..felt so shaky and ill...

I was going to take my toprol early but when I took my hr it was likke 60. All day it has remained between 55 and 65.....standing it is still pretty low..like 80 - 85. But I feel awful. I feel like when my hr is very high...short of breath and very unwell.

Does anyone here experience this ever? I have a very high heart rate almost every day for the last 1 1/2 years..but today this..and I feel more beat up then usual..any ideas?

Thanks you all...

Erika

Ditto to all. Can't put into words how nice it is to hae all your support. Erika

I personally would ask for a wheelchair to get around campus if you don't already have one. I would also ask if I could sit with my feet up and in a silightly reclined position. (I swear I could rule the world if I could jjust recline!!) Furthermore...I usually can only be learning or committed to doing anything with a brain for a few hours a day..I would have to adjust my course load. AND most importantly I wouold have to take it easy...stress and me don't mix. Slowly and calmly are words to live by for this POTS girl.

Good luck.

I have a 16 year old daughter but I want to say nothing applies because she is well. Now I will go on...I am kind of a neat freak. BUT I don't/can't do what I used to and sometimes it is really impossible to get off the couch. So to do something at a certain time can be difficult let alone impossible.

BUT I have some time during the day I can do some stuff..I would imagine he does too. He has to prioritize his time. If he is operating at 60% perhaps he has only a few hours a day he can do things...but certainly 20 minutes of organizing his room is not too much to ask. I would just let him decide when he feels well enough to do it.....but it has to be done by X o'clock.

Yyou will be helping him...he probably will have to do things in life, regardless of if he is sick or not.

I know it is hard to discipline at times...I hate to be the "meany" but we are giving them a gift. I have seen parents spoil their children because they are mentallly retarded or have other handicaps...but it is never beneficial. Being a parent is a hard job. You are doing a great job at it.

Erika

Yes. My holter monitor showed a very high heart rate frequently. So much so that they called me back immeditately and told me to go the EP right away...it helped a lot!!! It had been the only test that began to show how bad I felt!

Erika

Haven't had an EP study yet, but can certainly relate to your being so very disappointed when YET AGAIN they weren't able to find "a cause" or do anything to help you. I've shed many tears of frustrations when the doctors haven't been able to explain my symtoms and disability. As others have mentioned, it may be a blessing in disguise, but it's awfully hard to see that right now when you had your heart set on a successful outcome. Sure thinking of you and hoping tomorrow will be a better day for you.

That is exactly it!! Thank you so much. IYes...it is tht I was hopeful that he could at least cure the atrial tachycardia..something ...anything.. I could care less about the root case really....I just wanted someone to be able to fix me...I was almost hoping the atrial tachycardia was the problem...then they can FIX it!!!

Furthermore, it is so invalidating when they say "can't find anything to ablate"....makes me feel guilty for complaining. Even all my friends say "why can't they help you?" It is horrible when they can't fix you and then your friends and family kind of look at your cross-eyed...like it it is fixable then it was valid..otherwise there is nothing wrong..just a nutcase. ...only POTS...where we feel so ill and hardly anyone gets it. only you all for whom I am deeply grateful!

Erika

Ihad heard horrible things about the TTT but I was so sick I acctually welcomedany test that might indicate some definative answers...anything other than we don't know what is wrong!!

i didn't have any meds. I was layed down...took my hr (it was around 85). I was put upright and my hr went to 155 in about 20 seconds. Wewatched it remain that way for about 30 minutes...I started talking and watched it go higher..Doctor said "well...as I thought in my office...it is POTS".."drink a lot take beta blockers and eat SALT".

That was it..easy

Erika

I went in yesterday for an EP study and possible ablation as my holter monitor showed atrial tachycardia along with PVC's and my basic POTS tachycardia.

I hemmed and hawed about going in for the ablation as I was concerned it would make it worse. My doctor who is very knoweledgable about POTS said he thought a couple things were going on and he might be able to fix it. I was thrilled.

So...with all the hope of a new day I went in yesterday. When I awoke they said "there was nothing to ablate". I cried and cried...I wanted there to be something to ablate and fix me! Furhtermore, how can 2 different holter monitors show SVT and find nothing in the EP Study?

How many have had an EP Study? With POTS, should it show abnormalities? The feeling like there is "nothing wrong" again is so frustrating. I am broken hearted, embarrassed, and disappointed. I wanted to be fixed...and they couldn't find it to fix it...

Even my boss was hpoing this would be the answer...my kids were hoping and I was hoping...

I just wanted to see how many of you all have gone throught his and is it normal for us to not have it showup on the EP study...bla bla bla bla bla...

Thanks!!!

Erika

I am not sure but I really wanted to add that it can be very difficult and I support you!! My son was 2 when I got Guillain-Barre and couldn't even lift him up. I was a fixture on the couch ( alot like now too)...but we all got thru it..I used to try to play board games...watched a lot of Bareny. BellaMia had a lot of good ideas..I am just relating and supporting you!

Erika

If my head hurt that like with no relief I would go to the ER. I am not kidding. Headaches that do not go away are many times problems and if nothing else at least the doctor could give you something to take the pain away and let you sleep.

Good luck.

Erika

Beta Blockers have been my friend...that is for sure. I am going in for an EP study and possible ablation on Monday so they want me off all beta blockers for a few days before hand. I forgot how awful I feel off beta blockers.

no fun! And I am severly debilitated off beta blockers..Can't do anything.

So I just wanted to complain for a minute..there it is..

Happy New Year All!!!

Erika

I havve been feeling better as well. Although after bout 5 hours of being upright I am ILL! Way ill! But these days I count on the fact that I will need to get flat in the afternoon...I don't push too much...I don't do much of what I don't want to do. I try to be happy.

I lower my expectations of myself. I think the cooler weather has helped some too.

I have tons of PVC's. I think it is just from my heart rate being so irregular...all my POTS stuff. I don't worry about it much. My EPwants to do an ablation for my atrial tachycardia...but he says he isn't even going to worry about the PVC's. Mine stop after I rest for a while.

Good luck.

Erika

I am not going to be a big help here either but what happened during the TTT? What happened to your hr? Certainly sounds like some orthostatic intolerence...if not full blown POTS. I am sure there are other forms of dysautonomia as well..I have terrible problems with the temperature as well. It is a horrible illness but bb's help me a lot. I have learned to modify my life too...which really helps. I just can't do what I used to..slowly is the key word to my life!! I go very slowly...easy...rest often..

But you need to get the docs on board. Just keep pushing until you get answers. You sound like a lot of us here.

Good luck.

Erika

I am with you Brye...the stairs are a killer! I am constantly asking my kids to get this or that upstairs or downstairs...at my worst I couldn't even make it up the stairs!

Erika

Hmmm...what am I missing? I don't think this is a terrible article and this isn't the first time I read it. It says tht some respond and recover..some don't..which seems to be what I have found true in my limited research...furthermore, treatment is difficult and varies. What am I missing?

Thanks,

Erika

Yes, I think that the not knowing part is the main struggle for most of us. It was so terribly frustrating...furthermore I couldn't figure it out. Sometimes I would be kind of ok...then without warning I would be so ill and have to sit. Now I know I had been upright too long but before I knew what was going on I was lost!

Now I can manage it so much better...I have learned the triggers and what helps...

So it is Christmas..

I am doing my resting period so I can be able to socialize a little this evening with friends. I am so choked up and filled with different feelings..not sure where to turn other than you all.

Last Christmas Eve I was leaving the hospital...again. They didn't know what was wrong other than I was very ill. I couldn't stand or get around...my boyfriend at the time had left me in the hospital to go to Utah (he was scheduled to work altho I would think one could have rescheduled). I didn't have even a ride home from the hospital. It was awful. Thank God my boss had sent me a lasagna or we wouldn'thave had Christmas dinner.

It has been a tough year. Many adjustments. Sometimes I am overcome at how alone I feel...most times I just try to be grateful but Iam truley alone other than my kids. I broke up with that boyfriend who was too involved with his life to worry all that much about mine..but I still feel awful, can't believe I wasted all that time and heart on someone who would pick skiing over me and my kids in such a desperate time. I get mad and want it not to hurt anymore but it still does. My mother is so self-absorbed that she doesn't even understand how ill I have been or how hard it is over here. She is coming for Christmas...I will try to be nice. My step-mom has stopped speaking to me after getting ill...she thinks I have been overly dramatic...

So I thank God it is a different year than last....it is much better. It will be better still. It will change and is changing...I guess it is just a process of letting go. And a lesson that many times those you think will be there really are unable...people sometimes scatter when we get ill. On the flip side I have you all and my kids. I have hope and my spirit.

Merry Christmas Everyone...just wanted to get that out..my heart is heavy today

Erika

YES I get it!! Kudos to you for reaching out here for support!! Sometimes I think cancer and other terrible illnesses are perhpas easier to deal with as there is an end in sight!! And of course I understand their suffering as well...and am in no way making light of it.

I have even had friends say to me that at least with this autoimmiune illness (I had Guillain Bartre and was totally paralyzed for months) I am not as sick. While I really hate comoparing pain...as pain and suffering is pain and sufferring..I mention to them that at least GBS came and hit and left...it was totally frgithening, terrible, woorse than terrible..but I had tons of support from everyone..no one said it was in my head...no one didn't admire my strength for living thru another day...but not so with this illness.

I love what Firewatcher said about the place of grace.. I pray a lot..so I would probably ask god to help me find the strength in my heart to simply be supportive of this other ill person. It is hard to be discounted especially when we feel so ill..but we have to be the person that remembers how to support ourselves as many simply won't get it. Still I don't spend a lot of time with people who invalidate me and my experiences...

We are all here for you...Erika

I don't suffer from nausea..thank God. However, I just wanted to add that I am NOT cooking!!No way!! Someone else will cook or we will get something from "Honey Baked Ham"....

I suggest you take it easy on yourself this holiday season...be creative and do only what you are comfortable with...you deserve to have an enjoyable holiday season..go slow..it seems to help.

Erika

mmm... All i can say is that if im standing for too long im the crabbiest person in the world - many times Ive had to apologise to people later...

I am the exact same!! Female crab version but the crab no less!!

I havew a great EP...but I had to go thru a couple of them before I found a good one.

Although I think we need to be mindful that doctors are sometimes overwhelmed. Perhpas he was really having a bad day. I would probably try to talk with him again. Then if I didn't get a good feeling I would move on and fast. BUT try not to let him upset you...mostly becasue you are the one who pays the price!!

Good luck.

Erika