erikainorlando

Crying in Orlando too! Thank you so much for your story.

I feel guilty all the time as my kids have seen me very ill now two times in their young lives. After my first bout with illness I thought I would never have to go thru anything like that again...and altho I can walk this time (albeit not far) I am sick again with POTS.

My kids always tell me that it counts so much that I still try so hard for them.....I still feel like a failure many days. But they tell me that I show them the true meaning of perseverance and determination. I mostly don't believe them....but then there is your story with your mom....Thank you. Erika

Thank you!

Would you expect that it would help even if you are not struggling wiht hypotension tho?

When they speack of acetocholine receptors....do they mean the acetocholine nicotonic receptors or are those different? Does anyone know? Just wondering as someone mentioned that POTS and Guillain Barre are both affected by these potentially...and perhaps this is something I should look into.

Sorry for sounding so confused with this but I am. Furthermore, I am sick..and would love to feel better!! I just am thinking there may be some connection in my body that has abnormal immune reponses (POTS and Guillain Barre).

Thanks again...any info is really appreciated

Erika

I took pyridostigmine when I was first diagnosed back in March. I really didn't notice any difference so i stopped taking it. I just read that itis usually helpful in post-viral or autoimmune pots. This is what I thought I had....am I to assume from the lack of benefit from this that my acetocholine levels are ok? Does this mean I don't have post viral POTS?

I have POTS but I do not appear to have any blood pressure problems.

Any input is real helpful here!! Thank you!!

Erika

Honestly, I used to drive my son to school in my pajamas. i would just put a sweatshirt over the top. I just coulnd't get it together to do anymore than that....but that was enough. Then I could get home and tryt o get myself together.

Erika

Waterbaby -

I believe there was a post within this topic where someone posted that she also feels best in the am...then as the day wears on she does less well and needs to lay down to get better...but I am paraphrasing. I also feel my best about 30 min after I get up and do well for a few hours. Then without warning about 3 hours into my day I begin to fade. The only way to get better again is to lay down...but yes...the mornings are my best.

So you are not alone!!

Erika

I am no doctor but honestly, beta blockers are the only way for me to function. I reallly felt like I was gong to have a stroke before they put me on bb's. I saw one doctor who said that I really needed to get my hr under control before I did have a stroke or my heart gave out.....but she was not a cardiologist. BUT I must say I am 46 (not 25) and my hr was 150 - 180 everytime i stood up.

On a final note, my firrst cardiologist did tell me that he liked hr's between 60 - 90. He wasn't happy with them over that...he didn't explain the details but I was too sick to ask and the bb's made me feel a lot better.

That is just my experience...Erika

Jump -

I always enjoy when you post....I have no real understanding of the difference. BUT I wanted to say that please have your PCP test you for whatever you think you need. The way I see it...we are customers...I mean we don't have to be difficult customers but really..most all my doctors will order anything I think I need....I think we deserve that given that we are so disabled so much of the time....I mean it is not like we are suffering from a 3 day flu.

Just my 2 cents

Erika

Melissa,

i am pretty sure my dizziness and lightheadedness is almost always related to being upright too long, too much activity, and/or heat....i think not getting the blood to the brain thing. It really scares me...is there anything that can help that?

Thanks,

Erika

Just wanted to tell you all the heat index was 109 today in Florida.....I had to pick up a couple of things outside today (outside just a few minutes...)...got so dizzy, faint...ill...so when I had to take my daughter to a function I got real scared....

I hydrated myself...rested for several hours....parked the car in the garge..unrolled the windows..then turned the ac on in the car 10 minutes before I had to go....

It still was not real pleasent but way better than jummping in when the car has been in the sun like that!! Thanks all for the suggestions....I feel like a bat...i am getting afraid of the sun!

Erika

I will ask. I think he will be very happy to do so!

Also count me in as well.

I am not sure...but I try anyway. I like what firewatcher said...do a little..what you can. I never do anything crazy like really push myself (I have learned that it is just not a good experience afterwards ). I try to walk around the block...somedays I can bring my 1 1/2 lbs weights with me and somedays I can't. I try not to get too upset with myself when I can't.

I know that deconditioning is not a good thing! I also know that I can't do very much...it seems to be that delicate balance.

Erika

Yeah I think there was a similar study either from Vandy or Mayo on this topic. It showed that 6 POTS patients had similar antibodies to people with peripheral neuropathies of various types. patients all had stomach issues and pupil problems as well as POTS.

Thank you!! I am gonna hunt for it. Really my POTS EP is great...although not all that familiar with Guillain Barre...my neurologist is great too (treats for residual Guillain Barre) but not familiar with POTS... but we will get there I am sure! I am gonna guess this would aide in my individual treatment plan...or at least am hopeful!

Flop -

Thanks... you are so knowlegble. I wanted you to know they did the arterial blood gases test...that is where it was 77. I couldn't walk across the room. The lady thought I had a pulmonary obstruction... I didn't. Beta Blockers changed my life! I started to be able to move alittle again. I don't worry so much about my O2.... It just seemed before they put me on the bb I kept getting lower and lower rbc, hemoglobin, hemocrit, lost a bunch of weight, and my O2 sat got bad. A doctor friend of mine (GP) who was probably grasping said that if the heart rate is so high (affter 150) your lungs can't produce enough oxygen to keep up with it....?? Have you ever heard of this?

Thanks,

Erika

I saw this video on POTS and wanted to share it...

http://www.tangle.com/view_video.php?viewk...fd661e&sp=1

Yes...."The Climb" by Mylie Cyrus. My kids laugh at me because they think I am way to old for this singer....but one night I was so afriad so sick so lost etc. etc. not understanding POTS...awful. I heard that song and thought "that's it!".

Thanks guys! It sounds very serious. Symptoms do sound overlappnig somewhat but doesn't soundike the hr increase on standing.... ??

I just received an email from a woman I have been correspondeing with who I have always thought sounds like she has symptoms of POTS....but she is saying she thinks she may have pulmonary hypertension....has anyone heard of this?

Is this similair...just checking...I know you all aren't docs but you sure have a lot of info!!

Thanks,

Erika

Suzy -

I am sorry to hear your difficulties....I used to wake up at night gasping for air (when I was trying to still work). Many times my breathing is bad...especially at the end of the day or when trying to do anything....it is very much POTS related for me (I figure...but I am no Doc). I am very thin. And yes...I have heard it all too from "you are deconditioned" - soo I told them "but I was playing tennis 3 months ago....before I got a virus!!"....they never listened...but my POTS docs listen...

Good luck.

Erika

Hi.

I have a great EP who is willing to work with me and does reading on POTS, although he is not an "Dysautonimia Specialist". I am thinking of going to a Dysautonomia specialist but I will have to pay for it myself as he is "not in network" or I can try to get into Vanderbilt. My question is, is it worth it....can they reallly do more for me? Is there value in knowing the exact in's and out's of my dysautonomic dysfunction? My EP has tried some anitdepressents, florinef, midorine...and I am on toprol.

I had Guillain Barre in 2001....which is an autoimmune response that afffects the periphrial nervous system. I did hear once that Vanderbilt might be doing a study in some correlation, which obvioiusly would interest me. But if not...is there really value in spending all this $$? I would sell my right arm to feel better...but I'd like it to look like an optimistic venture at least..

Thanks,

Erika

Sometimes it is more difficult for me to swallow.....more of challenge. This is when I am otherwise feeling awful....out of curiosity, what is the problem with your larnyx?

Thanks,

Erika

Mine was (and perhaps still is) very very low. Can't recall what it was. They only tested me as before I really got a diagnosis I wanted to be tested for iron amounts that are too high. I have family that have this condition (yet I can't remember what it is called).

Anyway...they had to do a detailed test and then found this....but my regual iron...hemoglobin/hemocrit was low but not like the ferritin

Flop - or a one of you who are much more knowledgeable than I - I always thought my hemoglobin/hemocrit rbc's were so low and kept getting lower, was due to the very high hr before the diagnosis..... I never really knew it was my hr. I just knew I couldn't breathe and felt sick. I saw a pulmonologist and my O2 sat was like 77. We all thought I had a pulmonary obstruction. They kept testing my hr when I was sitting...then one day they got me standing and it was 150...so we started to put it all together. The pulmonary lab tech was the one who said to me...you know this could all be your heart...not your lungs.

Erika

You guys are so great! It just helps to vent. I have such guilt over my kids...especially leaning on my daughter. But after driving in the heat etc. there is no way for me to cook much less anything else. It make me feel better to know there are others in my shoes.

Summer - yes..I feel so bad about the brain fog too...my son is starting to constantly chat...asking all sorts of questions...I don't even know what he is saying when I am having a real "sick" period....sometime he willl just look at me and say "oh, forget it".

I will try a shade for the car...never thought of that. I also think there is really something wrong with the car as it doesn't cool until it is actually moving. So I am going to get this looked into. (this way I can have it cool in the driveway). When we sat at a traffic ligt thru a series of 3 red lights..it got awfully hot and I got very nervous I wouldn't make it home. BUT even my healthy little boy (11) said...wow mom..I don't feel good its kind of hot.

Thanks,

Erika

Hi.

Just wanted to vent to those who mighht understand. I am a single mom. My kids re 11 and 15. I was just getting a routine for me when school ended here in Florida.

My daughter (15) is a cheerleader. Cheerleading practice is from 2:30 - 4:30 twice a week. The school is 8 miles away. The car barely cools down from the 102 degress it was registering on the dash when I get all the way home. I want to be able to do this.....but the heat is so hard for me. I can't even think or talk once in the heat like this.

I am back to sitting on my couch now....with the ac on....and am telling them to please be queit....! I feel soo bad for my kids...they try to uinderstand but obviously they don't really get it. My head hurts....I told my 15 year old to fix dinner!

Erika

You are all soo right!! I don't know when I can push thru and when I can't. I think the big one for me is not to be afraid to try. Sometimes I am soo sick afterwards that I am afraid .....I try to connect the dots and don't want to do whatever has made me sooo sick.

For me, if i have been even up (not reclining) for more than a few hours....I begin to feel ill. Never seen anyhing like it...never heard anything like it....but go figure...it sounds like I am not alone here.

Shoe,

I am almost jealous! I wish I had some one with that degree of knowledge............sounds like he is aware and comfortable with dysautonomia! What is the lumbar puncture for?

I have a great EP but I have been thinking of still trying to see this doctor that specialized in dysautonomia. He is out of my network ( will ptobably have to pay for it myself) and it will take months to get in but he seems knowledgale....and not to complain with too much emphasis but I have been really suffering and I would really like my life back if possible!!!!!!

Erika