Chronically Hopeful: [Endoscopic Sinus Surgery + POTS]

[sm111165]

hi everyone you asked for surgery comments. I had surgery before I was rx'd with POTS. I am sharing my experience in the hope that my story wll help others... I had a procedure that was meant to be a out patient surgery. Instead what occured was while i was under general my blood pressure droped to a dangerous level. I did not wake up from my suregery till 12 hours later and my Dr. anesthesiologist was holding my hand calling out my name to me with a very sheet white nervous look on his face

[nonebutourselves]

Love it! Brain fog delirium can be hilarious if you can laugh at yourself and just go with it. Sorry your recovery was so rough though. I was totally there too for a few weeks after I had sinus surgery. I ended up exhausted, only healing half as fast as my ENT said I should, and feeling super hopeless. Totally worth it in the end though. Yay for normal people headaches and sleeping through the night!

[ikesworld24]

And by the way i'll be 24 on valentines day 2011 and I think jersey shore makes me feel funny

[ikesworld24]

And u should find me on the facebook P.o.t.s pals ??? lol

[ikesworld24]

Hey my names Mike from Cleveland Oh area and I have a surgery coming up next week for a deviated septum to be corrected and I have to get anastegia. You and your video were fun to watch, and helpful ,I'm glad someone posted something about it I have p.o.t.s 2 , I have to like lay down in the car as well haha! you are funny , so I am like in love with you and we both have p.o.t.s so it could never work because like doesn't one of us have to be functionable lol

[Palaecro]

That's amazing you had the surgery. How many ENT visits did you have before they let you apply for it? I've got a bad chronic fungal infection in there, I'm sure.

In the past few years I've been getting strange heart pains, panic attacks, sudden low blood pressure etc. I've read about POTS I'm curious how you got diagnosed. In Canada its next to impossible to get any help from the doctors.

They did EKGs which said I'm fine when I've had to suddenly go to the ER, how did they detect yours?

[24ducks99pigs]

Oh wow POTS must really make you extremely tired, that must be so tiring. I mean, to be that exausted all the time, man that's s tough. Hope you get well. Best of luck.

[Heatherstl1]

Kyli, I'm really glad your surgery went as well as it did. I wanted to let you know that I too have found that the less sleep I get, the better I feel (but gotta have that afternoon nap!). Also, I have ridden in a car many times just as you did...w/my head even between the front seats and my feet on roof! It is the only way if the seat will not recline.

Have a great Christmas!

Heather, St. Louis

p.s. I've begun Mg IV's and it's made such a difference. Also O2 therapy due to hypoxia is great.

[DYSAUTONOMIAGIRL]

I was fourced to lay like that before in my friends car on the way to NJ!!! AH!

[DysautonomiaMD]

Hey, I'll be flying home tomorrow and I really miss being away from my POTS family.

Please be in a little touch with dysautonomia1; see comment on her last video. Thanks. I know you will know what to do.

LOL, Margaret

[zefreak]

Your videos cheer me up, even the ones where you are miserable!! (Does that sound terrible? Sorry!) Anyway, I hope you never have any more sinus trouble ever again now!

:) Love ya!

Stacy

[chronicallykyli]

Doesn't sound terrible! lol. I'm sooo happy they're uplifting to you :) I thought this one was going to be a real downer lol.

[bkd92]

Oh man so many videos on this topic. Check out the ones for balloon sinuplasty - crazy stuff.

Worth a look if you have sinus trouble though. Procedure doesn't jack you up like sinus surgery.

[2136cass]

I hope you are feeling better! Thanks for the video update! I always look forward to them.

I have not had sinus surgery, but I did have a laparotomy done with undiagnosed POTS. The recovery was EXTREMELY long (about 10 weeks)! My biggest down-fall was I wouldn't drink enough fluids because it would hurt too much and take too much energy to stand up and walk to the bathroom.

Stay strong and keep hydrated!

[chronicallykyli]

It's so hard to drink as much fluid as you need, isn't it? I'm having a tough time with it. Thanks so much for the get well wishes (hugs)

[Stacey31233]

Hope you are feeling better :) Stay strong :)

Stacey

xoxo

[chronicallykyli]

Thanks Stacey!

[dottynic]

haha, this vid is hilarious.. i ride in the car like that too! hope you are feeling much, much better!!!

[chronicallykyli]

Haha..I will think of you and all the others the next time I do it so I dont feel like the only crazy person laying in a car like that LOL.

[hiphopqueen265]

gosh kyli, i love you <3

when you started talking about the pain that you were in and how you were finding little things to laugh about, and you looked so happy with that hamburger, i smiled. Living with POTS is no fun, and i too am always smiling and laughing, and taking everything in. Life is too short to be miserable. I admire your strength and love for life. feel better soon! xoxo <3

p.s. I lay in the car like that all the time! ;)

[chronicallykyli]

Gracie, so glad my video made you smile. Thank you so much for the kind words. (hugs, hugs, hugs) You're right...life is too short to be miserable. Lately I'm pretty miserable though, lol...but I always realize sooner or later that it only makes things worse. There's so much in life to be grateful for, always. Hope you're feeling great!! Ttys.

[DysautonomiaMD]

You look wonderful. Being an Anesthesiologist, I'm impressed you made it through and documented this for us with such a great attitude.

For low blood pressure in the operating room, the Anesthesiologist may choose either ephedrine or phenylephrine to increase your blood pressure.

Only use phenylephrine (AKA neosynephrine in the USA; not sure of other names of other drugs).

For many, recovering from surgery is HARD.

Very informative, optimistic by nature, and a great scientific piece, too.

[poetrygal1]

Hi!!! I am glad you are recovering! I pray you will get complete relief :) :) :)

I had an upper endoscopic GI and they only used propohly(spelling?) but it sent me into autonomic crisis eight hours later, so it was not fun :( I have never had general anesthesia-thank goodness!!!((BTW-Sonic Burgers are the best- LOL!!))

[chronicallykyli]

Really! Sonic? I don't know if I can go that far down the junk food path but someday I might have to try them ...!! I'm working my way back to fast food at this rate LOL.

[livingfaith17]

Can anyone please explain the difference between ME/CFS and POTS?? Never heard about POTS here in Norway..I have had ME in 4 years now and I am just 18...What a terrible illness!...

[chronicallykyli]

I don't know enough about it to answer this (Nate!!!?? You know much more about this than I do!), but I know the symptoms can be very similar! (hugs) Im so sorry you're going through so much.

[SharkBateNait]

How did you know I would read this? lol

Well, I'll give it a shot, that's a good question. I've put some thought into it and here's what I've come up with:

Short answer: POTS seems to include dizziness, nausea, heaviness, fainting and blood pressure issues. Miss any?

My best guess at this point as far as the POTS/CFS relationship is that POTS is one large area of particular symptoms in the larger CFS illness spectrum.

[SharkBateNait]

CFS is a big, complicated, multisystemic illness, so it affects heart, digestive, nervous, etc., a whole bunch of body systems. POTS/dysautonomia seems to revolve particularly around blood pressure, so I wonder if POTS/dys is actually the heart part of CFS, or something along those lines.

[SharkBateNait]

So many people with CFS have some form of POTS/dysautonomia, that maybe weve all had the same virus or whatever hit us, and we all just have different degrees of POTS/dys symptoms. For some its really obvious, some wouldnt even know theyve got it. Were each hurt in slightly different ways, and the damage is expressed in some random combination of physical issues/symptoms. I think POTS may be a severe level of a particular CFS symptom.

[SharkBateNait]

Its pretty clear theres no one kind of CFS; there are endless combinations of all possible symptoms and the different severities of each symptom. Ive still never met someone with exactly the same issues as me.

I could be way off, just my amateur attempt at a theory, maybe someone better informed can correct me. Let me know what you think. :-)

[chronicallykyli]

Nate, great explanation. I completely agree.

[xNikki713x]

I'm glad to hear you're doing better since the surgery. Hopefully it continues in the right direction for you! :)

[chronicallykyli]

Thanks so much Nikki!!

[ashpauls]

aww sweety im so sorry! that bear you got is weird! but totally cute lol. i didn't know why you were getting the surgery before other than to do with your headaches. i have the same problem, with crazy every day allergies. i hope it only gets better for you from here on out :) *hugs*

[chronicallykyli]

Thanks so much Ashley. :) I know! Isn't that bear just bizarre?! LOL. I love it.

[SharkBateNait]

You are amazing, I love this video

[chronicallykyli]

Thank you sooo much. I thought it was going to bore people to death! lol

[suitepeajen]

Im happy to see that you are recovering! i hope ur surgery makes a big difference in your life!

[suitepeajen]

Omg surgery was always crazy for me! i would always have a different reaction each time. i had my appendix out a year ago and had incredible trouble waking up and breathing but i eventually recovered. i also had 2 c sections and i also had issues breathing after those.

[chronicallykyli]

Thanks so much Jen. That sounds scary...nothing is worse than feeling like you can't breathe. What a horrible feeling!!

[chronicallykyli]

Carlie,

You have no idea how many doctors have thought I was crazy over the years too. (hugs) It makes me so angry everytime someone tells me that. I had my tonsils out when I was 8. If it helps any - I also had my wisdom teeth out earlier this year and that was a really easy surgery. The anesthesia they use is different. I actually felt good afterward! Talk to you soon!

[kiyone888]

i had my wisdom teeth out almost a year ago and i felt amazing after the surgery too for some odd reason (other then the drooling blood part) i do not know what is in that anesthesia but i want it again.

a week later though all my symptoms came back and i almost passed out when i was out with freind, that was not fun.

[chronicallykyli]

What is that! We need to investigate lol... they could use it to formulate a new POTS drug., haha.

[ditzylittleme]

Howie and my Grams!!!!!!!! I love how they look so serious and ur all smiles and ur the one getting the surgery lol

[clw1or1clue]

If I can avoid surgery I will because i had such a bad reaction to it but I'm afraid that I will need to have wisdom teeth out in a 1 or 2 so I'm kind of worried about that. I hope you feel better.

[ashpauls]

@clw1or1clue I waited 10 years to get my wisdom teeth out and I was awake for it.. and honestly, don't put yourself through the wait. I had zero pain and it didn't effect my pots.. just had a gross taste in my mouth when I burped lol. It's not bad at all. the worst part is being scared to get it done. i didn't even need pain pills afterwards. best of luck hun!

[chronicallykyli]

Yeah! I was the same way. I wondered why I waited so long...hardly any pain at all :)

[clw1or1clue]

I had my tonsils and adenoids and my POTS got so much worse and thats when my fainting,blood pooling,coldness, etc they were afraid that they cause me to have a blood clot in my legs they did a bunch of tests and they thought I was crazy and that I was just do it for attention (this was a year before I was diagnosed with POTS)