If You Have No Expectations, You Don't Get Disappointed!

[sue1234]

Well, I don't know why my endo wanted me to consult with a neuro while I'm here at the "clinic". Well, I think he wanted my POTS to be looked at. The neuro was very nice and pleasant. But, first, due to that odd TTT position with the arms up, I now have a "normal" TTT and I DO NOT HAVE POTS ANYMORE! Yay!!

Oh wait, somebody forgot to let my body know that I don't have POTS anymore, because my heart still races and I still get lightheaded when upright. I'm being a little quirky here, because the doctor literally told me that I am probably well because the TTT didn't show POTS. My heartrate only went up 26 points,not the 30 for the POTS definition. So, I am just dandy. I am well. WT*?!? I am worse now than when my POTS journey began.

The doctor looked on the internet to find me information on POTS to print out. When the doctor typed in POTS in the search engine, and the first thing on the list was POTS according to Wikipedia, I'm thinking once again, WT*!! I am going to be given a printout of what POTS is after having done enough research on it the last 6 years to have earned a doctorate in POTSotology!

The saving grace out of this appt. was the doctor actually had done training with Dr. Vernino, so the doctor highly recommended me seeing him, since he is only 6 hours from me. It was said he was a smart doctor.

Lesson learned---see POTS-knowledgable doctors. The doctor was nice and probably very knowledgable in other specialty areas.

[Dizzysillyak]

Obviously all you need to do is keep your arms up over your head when you're upright. Problem solved .. Lol

Ok, just for jollies, I'm going to try this when I get up again.

Seriously tho, I'd be very disappointed if I went to the Mayo clinic and met a neurologist who googled pots and

was content with wikipedia. Wt ?

Hope you get better answers from your other tests .. Tc .. D

[sue1234]

I forgot to mention that exercise is the treatment, too!! That was the first thing that came out of the neuro's mouth. How come I am the only person here who never gets offered Mestinon as a form of treatment

Dizzy, yep, we'll walk around with our arms up and see how that works for us!

The neuro wasn't actually looking at Wikipedia, it was just the first thing on the list. I was wondering there for a minute, though!

[Christy_D]

The Mayo in MN told us last fall that my son no longer had POTS, but was POTSY? They said his POTS is in recovery, but he has only gotten worse than ever this winter and still into early spring. They did a 10 minute TTT on him to base that information on. The TTT he had done in Cleveland was 40 minutes. So, we disregarded their results and luckily they are the doctors that are treating him.

[sue1234]

Christy, same here. I've had 3 TTT, arms down, all lasting from 30-40 minutes. On the others, my heartrate did go up the 30 points within the first 10 minutes, so this TTT was not representative of my day-to-day issues at all. I'm glad your son is getting good care.

[HopeSprings]

Hooray, you're cured! Oh wait, isn't this the same clinic that recommends punishment for sick POTS children? (nope, still not over that one.) Enough said. I'd go to Vandy if possible... but you're probably over it for the moment. Hope you get better results on the endo side of things.

[AllAboutPeace]

Ok, that is insane!!!

I have my first TTT in June and I'm not even sure I want to have it for fear that a crazy 'potsy' fluctuation will happen that day. I've had poor man tilts and they all show POTS, plus I've been completely not functioning outside of my house in over 5 months (even in the house functioning is limited). I can just imagine what kind of support I'd get from my docs if the tilt is inconclusive...

A single TTT should not be a diagnostic for such a variable illness (especially if not done properly!!)

That's crazy, Sue...

[issie]

I'm glad Dr. G at Mayo in AZ - doesn't look at it that way. He says we can have good days and sometimes our hr doesn't go to the 30 point rise. If you're really well hydrated it might not. That's one reason why they say to fast before the TTT and that includes drinking.

Sorry Sue, just forget that - you know you have POTS. Hope they figure out something to help you.

Issie

[HopeSprings]

Dr. G seems like a rare gem, Issie. Wish they were all like that.

[bellgirl]

Oh no, Sue; that's awful, of course you know you have POTS...Hope you are able to find some answers from someone who knows what they are doing...I'm sorry, but I once had a neuro doc that thought I was crazy; needless to say, I didn't go back to him. Now I have some wonderful doctors, and I am so grateful. I will pray that you are able to find some, as well...Raise your hands if you're SURE!!...sorry, I couldn't resist. Having a sense of humor does help with this, though Make sure your arms are down, next time!! I know it sometimes gets frustrating

[Chaos]

Personally on my TTTs at Mayo (I've had 2 there), I've never met POTS criteria but they still refer to it as POTS and/or Orthostatic Intolerance. Luckily I met POTS criteria locally (although the local doc refused to call it POTS) and also at CC where they did the 45 minute version of a TTT.

Sorry you're having to do the mental/emotional tango with hearing this kind of nonsense. It would seem that even if you are doing a google search of POTS you don't have to dig very far to find that it can vary highly from day to day.

Also, I swear there is some tie in with adrenaline. Why is it that so many of us can be "ok" in situations where we're a little nervous (like a doctor's appt or if you have a big event you have to get thru) but then we crash so badly the next day/ hour/ minute? There has to be some reason that we can recruit enough adrenaline/epinephrine to get thru that situation but then the bio-chemistry changes and goes back to "normal/abnormal" and we are symptomatic again. Wish I could find some research to support this because it seems to be what happens in my body.

Good to know that keeping your arms up cures POTS. Then why does my HR go up so much higher when I dry my hair compared to how high it goes when I'm just standing? Must be the "exercise" of waving my arms around holding the blow dryer's weight that does it. LOL Yikes!

[Elegiamore]

Sue - sounds like you got the same neuro at Mayo FL I did! Sorry! The whole illness/journey is so frustrating.

I've been tested for POTS at Mayo Rochester, Mayo Jax, Vandy, Emory University and Cleveland Clinic.

FYI - hands down, Dr. Fouad, Syncope Center at Cleveland Clinic, did the best quality and professional tilt and other testing on me.

[jenglynn]

Sue- I'm so sorry. I had a TTT at Mayo but honestly can't remember the position of my arms. One thing I have learned at "Certain Large Medical Facility" who specializes in autonomic issues- and this is MY experience only and for those of you who have had better experiences, I am so grateful- is that they seem to have tunnel vision, they dont like to look at the big picture! Each specialist you see concentrates only on their specialty. Looking at our bodies from that mindset can be dangerous.

And Chaos- I could not agree more with you about the adrenaline!!!! She, maybe your hormones were not the same and we are talking 4 beats per minute! 26 is just as abnormal as 30!!!!

I spent most of my 20's relatively "flare" free and I think it was because my life was SUCH a mess- married to a VERY physically abusive man- who liked to PUNCH me in the face, among other things. He also was/ is a compulsive gambler so our financial sitatuaton was always a MESS (example: this man once went into the closet where I kept Christmas presents while I had the kids sledding- and emptied it totally. He took every single thing back to the stores, returned them for the money, and headed to a casino. I had made it quite easy for him-all receipts were in an envelope labeled "Christmas Gifts" in plain sight. He got almost every penny back.. Over $1400- I'd been shopping since July. Oh, I might add- this was 2 days before Christmas. Luckily- I checked the mail that day and ibreceivedca Christmas card from my Grandma- who is very generous and more than enough money and she suspected my life with my EX was not all I pretended it to be (but I tried to hide it from everyone. I was humiliated that my life came to this.). Back to my point- I was ALWAYS flooded with adrenaline. That's was the only way i could function. There are thousands of even worse stories than the one I shared- but I was just as addicted to adrenaline as a heroin addict is to their drug. I know without a DOUBT that at least with me it's a factor. After I finally left him (2 weeks after that Christmas) I moved , got a new job, and spent the next 2 years much the same, I was a single mother of 4- ages: 8, 6, 4 and 2. Life was always a complete chaotic crisis after the next. My ex wouldn't leave me alone, he would somehow get in my house in the middle of the night- if I wouldn't wake up- he would steal things, get in my computer, take any money I had out of my wallet. Sexually assaulted me a few times. Finally I knew I had to leave. I was afraid he'd kill me. I found a note on my son's birthday- enjoy it- it's the last one you'll ever be alive for- profanity. Every day therewasa nite like this. I moved about 2 hours away to live with my brother. Then my long distance boyfriend made the HUGE leap of faith- my kids and moved from Cali to Wisconsiin. Kids on I lived on our own while we got to know each other- and my kids and his his bonded with us and each other- then we did it! Got married! Major stress to bond two families with 4 kids-so my friend adrenaline stayed with me. It wasn't until about a year ago- things had calmed down- got appendicitis , 6 weeks later major knee injury- and though physically I hurt- mentally I was good. I'd gone 4-5 months without work (very high stress) and I felt calm and at peace. No one could believe how well Rob (new hubby) got along and how well we all get along (weird, I know, but my BFF is his ex-wife). I finally felt at peace for the first time ever in my life, childhood with two abusive, alcoholics and drug addicts didn't give me the best start, I raised my brother.

I finally felt that was ALL behind me. Two weeks later- first syncope in many years. That was April 2011. A year later- I can't get out of bed. I have organ failure. . Spent 2 months in hospital. I stand 30 seconds- I'm unconscious. 10 concussions. Cognitive dysfunction. Bladder doesn't work, and kidneys don't either, and thyroid is crazy. The list goes on. None of the really bad flares (like now) happened until I had peace and became less of an adrenaline junkie. I'm convinced of a connection somehow, but no one takes me seriously.

I know that was VERY long but wanted to show the difference in my "old" life and "new" one. You'd think peace, love ad happiness would make me healthier. Instead, it activated these diseases that were just waiting. I would love to see someone study a connection. Maybe it's not there for all of us- but I'm sure it's there for me!!!

Sorry for the length.. I didnt mean for that to become therapy: but it did. Now I owe all of you a ton of $$$.

Jen

[songcanary]

Jen,

I cannot believe what I am reading. I experienced the same thing as you. For my entire life I had been 'putting out fires' until 2006 when I finally started living like I should. And that is when my symptoms reared their ugly heads. How strange. But a very interesting post!

[Chaos]

Not nearly as dramatic as Jenn's story but similar in that I've lived in high gear for so long. Finally had things calmed down a bit and was having time to "relax and smell the roses". Started doing more things I enjoy that I'd put on hold for years. And then....wham! That's what's been so frustrating. The docs kept trying to say "you're stressed, you're anxious" and I'm thinking "I haven't been this relaxed in YEARS!!" If this was stress related it should have started 10years ago...not now.

SORRY SUE! Didn't mean to hijack your thread. But, I do still wonder why so many of us don't test as weird at the doctor's as we do at home. The other thing that seems to be consistent for a lot of us is that we all seem to be stressed about going to docs because we've been blown off for so many years and so it's a major adrenaline rush to see any doc, even one you know has been sympathetic in the past. Wish I could figure out the connection.

[sue1234]

Y'all are not hijacking. Go ahead and talk.

Jenn, what a horrible experience and glad you came out of it with a new, happy life.

One thought I've been thinking about for a while is antibiotics and the changes that they do to us. I see you had appendicitis and knee surgery. So, apparently you took antibiotics before your POTS(and all else!) hit. Anyone else? If so, I may need to do a poll.

[issie]

Yeah, sue, massive antibiotics that messed me up royally more times than one. Maybe, that changed our gut ecology and created the monsters within us.

I just bumped a thread on the hypothlamus and there is an article that Potluck had posted about kindling and chronic fatigue. It is really very good - although very long - but, it is showing that from past experiences - like with adrenal release our body starts to do things and gets into a pattern and remembers that pattern and continues to repeat it - until there is a sort of crash. Like what you guys have been talking about with adrenaline. It might take reading it several times to digest what all it is saying - but, there has always been such close connections to our POTS and CFS. I think if one gets somewhat figured out the other one will also. Good article on kindling response.

Issie

[HopeSprings]

I took antibiotics in the month before the dramatic POTS symptoms hit. Levaquin. I think I've asked this before (about quinolones specifically) because they can supposedly do horrible things to people. It's one of my suspects.

[sue1234]

Hmmm. Interesting. I took antibiotics(my mind cannot think of what it was right now) a few years before POTS for my first bladder infection, and it made me feel awful. My stomach bloating started not long after, so assuming it messed up my ecology. I just know the antibiotics made me feel awful. I asked a professional if it was supposed to make me feel so sleepy, and they said no. I had to take it a couple of times over a couple of years.

[jenglynn]

Sue- interesting!!!! In late Oct. 2010 I felt pain in my side and thought I might have appendicitis. I don't know about everyone, but my appendix pain was just- different- than any pain I had ever had. Not the worst- just different. When I got checked I had no fever(well since have learned that my "thermostat" is broken so I NEVER get fevers- EVER- but I had a bladder infection. It was decided that was the. Ause of pain- given strong antibiotics and sent home. 3 weeks later- same symptoms come back. This time they did a CT but the ER doc didn't anything but I had another ( or the same bladder infection) so they kept me overnight and gave me really strong IV antibiotics and sent home with what they said were the strongest antibiotics available in pill form to kill this bladder infection. 5-6 weeks later, right after Christmas-pain came again- this time REALLY bad. I go in and physical exam looks like appendicitis but guess what- another bladder infection. I am so prone to them- have a distended bladder- odds are every time I am tested I will have one. Doctor tells me it SEEMS like appendicitis- and advanced- I'm writhing in pain, white count thru the roof but no fever. Anyone with advanced appendicitis has a fever. They order a CT ( I didn't even know you could see th appendix on a CT) and this time he looks at it and he can see about 30% of it. He said its definitely appendicitis so SIX hours later I go have emergency surgery. Go thru same spiel with surgeon- your temp is 96.5- how can this be appendicitis. Just take the stupid thing out. They did- very carefully it seems- it was 80-90% to rupture! But I was on antibiotics 2 weeks after that. Then with the knee surgery- a week before and after as well.

So I had a LOT of antibiotics in my system from Nov-March- which is not normal because it's rare I take any. Plus two rounds of anesthesia didn't help at all. I go thru complete autonomic shutdown that lasts 3-4 weeks after anesthesia. At least now I know what it is. BP is way off, HR high, can't pee- etc.

And I was miserable all that time on antibiotics too, Sue!!!! Sure my autoimmune disease was just a raging mess.

Ths is all so interesting!!!!!!

Jen

[issie]

Jen,

I had similiar issues with my appendix - but, because I didn't have insurance and was young 23 - with no help. They didn't take it out and mine did rupture and cause massive internal damage. The only thing that saved me (so I was told) was the massive antibiotics I was given. But, didn't have the surgery until 2 years later and the internal damage was horrible. Because, I had always wanted kids - they kept trying to do clean ups on me - but, gave me very little chance of getting pregnant. Sooooo, 8 abdominal surgeries later at age 36 I had a complete hysterectomy. No kids - sigh! All because of no insurance and doctors not caring. It actually was a whole lot worse then this (I got pneumonia at the same time and also because of the massive antibiotics it gave me ulcerative colitis that I had to do chemo for). So, any of the three things could have killed me (and almost did) - but, I survived. But, have had issues every since.

Issie

[Christy_D]

Dr Afrin supposes that an absessed tooth was the cause of my sons problems of which he took antibiotics for before finding the absess. Every lymph node in his body was swollen.

Christy

[Katybug]

Several classes of antibiotics, specifically quinolones, can damage the central nervous system. I really can't even decipher at this point if my POTS-like symptoms became worse during/after the atibiotic treatment for Lyme...it all runs together. But, add me to the list of massive doses of antibiotics.

Sue - I am sooo sorry you are getting the run around about POTS/TTT. What a crock! I am thoroughly convince that getting a good doctor when you have anything besides strep throat is like playing the lottery these days.

My theory on the adrenaline...I almost feel like my body can be forced into a working state when under stress for a short amount of time these days (almost from a fight or flight mechanism), but, can't sustain it for very long. Then, when the stress is over (i.e. I get home from taking myself to the doctor), I have massive adrenaline let-down and my body becomes completely deregulated again, including having adrenaline surges because the autonomic dysfunction takes over. That's at least what my body feels like its doing.

[abbyw]

Very interesting. I took several rounds of antibiotics for dental infections and for trying to treat IBS right before my POTS set in. The antibiotics made my IBS flare for months instead of curing it and as soon as I started healing from that, the dizzy spells, exercise intolerance, freezing chills and orthostatic intolerance started.

I took Flagyl and Augmentin.

You think that the antibiotics could have caused this?

Abby

[CharmedLinz]

So sorry for your troubles Sue. I know the feeling, it really bites walking in to a Doctor all prepared and walking out with LESS than you had walking in. As much as we try to laugh about it, really it just wears you down.

As for antibiotics I was on major doses of Flagyl for Giardia as a 3 year old and subsequent chronic ear infections. My Mom remembers me being on AB's for probably 6 months.

Flagyl is listed on SFN sites as a possible cause for SFN.

My Mother also took what she remembers as being Bendectine while she was pregnant with me for extreme morning sickness. The drug was later pulled as causing birth defects. So who knows.

Then again I've also had several concussions as a young pre-teen.

But we believe my issues started at birth so really we keep trying to go back there, and the Docs keep pushing that aside.

As for the specifics of POTS every Doc seems to have a different idea of it's parameters. Local Cardio doesn't think I have it because my HR isn't always high.

Arizona Doc put me down as "question of POTS" because that day I didn't react to a poor man's tilt, but I was chatting through the whole thing with the nurse answering her questions.

My main Dysauto Doc in Alabama says it's not classic, but it is POTS as a HR that goes down to 40 or lower every night and up to 137 for just brushing my teeth isn't normal.

Just keep trying to laugh, it's all we can do.