Did You Intuitively Self-treat Before Diagnosis?

[erik]

I didn't know about POTS until recently. I didn't know it existed. I didn't know my heart rate (and other stuff) did such strange things. One thing that was uncanny was reading advised "lifestyle changes" that can help. I had already bumped in to some on my own! Did you "intuitively" find ways to help yourself? Did this happen long before a medical explanation or advice was available? (Please forgive me if this is an old/common topic) Some of my personal examples:

* Had years of "mysterious uneasy feeling" sleeping in a regular bed, and slept in a recliner instead (at an elevated head angle) literally all but a few nights. I had no explanation but when I was free to do so... I always chose the recliner. (No, there wasn't an angry spouse in the bed to otherwise explain this

* For quite some time, I've been a waterholic... even before it was "cool"! I literally made up the rule for myself that I would slam a big glass of water between each coffee. This combo worked for me while coffee alone drained me worse than none!

* I make adaptations of avoidance, withdrawal, and detached sensation & behavior. I "numb out" to counter what would otherwise be panic (so I'm super-mellow on the outside rather than appearing anxiety prone) and avoiding things is just part of dealing with such a condition.

* Despite no known allergies, I "like" Claritin-D enough to tolerate some extra palpiness! Maybe the "pressor", "vasoconstrictive" and other effects are especially helpful. I'm hoping more direct meds will assist.

* I consciously decided (and even said to others), that for me "more salt was better"... despite obvious common knowledge. Now I know why I'm a contrarian in this issue!

Did you have any quirky, eerie, tragic or humorous such "coincidences" that suddenly made sense once your knowledge of POTS/OI/other came into the picture?

[bjt22]

I love this topic!

The funniest: When I was in high school, all the girls wanted to be Farrah. So, in order to get this look, hair had to be done every day. I would wake up at 5:00 AM, get in the shower, and then lay back down on the bathroom floor for at least an hour before proceeding. I even brought my pillow and a blanket into the bathroom with me every morning. Ofcourse, every one asked why I didn't just sleep for an extra hour and THEN get up and shower. I really didn't have the words to explain why I needed to lay down for an hour after I showered, but I certainly understand it now. I also dragged a chair into the bathroom to dry and curl my hair.

I've always sat crossed legged my entire life as well. Few times in life have I ever sat with my legs hanging down. Quite unfeminine of me, I know...but I guess I just knew it made me feel better.

After the first three or so months of pregnancy, I usually felt much better...in some ways, better than normal. I honestly believed it was something in the prenatal vitamins and went around for years singing their praise.

[kayjay]

YES... I took allergy meds depending on my symptoms. I always kept moving. My husband was just laughing about how I used to think I was allergic to Home Depot and Lowes (I was standing waiting for him!!!) I would get sooo sick. Now I take a stool. I also bought MBT rocker shoes (now I have 5 pairs). Also only my hubby knows this but I would chew nicotine gum (I am not a smoker!!) when I was teaching b/c i knew from a school project that nicotine helps people concentrate.... It helped with my brain fog! When I taught Kindergarten I spent so much time on my knees, instead of bending over. I "walk" around the classroom on my knees. We have a king size bed and I always wanted help making it... now I know why. I also hated to wash my face at night (bending over after climbing stairs)... so I usually didn't. I look back and feel really silly.. I thought that I had crazy allergies.

[bjt22]

"Crawled around on your knees"....

I forgot...when my kids were all small and dropped a gazillion things on the floor, I would get down on my knees to pick everything up. Would go around the entire room that way, carrying a plastic bag with me. I spent a lot of time with my babies on the floor, too...guess intuitively I knew I couldn't drop them that way? Never could use a changing table.

[futurehope]

I never liked the heat and never liked to cook (standing still and doing it). I always knew I tired before others did but I managed to take naps and live a good life anyway.

P.S. I never will like the heat or like to cook.

[bjt22]

I never liked the heat and never liked to cook (standing still and doing it). I always knew I tired before others did but I managed to take naps and live a good life anyway.

P.S. I never will like the heat or like to cook.

I've always been heat intolerant, too. Back in the days when we all wanted to be like Farrah, tanning was quite necessary. Couldn't do it. I'd last about five minutes before getting sick and having to go back in the house.

[erik]

Ahh, Farrah... I can see why many emulated her. That is a rather cute story! ...for some reason I mostly dreamt of Genie!

Oh yeah. The heat intolerance has been there for a while... and certain seasons always felt better... but certainly not a hot summer.

"allergic to Home Depot and Lowes"... that's a good one! I think I'm allergic to most shopping, although those two are more worth the effort (a guy thing), and I now see why I've had some especially bad times waiting in lines and such.

[Maxine]

Ahhhh, yes----------------------always had the crossed legs when sitting, or legs tucked up under me.

Stores with fertilizer bother me, and home depot and lowes sometimes have it near the front door, and they also have some other chemical smells at times.

I was never one to deal with heat all that well, but certainly did better with it when I was younger, as I didn't have blood pooling back then that I know of. I'm guessing vascular tone has gotten much worse, and I don't tolerate a hot day for more then a few minutes before I feel like collapsing.

Maxine :0)

[janiedelite]

What a great topic!

I was still working as an RN a few years ago and noticed that my handwriting was deteriorating because of tremors. I bought fatter pens, not knowing that this is a common suggestion for folks with fine tremors. I was a recovery room nurse, so I stood by bedsides all day. I found myself rocking from foot to foot, or volunteering to walk and get items for other nurses. I just couldn't stand still.

[carinara]

Oh yes, there were a lot of things i did instinctivly right. I got diagnosed in 2007 but was sick since 2000. When i first discovered the wonderfull dinet web site, i cried when i read the ?what to avoid? section on it, because it was 100% what i have avoided automatically and instinctivly after so many years of suffering.

Like:

- Eating tiny little meals spreat all over the day

- I took showers sitting in the bath tup with cool water

- Most of the time i sat down whilest fixing my hair

- I stopped playing the flute because it made me soooooo very dizzy

- When i tried to lay in the sun in the back yard, i put a big ventilator next to me and sprayed myself with water to keep cool.

- I didnt drink alcohol anymore because it made me sick

- I stopped smoking because the nicotine made my HR go mad and triggered all kinds of symptoms

- I refused to take medicines because of my severe medication sensivity

- I sat down whenever i could and sometimes on the floor, if i had to stand for a minute i always moved my legs.

- Instinctivly i always put my knees up to my chest while i was eating because it would make me feel less dizzy

- When my daughter was little i started changing her diapers on the floor

- I started sleeping with my upper body elevated because otherwise i could feel my heartbeat all over the place

Iam sure there were many more things i did, but thats all i can think of at the moment.

Because nobody knew what was wrong with me, and doctors kept telling me that i was fine and nothing was wrong with me, i pushed myself and pushed myself so bad because i felt as if i just didnt try hard enough.

Everytime i had to do one of the above mentioned points i felt bad inside and weak and silly.

I bet you can relate how relieved i was when i finally discovered dinet, and read all this ?what to avoid? points on the dinet site, then found a doctor through dinet and then finally got a diagnosis

carinara

[rymac]

For years I knew caffeine and sugar made me sick. They would give me headaches but I would not give them up completely until I learned about dysautonomia. I experienced episodes of tachycardia for years and never thought much of it until I was diagnosed with MVP. Fumes from chemicals also made me very sick.

[ladyt]

hi...=)

i would gett cravings for lacrish (the blackish stuff that rais bloodpressure=)).. And so will my mom, spessialy when pregnant whit me... Now not so much, but my bloodpressure is not so low either..

I would usally prefer the salty to the sweet..

I have always been a floor person, feelt more comfortebal at that level .. And preferd to have my feet up, ore curled under me..

hated waiting in line etc.. preffered to walk than wait for the bus.. ust hanging around never been fun...

And I have always hated to pick stuff up from the floor, early i would use my feets insted of bending when possible...

[firewatcher]

* ALWAYS sit on my feet!

* I have showered at night since I could remember. Mornings don't work for me at all!

* Stopped even attempting to run or walk fast.

* Usually tended to bend over counters, carts, etc. and never stand completely still.

I have avoided fatty foods like the plague, but that was the "your-gallbladder-doesn't-work-for-22-years-diet."

[Janey]

- Salt always made me feel better

- I always sat cross legged

- I knew I wasn't a "runner" and so NEVER ran

- Lying down seemed to be the cure for everything (made me less anxious too)

- went into the mellow "inside yourself" state that overrides all anxiety and moodswings but makes you seem pre-occupied and unavailable to other people. Friends and family used to (and still do) call it "the vortex."

- I would always much rather sit down than stand up and irrationally hated those people who would tell me I needed to go and "stretch my legs" or "get some fresh air."

Great topic!!

[bizbiz]

While everyone stood around me, I would always find myself sitting, squating or leaning against something.

While grocery shopping, sometimes I would crouch down and 'pretend' to look at something at the bottom of the shelf just to give myself and my HR a break.

At work I had to talk to people all day, but if I started feeling breathless and dizzy I used to pretend I had a lot of work to do so I didnt have to talk to anyone.

Always felt better at night, really loved my sleep and hated mornings.

[HoudiniCat]

I almost always felt bad in heat/humidity, during my period, whilst drinking alcohol, taking hot showers, etc. If I was experiencing one of those things I would feel ?different?, two of them pretty lousy and three of them . . . well, three strikes and I?m out . . . literally out ? passed out on the floor. My whole life I?ve made a conscious effort to avoid having those occurrences overlap each other. Always craved salty snacks and guzzled water. Always shifted weight from leg to leg when having to stand (in the heat) for any length of time, always sat knee to chest. Pretty much all of the well-known counter-maneuvers, I've always done.

And Erik & Janey ? I can totally relate to the ?super-mellow? comment. My friends and family say I?m ?in the zone?. I always wondered why everyone doesn?t do this.

[potsgirl]

Before 'POTS' I:

~ Had extreme temp intolerance, avoided the heat and cold

~ Loved salty food, now I have the license to eat it!

~ Always crossed my legs while sitting

~ Could never stand still, always went from foot to foot, hated standing in line

~ Usually off-balance, would trip up stairs, etc

And more! Good topic, Eric.

Cheers,

Jana

[Maxine]

Another thing I wanted to add was that I would get tachycardia when I drank alcohol. In the younger years I could handle a fair amount of beer---(I like good imported beer, but drank mostly michelob beer. Now that I can barely handle a half of beer I have good imports, beer my son and his father in law make, or my brother in law makes. Once I was out with a guy, and we were laying together on the couch watching TV, and he said my heart was beating SO FAST! He said, "how can you stand it"! I told him I was used to it, but I really wasn't.

It was just easier to deal with when I was more relaxed from the alcohol buzz. If I got tachy otherwise it scared the you know what out of me. Alcohol also dehydrates you, and this will make POTS worse. I remember drinking copious amounts of water, juice, or whatever I could get my hands on the day after drinking any kind of alcohol.

I'm assuming my blood vessels dilated more, as alcohol is a vasodilator. I didn't have the tachycardia spells consistantly until 1990. I had a few months of these spells in late 1981 soon after my son was born-----and back then they said I had MVP. YEars later they said I don't have MVP. In late 2000 I had the BIG CRASH, and have since spiraled into what you see below in my signature line.

I don't remember craving salt back then. A weird thing I remember is craving BLTs all the time. I rarely eat them now becaue bacon is so bad for you.

Now that I have salted my food more due to the POTS, I have grown accustomed to the taste, and miss it on many foods if it's not available at family picnics, parties, ect.

Maxine :0)

[Kyler]

I felt really really guilty when I first started reading about POTS because my son had so many compensatory habits that we didn't recognize. His symptoms started when he was 7 and we didn't know.

He is a huge strapping young boy - 5'9 and 165lbs but he fot 'F''s in Gym class for the last 4 years and we told him that he didn't try hard enough.

I called him wimpy when he said that it was too hot to go outside and I lectured him about my childhood outside in VA. Beach and how i survived. When he did go out in the summer he would sit and make a mud puddle with the hose and drive his matchbox cars thru it for an hour and come in and tell me he was too hot. He limited himself big time.

He wiggled non stop in school from first grade (7 yrs. old) on and he drove his teachers crazy-always moving. He would get good grades with ease but they thought that he never was listening. It got really bad last year and his grades plumeted so we put him on concerta for ADHD which made it worse until finally we figured it out.

In the last year he would always sit in a chair and lean foreward with his elbows on his knees or stand with his legs propped or crossed.

He drank like he was in a constant state of dehydration-we joked around and said he had a "drinking problem" for years.

From age 7-9 he would ASK if he could go to bed at 7pm several times/ week. I took him to his PCP and they said that he was "just growing"

He was grounded almost the entire school year last year for "forgetting" EVERYTHING- I didn't know about POTS or brainfog.

It all makes sense now. I wish that every child could be screened for this at a certain age in school.

[erik]

Lots of fun and insightful anecdotes here. Thank you all.

While grocery shopping, sometimes I would crouch down and 'pretend' to look at something at the bottom of the shelf just to give myself and my HR a break.

Nice trick! I've spent a lot of time doing that too! On one occasion, I thought I was pulling it off and fooling everyone, when a store employee saw me make my labored transition to upright. She gave me a "knowing" look and told me she gets the same thing all the time. I doubt she knew about POTS either... but she sure spotted me easily!

There's another time 10 years ago now, touring an empty building with a new boss. I got so bad that I suddenly sat myself down on the floor, crossed my legs and pretended to be diagramming something... just so I wouldn't black out and so I could think half-way straight and settle my mind! I tend to get deja or jamais vu and eerie anxious feelings (unless I managed to sit down She didn't react badly and nobody ever said anything, but I withdrew myself from that job shortly thereafter, fearing I couldn't be reliable for them, and just returned to a job with a "known routine" where I could get by. Missed opportunity.

Alcohol is a funny one. I don't drink at all for now, but I always had mixed response to alcohol... it seems it can help me but it easily bites back. This is an obvious "no-no" but for some reason I was able to exercise unusually well on alcohol... provided I kept the water flowing to compensate! This was my "naughtiest" self-treatment Might be something to it physiologically... I might have to see if a low-dose benzo is similar.

Salt. Ahh yes... nice to have a "doctor's excuse" to pour on the salt! I love it!

[erik]

I felt really really guilty when I first started reading about POTS because my son had so many compensatory habits that we didn't recognize.

... ...

It all makes sense now. I wish that every child could be screened for this at a certain age in school.

Frustrating and heartbreaking... it's such an obscure thing until AFTER one knows about it. So good that its now clearer what is going on and can be addressed better.

Now that you mention it... measuring heart rate and blood pressure upon standing isn't risky or difficult. I remember getting weird stuff like hearing tests in public school... it seems totally realistic that they could do a basic screening (assuming doing so doesn't open them up to dreaded liability issues). Certainly worth some solid "awareness" efforts.

[bjt22]

I felt really really guilty when I first started reading about POTS because my son had so many compensatory habits that we didn't recognize.

... ...

It all makes sense now. I wish that every child could be screened for this at a certain age in school.

Frustrating and heartbreaking... it's such an obscure thing until AFTER one knows about it. So good that its now clearer what is going on and can be addressed better.

Now that you mention it... measuring heart rate and blood pressure upon standing isn't risky or difficult. I remember getting weird stuff like hearing tests in public school... it seems totally realistic that they could do a basic screening (assuming doing so doesn't open them up to dreaded liability issues). Certainly worth some solid "awareness" efforts.

Back 25 years ago, my heart rate was often through the roof. My then-doctor often caught this but had no explanation. His thoughts on the matter? "If your heart is beating twice as fast as it should, it might only last half as long as it should". Yeah.

[kayjay]

Erik, I also used to feel better drinking alcohol. I had mixed feelings about it and didn't think that is was right (my hubby doesn't drink and my one grandmother was an alcoholic) so I worried about it.... but it helped me function the next day. I would drink a beer (or 2) or wine when I got really desperate to "slow down" then I could function enough to make dinner. If I needed sleep I would drink a little more before bed and have some emergenC packets in water. I don't care for wine so often I would put a little wine in a huge glass of water. I was "sneaky" about if b/c I have children and I never want to set a bad example for them. I don't drink anything now b/c I am able to sleep with the Klonopin. Also I had to take my husband's grandmother for surgery one day. I didn't have a diagnosis and I thought I was having allergy problems. I took benedryl all day and felt pretty ok! It again slowed me down.... Anyway be undiagnosed for at least a decade I was compensating every day!!! This was a great topic so I had to write in twice! Kari