Accused Of Being Drunk/ On Drugs?

[JenJen]

There have been so many times when my mother/sister/friends/boss have asked me if i was drunk or on drugs because of my POTS symptoms. I fell over once and the person who helped me up smelled my breath! I don't know if anyone else has experienced this, but my pupils tend to dilate on their own for no reason,which freaks my mother out. She is always telling me to quit taking drugs (i don't take drugs). "Oh really! You're high i can tell!" It's funny because she actually makes me paranoid when she says stuff like that.

Stumbling around in the grocery store, brain fog, big pupils, sweating for no apparent reason, suddenly crawling on my knees, lying in bed for hours, tremors, or whatever the indignity, it seems to others that i need rehab. lol. I swear if i hadn't gotten this diagnosis i might have faced an intervention. Ha ha! It's really embarrassing to begin with, then to have to explain myself is even worse, especially in the decade before i was diagnosed when i had no idea what was wrong with me.

anyhow,I'm finding a great deal of humor in all of this in the 9 days since i found out what all this was about. Do you have any funny/embarrassing POTS stories you're willing to share?

[HopeSprings]

No stories to share, but this has been a fear of mine - that people will think I'm drunk. I have asked family members if I appear normal because as off as I feel, I can't believe it doesn't show. They always say I look, sound and appear normal - which is good, but also bad because then it's hard for people to believe there is something wrong. The only person who sees something is my mother - she says she can tell by my eyes that something isn't right. They look out of focus or something. I guess a mother would know. Sorry - I know this thread was supposed to be about funny stories!

[JenJen]

Sorry - I know this thread was supposed to be about funny stories!

don't apologize. this is all making light of a pretty serious subject. don't feel bad, all comments are welcome.

[kclynn]

My son's high school friend have made those comments. Also, I put in writing to all the teachers and personnel that there may be times when he may appear to be intoxicated and that in fact it is due to lack of oxygen to his brain. We have had no problems as a result.

[Christy_D]

I'm sorry to say, but I questioned my daughter about drugs and drinking before my son got his diagnosis. She is much milder, but when she fainted 3 times just standing up and her pupils are frequently fully dilated I didn't know what was going on. Now we know she has mild POTS, not officially diagnosed, and she won't let me live it down...She loves to say 'Told you so!'

So, don't be too hard on those people, I was just looking for a reasonable explanation. And if it would have been drugs, etc... I didn't just want to turn a blinds eye to it.

[AllAboutPeace]

I remember when the doc first mentioned "POT" syndrome and jokingly prescribed "potato chips" (lots of salt). My friends who are fans of marijuana agreed that potato chips (munchies) should be the perfect prescription for something called POT syndrome!

Most hillarious sure - cure for POTS recommended by my well meaning father in law "if you would just eat some chicken..." He is totally serious and determined that this will fix me. I eat a vegetarian diet.

Best success in explaining to my friends what its like for me to go out somewhere, with POTS. I ask them to remember what it was like when they were a kid playing musical chairs. As you get up out of your chair, your heart is racing and you are eagerly and anxiously looking for that next place you are going to sit down. If the music stops and you don't have a place to sit, you are out of the game (or in our case on the floor). Of course the crazy thing is that there is no one else playing and all of this is playing out internally. I rarely go out, but I did have to go to a funeral recently and my friends were all very accommodating in finding seats for me so I didn't have to stand at all.

Thanks for posting this thread - I needed to lighten my mood!

[puppylove]

I wasn't feeling well on Christmas day but I went to my grandparents house any way because all my aunts uncles and cousins would be there. Anyway we have such a big family all the kids pass the presents out to everybody. My grandma was like "okay anyone who is going to pass out you can pass out now! Okay everybody let's pass out!" Everybody kind of glanced at me and started laughing.

[peregrine]

I haven't been accused of drinking/drug use yet, but I have this concern that when I fly someplace (which I do from time to time) I will have increased security screening because I'm sweaty, pale, shaking, etc (plus the fact that I opt out of advanced imaging technology, so am already having a patdown). I know profile-based security looks for people who look nervous, but I swear I'm innocent of anything besides having a poorly functioning ANS :^)

My best explanation for my spaciness, which is something any doctor will appreciate: "You know when you're sitting in a seminar, and all of a sudden you realize you were kind of not paying attention, the speaker is several slides ahead of where you last noticed, and you have no clue what happened in the interim? It's like that! But all the time." Everyone gets it (both in my field, science, and doctors).

My favorite "tweaking healthy people full of advice technique": The person asks what's wrong, you explain that you get lightheaded standing up and can pass out. They suggest that you are dehydrated and need to drink more! You tell them how much water you drink every day. They shut up. (hopefully they continue not suggesting anything)

[Elfie]

I often have this issue. When I am symptomatic I often have people treat me like I am a special needs individual (I had a cashier pat me on my head like a child once) or like I am drunk or on drugs.

[jenglynn]

WAAAAAY before I got my first "POTS" diagnosis last August... (I am 37) I have been asked about my pupils. They are always fully dilated- and one is bigger than the other... so since I was a teenager or even younger people have always commented on it before I even knew that it was a sign of being drunk or on drugs. I remember staring in the mirror at my eyes and wondering what the big deal is???? LOL. I have blue eyes, although the joke in my family is that you can't tell- they are always black and no one really knows the true color blue of them.

My daughter, who is 8, was listening to a friend of ours from church who was visiting (who just HAPPENS to be a police officer) telling a story about an arrest of a drunk who passed out on the hood of their car and wouldn't wake up... She asked why he passed out. He said "Oh, because he drank too much.." She said.. "Yeah... Mommy passes out ALL the time... and she drinks A LOT!!!!" Thanks Honey I was quick to add... Yeah, a lot of Gatorade and water... We may as well smile about it because it is what it is... and some of our symtpoms are SOOOO odd and seemingly unrelated to one another that it is JUST okay to laugh about it sometimes. Thanks for bringing this up... I had forgotten about the passing out story... until this thread... and it made me giggle all over again....

Jen

[ramakentesh]

The difference is that being drunk on or drugs would presumably be fun - POTS doesnt feel fun LOL

[Maiysa]

I have autonomic neuropathy and orthostatic intolerance and an occasional non spinal dysreflexia episode. The last time the paramedics were here, they said, Ma'me, how much have you been drinking? Well, whenever my doc from mayo calls that's his first question, how much have you been drinking.....he means water. So in my delirious episode I said....A lot! And then they asked to see all of my prescriptions, which I don't have any because I can't take any. My husband tried to explain to them that I have dysautonomia. They were looking around the bathroom and looking at my husband suspiciously and then one paramedic yelled out, hey, this is a typical reaction to her disorder. Then they all started taking me seriously and taking blood pressure. So ridiculous. I want to wear a t-shirt that says, I wish I was drunk!

[firewatcher]

I was asked several times if I was on cocaine because of the size of my pupils. I'm guessing that it gives you really big pupils because I've never taken it! I even had one guy ask if I had "any more for him?" He did not believe that I was not "on" anything. I've also had many questions about why I "shake so much." They get really apologetic when I tell them I have a tremor!

[ramakentesh]

LOL.

[ramakentesh]

non spinal dysreflexia episode

if you dont mind, can you explain to us what this is and what symptoms occur. thanks.

[ramakentesh]

People dont seem to think im on drugs when my pupils are two different sizes LOL

[Elfie]

Rama-- I think she is reffering to autonomic dysreflexia-- it is easy to look up, a common issue amongst high paraplegics and quadreplegics or those that have spinal cord injury.

[Maiysa]

Sure Rama,

I have non-spinal cord injury dysreflexia, so mine isn't exactly the same. The neurologist calls it autonomic dysreflexia. It took years to diagnose. But anything can make it occur, usually a fever, a migraine, female time of the month, car sickness is one of my biggest triggers or medicine or something as simple as using the restroom. I start to feel the most intense heat all over and I can look like I just stepped out of the shower in a matter of ten seconds due to sweating PROFUSELY. Then I don't know where I am, I can't move my upper limbs, talk or do anything. I'm basically a wet noodle and I turn grey blue, and I start vomiting and have a bathroom issue immediately and sometimes when my blood pressure goes into the 30's I will have a seizure. I guess my brain is getting the wrong signal and my blood pressure shoots extremely high so my body over reacts causing my blood pressure to drop too low. All I know is that it's scary!! My family puts me in a tub of cold water and it usually stops it. I guess it constricts the blood vessels raising my blood pressure back up. I'm sure some people on here have this and don't even know it. It took almost 25 years of these to figure out what they were. It happened in the hospital and I was going in and out of consciousness and they were calling code blue and I was surrounded by a lot of people and it was chaos. It's the yuckiest thing ever. The next day they told me I was very close to death, but the next day I'm usually good as new. Bizarre situation. Now, I have to go watch a happy movie. haha.

[houswoea]

Haha, some ERs have accused me of being on drugs, they ALWAYS test me for them. When I was really sick, I almost walking out of dorm room without a shirt on, two separate times!! Also, one time I ended up somehow sitting in the shower with my pants on but no shirt, and I didn't even know how I got there. Good times. freaked the heck out of my roommate.

[puppylove]

Just remembered another funny one. I was having a terrible GI flare and finally just decided to go to the ER. I told them my stomach hurt so bad and it was so bloated which is normal for me. Also told them I had POTS. After some tests they made my Mom leave the room and I was like ok what's going on... Two nurses came in and asked me if I was pregnant! I almost started laughing and I said no I'm fifteen definitely not pregnant. They acted all suspicious and then made me take a test. Oh good grief! I don't go to the ER anymore unless I'm seriously dehydrated.

[Yolaclover]

No, but it is one of my biggest fears!