Bella127

Hi Everyone!

It has been forever since I've posted! I have an idea that I want to share with everyone. The main thing is - I don't want all of us living in a depressing "POTS hole" -- it's time to dig ourselves out. I would love to have everyone post funny things that have happened because of/while having/in dealing with a chronic illness (not that it's fun or funny to have one - or that any of the symptoms are of that nature, trust me) -- whether it be an experience you had, telling a story, a fitting quote, funny reflections/ramblings, the stupidity of an ignorant doctor, your smark remarks back or daily struggles. In other words, things that we can all understand and relate to - in a positive light - as people who have a chronic illness.

It can be a song, a quote, a remark, anything! I think it would just be a fun way to discover that we have a lot more to laugh about than cry about (most of the time). I'm sick of all the books I've seen on chronic illness - the author's name might as well have been "Negative Nancy"

As Melissa (Hi, Melissa! ) pointed out to me, the "You know you have dysautonomia when" posts are a GREAT fit for this! Also, I think I have seen something before on the worst jobs for people suffering from dysautonomia. I would just like to get all of these types of things together somehow, while collecting more. Just think of how could be helped just by reading...those who really need a lift, those who are just getting diagnosed, those who are struggling at the moment...all of us.

That is the main point behind my post - so please, everyone, post away! We'll see what happens!

Here's a little something to start us off:

"Dizzy

I'm so dizzy, my head is spinnin'

Like a whirlpool, it never ends..."

(Everyone knows that song!)

I will post one of my (many) funny stories a little bit later! Thanks everyone!

*Chrissy

p.s. I'm not saying we should all walk around making fun of ourselves when our legs turn purple (although, I do, ) and laughing it off every time we faint. It's all a balance -- of course, having an illness isn't funny, nor are the symptoms. But I'm sure EVERYONE can think of a lot of things that have happened that you might not have thought as funny at the time - but looking back, probably a sense of humor helps put things in perspective.

If you would like to know how this idea came about, or anything else, feel free to private message or email me...but all the important stuff is listed above!

Steph!!

I was going to email you and ask you if you started your Procrit yet!!!!

I am SO happy that you have it back, keep us updated!!!!

YAY !!!!

*ChRiSsY*

AWWWWW!! you guys!!

I was just talking to my mom, and she told me I might want to check out the site .. Steph, I can't believe you remembered when I moved in .. haha *I* barely was able to remember when I moved in (was it yesterday .. or no friday .. uh ... ) haha!

thank you all soo much!!! now for the (long) update:

Yes, my whole family did come to help move everything around (mom, dad, 2 brothers!). Everything went really well!! My dorm is very .. very quiet .. (good for sleeping and studying!!) but now not so quiet because I'm in it .. haha. BUT .. I seem to be the only one on the phone, with my door open (if it's not too hot) and my music cranked up. haha .. but that's ok. I even left little messages on everyone's dry erase boards today .. "good luck with first day of classes " and only a few people said thank you .. boo. I'm sure it will get easier, everyone is in a weird place right now and probably very nervous!

But that's not a big deal .. I'm just soo excited to be here, at school!! good news is I have friends in other dorms that I go and visit and they are a lil busier, so it's easier to meet people!!

now for all the POTSy related stuff! Today was my very first day of classes. I had 2 - first one at 3pm (Psych 261- School & Society, and at 4:30 - Ed 253- Child Development), in different buildings - first one on the first floor .. second class across the (kinda big) parking lot and to the 3rd floor! ouch. that one you have to go up steps from the 1st to the 2nd .. then catch an elevator at the 2nd to get to the 3rd. .. kinda confusing. that kinda got me a lil winded, I did have to stop and kinda calm down before goin into class. No biggie! I am SO excited to be in the Child Development class .. get THIS .. for my second paper, I get to watch TWO HOURS of children's TV and write about it! The first hour has to be educational (Sesame Street, Dora the Explorer!!) and the second hour just a silly cartoon. Ha! I looove my major.

I sometimes lay my clothes out, but it's pretty easy with the wardrobes -- you can tell what's where, and I usually know what I want to wear in the morning now. I definitely dress in layers and stay COOL!!

I did get a good start with my morning! I take my showers late at night (not too late, between 9 and 10 usually) and make sure they are basically COLD showers. Ooo speaking of showers .. i have a GREAT story for all of you! ..

They have a shower for a handicapped girl there, so she has a bench she can actually sit in while she's IN the shower (the others have benches in the little part that you step into before you get to the actual shower where you pull the curtain over) and since she wasn't moved in yet, I used that the other day. I figured it would be soo much easier b/c I could put my shampoo/conditioner and soap right in front of me and just sit on the bench.

It WAS easier -- BAD part is .. I kinda flooded the bathroom!! The floor where the water drains is on a slant so the girl can get her wheelchair up it .. except it must not have been draining properly because I got parts of the floor in 1/2 inch deep water!! I swear I wasn't in there long -- I swear!! lol.

But I thought of you all of you guys when I did that .. "What would they think right now if they all saw me on the news - 'POTS Girl Drowns Half Of JCU Campus After Shower Incident' " It ended up being ok .. I tried cleanin it up (bad idea post-shower) but then I checked back later and it had evaporated. So .. yay!

My A/C is on HIGH .. and I have a floor fan. It's FREEZING, it's GREAT.

Oh, and you should SEE my snacks .. does anything NOT have salt??? I have a bin full of salty stuff .. and my refrigerator is filled with the same! I eat a GOOD breakfast before I leave because I don't feel rushed. This morning I had one of those dole fruitcups, a gronola bar, with some pretzels and an ICE COLD Powerade. Then dinner time I made myself a tuna fish sandwich (I'm so used to putting salt on food that I put some on my tuna! haha it was actually really good) with .. pretzels (again! i love 'um!).

So all in all everything is going really well!! I had an appt. this afternoon w/Disability Services, and Allison (who is in charge) finished typing up my letter for my professors while I was sitting there with her. So 2 of those are handed out, 2 more to go!

And the WEIRDEST thing .. I went to talk to my first professor so I could give her my letter .. she kind of read through it and I just told her it was a 'mild heart problem'. (The letter had nothing pertaining to POTS, it only listed the accomodations I would be needing) Then she said something like, "Ooh okay .. I understand, I had someone just last year with some type of heart problem. He used to faint though, and I know his blood pressure went very low."

My jaw dropped! I told her that that sounded a lot like what I have, but he never told her the name for it or else she said she would have remembered. I just found that a crazy coincidence that I didn't say anything about POTS specifically, and neither did the letter, and someone else had something so similiar!

And maybe the girls in my dorm aren't too talkative, but I have met some guys! They are SO nice (and soo cute Steph! ) and a lil group of them stopped by my room today to take me to dinner with them but I was studying in the lounge so I had no idea (what is WRONG with me?!? haha) .. so they went on their way.

It's soo nice because of those boards outside our doors where people can leave us messages -- you always know if someone stopped by when you weren't there. So I saw a message on my board today, "WOW .. U ARE HOT", and these other guys told me it was the 3rd floor --football team! Tell me that's not crazy. It sounds sooo stupid, but that just makes me feel better and so much more normal .. even that little bit of 'attention' from guys helps a lil .. after being stuck feeling totally 'out of the loop' from everyone .. for so long when I was sick .. it's just a feeling of "YES! This is PAYBACKS for all those times " -- and definitely a push right back into the social scene. Since they don't even know me, it kind of reminded me that I am not just a girl with POTS -- I'm a regular college girl. so maybe I will be having a better year than I even thought -- We'll see! Sorry for the long update, just wanted everyone to know that everything is going a-okay!

I am drinking lots, salting everything, and not fainting!

Take CARE of yourselves everyone!! Sunfish PLEASE let me know how school is going for you !!! Good luck with your classes!

Thank you again everyone for the messages, and Steph for remembering !!

Hi Everyone!!

Just thought I'd leave a little update on the dorm situation!

We went earlier today to bring most of my stuff to my dorm room .. aaand .. it's only a few doors away from the exit, and also a few doors away from the showers We also had really close parking, probably 25 ft. from the door, didn't have to carry things far ..

Also, I was SOOO happy when I walked in because the whole heat problem is FIXED!!! It is cool enough for me to deal with and not too cold for everyone else .. YAYYYY!

There was a separate A/C in there, my brother hooked it up .. and we are leaving it running (Just came back home now to pick up the rest of my things) so it will be nice and COLD when I come back .. it has settings for low/high (hmm wonder which one it'll be on ALL the time .. )

It's so funny, b/c if you go outside and look at all the first floor windows, mine is the ONLY one with this huge round white hose sticking out of it for the A/C .. Guess my room will never be hard to find ..

I just feel so relieved that it is all working out! So Yay! Just wanted to share it with everyone!

Hope you're all feeling well

GOOO to that appointment!!

I had an appointment to see just Beverly (the NP) in June. She came in and was very, VERY understanding as far as the POTS symptoms .. just feeling kind of "blah" .. and all the normal POTSy stuff ... SUCH a nice lady!

She will discuss everything with you, as far as treatment options, her opinion, what she thinks Dr. Grubb will think, "plan of action" etc. Then Dr. Grubb came in with us at the end of the appointment for about 15 min. or so and reviewed everything, of course adding in his own point of view on it.

It was great to go and see her, because we all know Dr. Grubb hasn't been his best, and in going through her first it also feels like we're making it easier on him. You get just as much info as you need from him, because he will ALWAYS take the time to talk and answer your questions.

All in all, Beverly does the reviewing of how you've been, relates it to Dr. Grubb, he comes in and looks over her notes, and talks with you. In any case, either Dr. Grubb or Beverly can both write out prescriptions or whatever is needed ..

I am about 3 hours away from Dr. Grubb's office, so I guess it also depends on where you are coming from ..

But I would go for it, especially if you need to get some new meds or you just need a check up with him!

Goood Luck!

*ChRiSsY*

Here's a thought ..

I posted something a little bit similar to this a few days ago, but I have been wondering about something. My eyes burn a lot and are always red (the other post explains in-depth) and I am wondering ..

Is the whole "bloodshot" look caused b/c of POTS .. being that my blood vessels are not constricted enough and so they appear thicker/wider in the eyes -- causing them to look/be bloodshot?

Does anyone else have the problem as far as their eyes just being red all the time?

Wonder if this could be why .. .

poohbear-

thank you SO much. I will definitely look into this !!

*ChRiSsY*

Hi everyone,

Just wanted to share a quick story with you all, and I thought many of you might have similar ones. This one probably happened almost 2 years ago.

I was in the parking lot of the store with my best friend, and I really try not to use my handicapped placard. But it was a hot day, and all the other spaces were definitely too far for me to walk without feeling sick.

So, I parked in one of the handicapped spots, put the ticket up, and the 2 of us (one 18 yr old, one 20 yr old) got out of the car. Across from me, also in a handicapped spot, I noticed an older woman glaring at us -- because we both look perfectly healthy I'm sure.

A while later, we were done at the store, and I come back to find A HANDWRITTEN NOTE ON MY WINDSHIELD!!!! It went something like this:

" You stole this from an old handicapped person!! How DARE you! " and probably a few other choice words .. about teenagers in society these days, I don't even remember anymore

But boy, what I would have gone and said to her if she was still sitting there in her car!!! It probably would have been something like "Excuse me, I saw your note, and see this bracelet I'm wearing? It's my medical bracelet. I have a heart condition that makes walking very difficult for me, and my heart is actually working 3x harder than yours is just so I can stand here and talk to you right now" Grrrr!!

Just some more venting -- but that one really takes the cake .. .

Anyone else had an experience like this? (Even though I hope not! )

Thanks everyone!

I will take these suggestions to the dr. ..

dizzygirl- my eyes look glassy too and yes dull in a way .. I know exactly what you're talking about! and i do have one of those cool eye masks .. they do help when they are cold, only get annoying when you have something strapped on your head with velcro while you try to sleep thank you for the reply!

poohbear- with checking the hormones, I did have blood tests within the past couple years that didn't suggest anything wrong with my thyroid, etc. .. is it just a routin blood test to check hormones?

momofpreciousboy-

i also have a kind of "pressure" when i look around and move my eyes .. crazy symptoms ..

rita- i know that i do have a small cyst, I think on the right side of my sinuses. My pediatrician said it was the biggest one he ever saw! (I'll do anything to get a compliment .. ) But I went to an allergist who did not think it was causing symptoms or doing any significant damage. (He even looked up my nose with the little telescope thingy .. ouch) He also said I have a slightly deviated septum, but it isn't severe enough to do anything about.

Thanks everyone, and I will look into all of these meds. and see what the dr. says!

Hmm .. still wondering if the bloodshot eyes are caused by our 'lazy' blood vessels not being constricted ??

Jennifer,

I have always wondered the same thing .. all of the doctors say to keep yourself conditioned, go swimming (right, with the heat all around the pool, so I can pass out and then slip on the tile floor and hit my head??? ) lift weights, walk ..

I understand where they are coming from as I'm sure you do too .. but most of the time anymore I am SOOO tired by the time I am done with my shower, then doing a few things during the day (ex- tidying up my room for a few minutes) that I feel like I've gotten all the exercise I need

I agree with what everyone else has said, just that in the terms of "exercise" they will usually give you some stretches to do to strengthen your muscles, that type of thing.

I went through some physical therapy in my early Potsy days and I would have little worksheets of exercises to do (sit on a chair, lift this leg, now do a backflip .. ) that sort of thing. You will slowly build up your legs to have more muscle tone.

I remember when I was soo sick at first with POTS, sitting on the couch, I used to go for "walks" with my brothers/dad/mom .. whoever wanted to take me around the house. Haha, it definitely worked in strengthening my muscles! Which reminds me -- one time my brother came to help me from the couch in the family room, and was taking me into the den .. another ROOOM!!! Wow, I felt like I hadn't moved for days, and found myself saying, "Yay, a field trip!" while holding onto him shuffling off in my pajamas and slippers

So start SMALL, every bit is worth it, even if it doesn't feel like it. If my family didn't make me get up and at least walk around I don't think I would have kept any muscle tone.

It is hard at first, but remember it will help you in the long run. I used to even do exercises with my arms with 2 lb weights or those little wrist weights. Find what works for you, and use that. Go slow!

Good luck!

*ChRiSsY*

Hi India!!

I am currently on .10 mg florinef 2x/day. I have been on that dosage for the past 3 years or so .. no problems with it whatsoever. I think it keeps my BP up (haven't passed out in 3 years or so). Even though I have been having problems with low energy and a generally more "blah" feeling than in the past, I don't think it's at all due to florinef. The biggest thing I've noticed is a little bloated-ness, but that's it.

As long as you start small with your Dr. (maybe he will prescribe 1/2 pill at first?) I don't think you will have any major problems, although how a medicine affects one person can be different for another.

Hope this helps

*ChRiSsY*

carmen- I do think that freshman year especially will be an adjustment, and I'm really not a partier -- I love to go out, just in the sense that I don't drink (thank goodness -can you imagine adding alcohol to the symptoms we already have?? lord, look out! .. besides the fact that when I am dizzy I am pretty sure I understand what it is like to be drunk .. lol )

I'm sure I will be posting more and more on the site because I will need all the support I can get to get through my first year!

thank you for the well wishes!

melissa!! - your post made me laugh! the whole part about passing out and people thinking you're drunk .. last summer (yes, its story time!! ) my best friend and I went dancing downtown (I was doing a lot better last yr than I am now) and it got so PACKED to where you couldn't move. Well, little by little I started getting lightheaded, and really hot .. and the last thing I remember is her saying "Chris?? Omigod someone help me grab her!" and just me kinda tipping riiight over!

Then all I know is that her and a couple other people literally held me up and carried me out to the car, but I do remember snippets of people asking if I was drunk, and opening my eyes to see the bouncer say something to my best friend about my being drunk, and then her firing back, "She's not DRUNK, she has a HEART PROBLEM, A**!" (Leave that to us fiery Italians ) And as I've been told, he then apologized and offered help ..

Also, I'm glad you understand .. what with your parking problem and all! It is so frustrating - sometimes it feels like they don't understand that we NEED these accomodations because we cannot function otherwise. So far, JCU has been pretty good, so I'm hoping this was just a little bump in the road ...

I would LOVE to meet you sometime! I do have my email address posted, PLEASE feel free to write ( I'm still getting used to the site so e-mail me first b/c I probably won't be able to find your address on here .. )

Good luck with school, hopefully we'll talk soon, keep me posted!

Hi~!

I have not been on any of the medicines you mentioned, just wanted to throw in my 2 cents

Have you tried/heard of Florinef? I have been on that for probably the past 3 years .. I guess you could say it is my "base" medicine - whatever other medication I try I have always stayed on Florinef. It seemed to have been working well, no major side effects for me. If nothing else, it's been keeping my BP up and I haven't passed out in about 3 years. Maybe ask your doc or get another opinion if you are not getting the answers you need?

But like you, I am also in the process of trying different meds., because of my low energy! I still feel tired and have fatigue all the time, or at least more than I used to .. last year I was doing soo well. I was on Proamatine the past few weeks for my energy, but it doesn't seem to be helping .. in fact, I think it may be causing acne! go figure, I feel like I'm back in the 7th grade, haha. (has anyone else had problems w/proamatine and acne?? or maybe its just stress?)

In regards to normal POTS treatment .. have you purchased support hose? I think thos helped when I was at my worst, to get the blood pumping back up again. Also SALT, salt, salt!! Hopefully everyone else will have some insight as well.

I hope you find something to help you!

*ChRiSsY*

Julie,

Take a look at my post from today about my dorm situation .. and you definitely won't feel alone with the whole "heat issue" anymore!!

I get so incredibly sick in the heat. This summer has been pretty bad -- haven't really gone out to do much at all, and even on some days I'll get out of the house by 2 pm (after taking a shower and recovering from the taking of my shower .. ) and once we get to the store .. the whole "parking lot" deal just kills me! I feel tired like I can't hold myself up, or sometimes like I'm going to hyperventilate almost .. even though I know that's now what's going on. When I get really hot, while I'm cooling down (usually after being in the parking lot, walking back to the car) I'll start to cry sometimes only because I think of everything going on in our bodies between the extreme heat to the extreme cold. Crazy what it does to us, isn't it?

The other day visiting the dorms was a HUUUGE wake-up call for me as to how badly the heat really affects all of us. It's so easy when you're not IN the heat (in your nice air-conditioned room!!) to think, "oh, it won't be that bad .. I can handle it!" BUT .. the second you step into it .. *BAM* it hits you like a freight train !!!!!

I can't imagine being "normal" - most of my friends are freeze babies and looove the 90 degree weather .. and tanning beds??!?! Yeah RIGHT! I hate the sun!!! Which is probably why I'm so ghostly pale .. .

The heat intolerance is definitely one main symptom I can't get past ...

Hope this helps

Hi Everybody.

Just wanted to update on my "going away to school" situation. We were just up at John Carroll for the transfer picnic this week.

We had already made arrangements as far as the dorm situation: benches are already in the showers, I have my own A/C in my room, plus an adjusted thermostat in the lobby that they installed for me. The Disabilities office is well aware of my whole situation, as are many others we have worked with throughout this process.

Well, after the picnic, they did a tour for the transfers, and luckily their dorm of choice to stop at ended up being mine.. yay!

BUT .. as soon as I walked in it was SOOOO hot! I already had a headache that day, but the back of my head just started pounding really hard, got "hot flashes", I could feel my heart pounding out of my chest at a mile a minute !!! It just felt horrible. I felt like I was completely out of it I know you all can relate.

My dad and brother did notice that it was "hotter than normal room temperature" in there, but it didn't affect them. My mom and I were ready to fall over together -- it felt like a sauna!! My little brother described it as being "that feeling you get in the summer when you leave our (freezing) cold house and then walk outside and get a blast of summer heat - you have to catch your breath for a minute" - and that's how I felt.

Needless to say, I got frustrated because they were supposed to have fixed the problem of the excessive heat in that lobby (funny, because everyone who lives there says that the heat has ALWAYS been an issue .. ) I was getting nervous about not being able to function -- thinking "how am I possibly going to live here if I have to hibernate in my room?? " because I move in (to that building!!) in 2 days - on FRIDAY !!

Right when we got home, my parents e-mailed my advisor for Disabilities, as well as a really nice lady we've been working with for transfers. The very next morning, they both wrote back apologizing, and saying that the problem would be fixed by Friday but most likely earlier than that.

I really hope everything is fixed by then .. or else I'll be camping out at home the first few days!

Just wanted to vent a little bit ..

Wish me luck in that this all gets fixed for good ...

Case, how fun!! I will be at JCU - not far!

Have a *great* first day !!

Keep us all updated on everything!

Good Luck, and definitely go to Little Italy - for the food, and the guys

~*ChRiSsY*~

Hi Everyone,

Thanks for everyone else who welcomed me to the forum!

For as long as I can remember now, (probably around the same time I got POTS) I have been having a lot of problems with my eyes. My eyes get very bloodshot ( I look like a druggie .. even though I am .. just not *that* kind ), and they burn and ache a lot (all around my eye sockets feel almost 'sore'). A lot of times I can't even bear to put my contacts in because of how bad my eyes feel. I have also gone weeks without contacts, just my good ol' glasses, and even then they hurt and are bloodshot - so we know the contacts aren't the culprit.

This especially seems to happen in the morning right when I am waking up, and I almost feel like that is the reason I sleep so much or have a hard time getting up - because it just feels better when my eyes are closed. It makes me feel VERY tired and if I didn't have this anymore, I feel like I might do better with my mornings! Does anyone else have this problem?

Also when I wake up I feel pressure and congestion all around my eyes and on my sinuses. I am on Singulair and that does seem to help as far as the stuffiness. I also use a saline nose spray which clears me up, but the symptoms return. It almost always feels like I am waking up with a sinus infection every day! Do all us Potsy people have sinus problems?

I am going to my eye dr. and she thinks its a combo of maybe POTS and allergies (I am allergic to trees and dust -we have taken all the precautions at home that we can as far as hypo-allergenic pillows, minimizing dust, etc.) and prescribed eye drops for me to use 3x a day and also some gel drops to put in at night. The drops always help temporarily (maybe for 15 minutes or so) and soothe the burning, but then they wear off. Everything as far as my eyes themselves are perfectly healthy, no scratches on the cornea, no infection etc., the only thing she noticed is that they can be somewhat dry. She really doesn't know what could be causing the burning (they don't itch) and redness. She referred me to another doctor that is a specialist.

** One thing that I just started wondering (and this might be a longshot) .. since with POTS our blood vessels are not as constricted as they should be and that is why we have a lot of our symptoms, could the bloodshot eyes be caused by the blood vessels in my eyes being a little bit lax .. and therefore they appear bigger/thicker and my eyes look bloodshot? **

I asked my eye dr., and even though she is familiar with POTS, she wasn't sure if there was a connection. Maybe the specialist could give more answers?

If I put a cold washcloth on my eyes that seems to help for a little bit too .. but never long enough. I am in my glasses right now .. and my eyes look very tired and red. And we also know that it isn't any makeup products (something the men dr's like to suggest .. ) because I have also gone weeks without that ( I feel bad for everyone who witnessed that .. ) and my symptoms have stayed the same. It is also not only in the mornings, my eyes will usually continue to feel like this all day. I think it's just that when I wake up, its a 'shocker' b/c I've been asleep, with eyes closed (when they feel better), so they seem to feel worse upon waking only because my eyes are open?

If anyone has similar problems, please let me know! This is one of the symptoms that I haven't seem to come across with other POTS people (yet) .. but who knows !!

Thanks~

*ChRiSsY*

Thanks everyone for all the welcome's!

cnm1 -

I was home my whole sophomore year of HS, and then took classes through the community college in my jr. and sr. years. It was a big change, but a great one! I remember being so apprehensive about going to classes once I had been home for sooo long - but it ended up being the most fun years I've ever had! (so far! ) And definitely one of the best things I've ever done. So I'm really excited about starting at John Carroll! At first it didn't even cross my mind to stay in the dorms, until I saw my brother moving into Kent and I thought "Hey, there's no way I'm missing out on this!"

I love my mom (and dad, and brothers!) to DEATH .. so the 'getting away' is more so I can become a little more independent and learn how to help myself even more. I think it's going to help a lot with that isolation that you sometimes feel when you have your really "bad" days - just knowing you are surrounded with people your age.

I will definitely keep up on my writing here and let you know what does/doesn't work for me while being away - anything I can do to help! John Carroll has been very accomodating so far - my mom and I have met with everyone imaginable to make sure everything gets done, and it's been great. I was able to schedule my classes with my advisor for my major through priority early registration - no morning classes for me There are benches in the showers, I have a single room, first floor & they are providing me with my own A/C (I'm bringing my own floor fan too .. so it will definitely be cool enough ), they also changed the thermostat in the lounge so it's colder for me!!, classes have A/C and aren't a far walk at all (the advisor for Students w/Disabilities even walked from my dorm to my classes for me - before my visit - to check out my classrooms and the walk itself!) Some classes are on the 1st floor or they otherwise have elevator access. After meeting with the advisor for Disabilities this week, my mom and I went over my condition with her while she took notes. She was GREAT, and is going to type up a letter for me to give out to my teachers (in addition to my own letter I've been using the past few years) and I am meeting with her also the first week of classes to "tweak" the letter myself.

She also told me to set up a meeting with whoever is in charge of student jobs on campus - that way she could talk to her, and then I could go in and explain which jobs I can/can't do.

It was a little scary at first thinking I would be living on my own, dealing with POTS, but I am only about 45 min. or so from home. My parents or my brother could always be there if I really needed anything, and we have relatives within 10 min. of campus. So I'm really more exciting/nervous (in a good way!) right now.

If you have any questions about anything, or if your daughter would like to talk to me about going away -- anything -- just let me know!! I will be moving in in 8 short days.

sallyann-

Nope, I am the only one with POTS! Although, sometimes I feel like my mom understands POTS and my symptoms so much that she might as well have it too My mom is the one who takes care of me, so she is always on the forum just trying to find out new info!

Thanks again everyone, and I look forward to hearing all of your stories!

*ChRiSsY*

Well, I guess this is my formal intro ... so, Hi everyone! My name is Chrissy, I'm 19 years old and in college. I was diagnosed with POTS in 2001. My mom (PattiL) is always on the forum, but I thought it was about time I made a name for myself! ( As she put it - instead of "lurking behind" hers )

Glad I finally officially joined!

*ChRiSsY*

Dayna,

I got so excited when I read that you have soreness in the same spot as I do! (Who'd have thought hearing about someone else's symptoms would make anybody happy?? )

I have never heard of anyone else with POTS saying that it actually felt sore to the touch in the spot where they are nauseous (probably because no one else has an actual "spot" where they feel sick). Is your neausea in the same spot as I described? Do you feel it radiating out to your back? How about only being able to eat bland food?

Isn't it nice to actually talk to someone who has your symptoms and finally feeling like you're NOT crazy?

Let me know what the Dr. says!

*ChRiSsY*

Hi!

I have had POTS since 2001 and nausea has always been my number one complaint. I have asked Dr. Grubb about it, and I know a lot of others experience nausea too. The thing with mine is that it's localized, and everyone seems to think that if it were POTS-related, it would be just a general "pukey" feeling.

My nausea is right in the middle of my ribcage, where your breastbone meets in kinda of an upside down V - I call it "The Hole" But if I touch that exact spot and push down a little bit, it always feels sore and it hurts, or it feels like some kind of push button that's going to make me throw up!

I'm not sure if anyone else has experienced this either, but I can actually feel the nausea like a straight line through to my back. If my mom rubs my back in that exact spot, the nausea altogether feels better, like it is being soothed. I also end up burping a lot through the night (gross, I know!) which seems to help alleviate some of the nausea.

I do have a pair of wristbands that we bought from AAA that are for carsickness. (I'm wearing them as I type this!) And they ALWAYS end up helping. Sometimes it takes a couple minutes, but I wouldn't go anywhere without these things. They are only about $8 so I got a few different pairs of them.

Also, I think Sprite/Ginger Ale and pretzels help, or any kind of bland foods. I have tried different meds for it but ended up getting more sick being on them.

It's definitely not only you dealing with this, nausea bothers me daily. So don't feel alone!! :-) Good luck, and I hope this helps!

*ChRisSy*