An okayish week...long overdue

Hey guys I actually haven't had that bad a week from memory. After being taken of my 30mg of flouxentine and being put back on 20mg my headaches have disappeared leaving me to think that the culprit was the medicine. How come drugs most of the time cause more harm then good?

I am doing this post on a study break, I have heaps of schoolwork to do, mostly a Biology assignment on Australian mega fauna. You guys would probably find my report highly amusing! I want to get it done today, so hopefully, fingers crossed, I can hang out with friends tomorrow!

It was first week back and I can't believe I only have 10 weeks left before I start Year 12. Ah! Scary!

I had one day off because I couldn't really get up and go. I also fainted on Thursday which really, truly and honestly sucked! My whole year was along that hallway because we are all scheduled to have maths at the same time and I swear everyone saw me go down, embarrassing right? Luckily my friends helped me and this really nice guy helped me get to sickbay.

Anyway I need to finish this report so I shall answer the questions so I can be gone.

Do you have bradycardia? Yeah I have caught my pulse in the 40s which is Absoulutely scary! I have no advice other then stand up.

Do you eat meat and how do you tolerate it? I tolerate unprocessed meat fine however things like sausages, parties etc seem to mess me up a tad.

Do your knees hurt when you have blood pooling? Not that I have noticed.

My question is what tv shows do you watch?
At the moment I watch the news and occasionally Home and Away, don't judge.

Rhianne

What is causing your POTS?!

it's not nothing, it's SOMETHING! 

If a doctor has told you that you "just have POTS" or if you haven't yet found out what truly is causing your POTS, I strongly urge you to do so. Postural Orthostatic Tachycardia Syndrome is a collection of symptoms. Symptoms... meaning just a group of problems that have no identifiable cause. There are many different things that can be causing your specific POTS, as everyone is so different.

A fellow POTSY and strong activist in the POTS community, Claire, wrote a wonderful post that I encourage you all to read and check out here. She spent much time on this blog post, and it is made so that you can print it off and take with you to an appointment in the future! :)

Personally, this is really important to me, as I just found out I have structural abnormalities in my heart and blood vessels - this has now been two years after my POTS diagnosis that this "new" problem is finally being identified and addressed.


No matter what is behind your POTS, find out! Push for answers. Only you know your body and something is causing these nasty POTS symptoms.

----

Cheyanne: So, does your doctor think you have Mast Cell Activation Disorder? I am so curious about that and think that is a great possibility for me as well... what is your symptoms like? I hope your hip pain can settle down and surgery can be avoided! :/ yikes. I know how crappy EDS pain is!

Michelle: Have fun at Prom! :) I am not going, lol, as I graduated HS in 2006. The memories are great and it's fun while it lasts, but mine wasn't "that great". As long as you can go for bit, if you have to leave early, at least you were able to go and take pictures and have that experience! I hope you had fun!

Logan: Girl, you are quite the photographer! Those are gorgeous :) To avoid getting sick in the car, I typically like to drive. I hate being the passenger. Weird? I feel as though the motion sickness is worse when I cant be in control and drive. I avoid driving (or being a passenger) if my symptoms are bad... I tried taking motion sickness pills, but nothing seems to help :/

Hannah: I hope you start to feeling a little less icky symptoms.  I find that if I don't have at least a little caffeine, I get nasty headaches! I try to have a cup of green tea everyday if my heart rate is not too high! I also try to massage the pressure point in my hand (between the thumb and pointer finger) , which sometimes can relieve it a little. I hope you find some relief!


Happy Sunday girls, hang in there...
It's almost May!

xoxo
Erin

Launch operation lab rat...again

So guys, as this title suggests I am about to launch into more tests. I know I am getting a make shift tilt table test tomorrow at my doctors.

The reason:

FAINTING

At school....

In public...

Scaring people...

And usually injuring myself

My parents, my friends and my teachers are all worried I am going to "die" somewhere. Ie, collapse down some stairs and spilt my head open. I have fainted at school twice this week, Wednesday and yesterday (which was Monday in Australia). The joys of being a teenpotsy.

I think I have a bruise on my bottom from where I fainted yesterday. Argh! Rah! Blah!

Wednesday when I fainted everyone was really nice. Two guys offered to carry me and my friends sat on the ground with me so I didn't look so awkward. The deputy came and asked how I was and my drama teacher came and saw how I was.

Yesterday, I was walking to class alone. I fainted and I got yelled at when I went to stand back up. I got told I needed to see the first aid person and stuff. I was like, ergh! This is normal. The teacher yelled at me and said fainting wasn't normal and blah blah blah. I just told her I am going to Maths, have a good day, and went to class.

So tomorrow I have a doctors appointment, cheers to being a lab rat.

So my question for this week is: do you sometimes feel better after a faint?

Yesterday when I fainted I felt sick but then afterwards I felt so much better.

Anyway, that is my potsy week for you. I hope yours was better then mine. The definate highlight (well besides giving three minutes of my english speech before getting dizzy) was skyping with Logan and my brother comming in and asking about the pots in her brain.

Now onto the questions.

Now sorry I need to finish this post up and do my homework so I am just answering the questions.

Do y'all know any boys like us? Yeah I met a boy with bad CFS and headaches when I was in the hospital. I also know a boy with POTS.

What is your favoUrite coloUr? Yes in Australia both words have a u in them and I felt the urge to correct that. I like blue and green to be honest.

Do any of you have narrow pulse pressures (the difference between your top number and bottom number... it should always be around 35-40) and does your diastolic (bottom number) ever get really high? I have no idea. I sometimes have high BP though.

Bye for now
-Rhianne

Getting myself some education.

I will start with the posts before launching onto my week. (BTW, what do you guys think of the new pretty layout? Tell me if you want anything to change).

Cheyanne: I related when everyone else was sick and you just thought your Gastroparesis was acting up. I think I've done the same in the past.

You asked what is the highest you know your heartrate has been? I don't know where Mum put my medical folder so I can't let at stress tests, halter monitors and stuff. I have seen it on my hospital charts in the 240s though, when I have been really unwell and they have done posturals. 240s is just ridicolous.

Hannah: what is your favourite i'm sick but need to get out of the house activity? Playing the backyard with the dogs. :) does the backyard count as being out of the house?

My question: Do you have a scale you rate days on?
I try to keep track of how many A (normal person) B (slightly strange but really good) C (typical day) D (Bad POTS day) E (ARGH! I HATE MY LIFE! I CAN"T WALK! MY LIFE IS OVER). I haven't had a E day in ages, I am bouncing between Bs and Cs at the moment which is okay.

My week is that on Wednesday I went downtown with my friends (I only have two periods on Wednesday). They had all you can eat pancakes and I just had a milkshake. We went via the toyshop and the library. Extension English was good that day!

Thursday, can't remember really what I did. On Friday my Dad was my casual teacher for double biology and I counted 3794 grains of rice with my friend. I hate you Dad! Kidding but I am not letting you live that down.

Saturday, my friend was having a sleep over because one of my friends is leaving school to do a course in hospality. So there was a going away party. I managed to go for a few hours but it was hard.

Sunday, I helped clean out the garage a bit and did some homework. The usual.

Yesterday, I went to school, then I went via my friend's house and saw all her puppies they are gorgeous. I love dogs. :) Then I went to the gym, where I worked out and got fit.

Today, I went to the library after school then hung out with my friends (one who was on her lunch break).

Tomorrow is Wednesday again so I only have two periods, I will probably go to my friend's house and swim his pool with some of my other friends. And we will probs get milkshakes. I love milkshakes haha.

Wait I almost forgot, last Friday I managed to do an obstacle course in Drama BLINDFOLDED. I was being helped by my teacher and my friend but I still managed to do it. I only sorta tripped once.

LOGAN! YOU BETTER POST TOMORROW! (btw my brother saw the video of you putting the tube down your throat and thought it was a magic trick. lol.)

Almost 200 posts!

Yes guys! Actually this will be the 168th post on the blog but we are getting close right? That is so cool.

So I am going to start with the posts then I will talk about my week, (well type not talk, haha).

Logan: Where are you girl? If you don't post tomorrow I will spam your inbox. Kidding, but I will send you a message and I hope you are okay. I know you were throwing up yesterday.

Cheyenne: You're driving? Wait, aren't you only 15? In Australia, you can't drive until you are 16, when you can apply for your Ls (learners permit) then at seventeen you can get your red ps (red permit), green ps, then your blacks (full license). Did you have any issue getting your permit? My doctors I don't think will ever let me drive.

You asked about gluten, and no I am not gluten free but I try and avoid white rice and bread.

Miranda: I am glad your homeschool review went well. You asked about what we do for joint pain and stiffness. I don't get that so I am not much help. Have you tried yoga though?

Hannah: Australia zoo is one of the zillion reasons you should get your but out to Australia! Haha, come to my house and we can have vegemite and tim tams. Hehe! Aussie Aussie Aussie Oi Oi Oi. I am sorry you overdid it cleaning by the way.

Michelle K: My Aussie Pal! First of all, even though I think you are crazy for going back to work, I hope it goes well for you! And I'm glad you have found someone, he sounds like a nice guy. You asked about abdominal pain and yes I do get that, especially after I eat Chinese food.

Erin: I just want to say that American healthcare sounds CRAZY! 25 dollars a day. I am so glad I'm Aussie. You asked about colds and I suck on eucalyptus lollies and take honey, I also brush my teeth all the time.

My week has been good, I overdid it a bit during the weekend but oh well. My Grandma was here, so I hung out with her a bit. We also went school shopping and I got all my supplies, I even have a new uniform (seniors get a new uniform at my school).

On the weekend, I helped my friend with my drama project (for her HSC) and it was a lot of walking, standing, running. Two of my friends stayed over on Saturday and we watched Music and Lyrics (which is a great film). Sunday night I was so tired I went to sleep at like 7!

This is the last week of school holidays. So my question this week is how do you stop yourself from overdoing it?

At the moment I do a to do list everyday with all the stuff I want to accomplish and stop when I do all those things, even things like "wash your hair" is on the list. I can only put so many tasks on the page. Haha.

I hope everyone has a good week. And I will let you know next week how I am going back at school.

Tremors Stink!

Hey guys! I am posting this week! Haha.  Thursday was bad, I woke up late and got really bad tremors. At least I think they’re tremors. My eyes roll back and I have trouble speaking. I’ll shake horribly then randomly it’s just like my eyes close and my whole body relaxes, then boom I get ‘em again. Sounds agitate them too. If I hear a loud-ish sound it makes me jerk. I’ll ask my question early: When (if) you have tremors, do your eyes roll, do you go “in and out” like your not there then you are, do you have trouble speaking, do you get dizzy and have weakness so bad you can’t walk after? I’m trying to figure out if these are tremors. And what’d’ya know? I have another UTI and I’m on the same med, double the dosage!

Miranda, Logan and I had a great time together! I so wish I could post pictures but I can’t find my camera cord! I know, so disappointing! I’m glad Logan was able to post a picture.
Have you girls caught up on sleep? I’m still so exhausted! Of course we would have loved it if we could have shipped the rest of you Dysautonomiacs out here (yes, that includes you fabulous subs!)…But maybe that’s another time :)
Yesterday I rode a power cart for the first time in Walmart… I was embarrassed at first but I wore out slower and it was actually kind of fun! Though when I got home I had tremors (not as bad as I wrote about above, but it's been storming here and really hot so my body is a little bit of a mess!) and I had mad insomnia last night. So my body is just bleh.

On to your questions:
Rhianne: I sure hope things are doing way better for you! Your question was,  Are you a fainter? If so give me some advice! Fortunately I am not a fainter, but I get lots of presyncope. For that I just drink a ton, lay down and have my salt! I wish I could offer more help girl!

Logei: I hope your fever has finally come down! That’s torture! Your question was,  Do you struggle with your eating habits because of your Dysautonomia in some way? Yes. I think almost all of us probably do. I have days where I have a crazy appetite and days where I can barely eat…Days where I have trouble swallowing or horrible acid reflux or stomach pain, etc…And recently finding some foods I can’t eat.

Erin: You go girl on the full work up! You’s tough! I’m sorry about your EDS diagnosis but I am thankful you have that answer and another issue you are aware of so you can better care for yourself! I’m terribly sorry to hear about your mother, too! You guys are troopers all the way! Your question was,  What kind of POTS do you have? Hyperadrenergic, Partial Dysautonomic, or combined? You know, I’m not entirely sure. I never got a diagnosis on what type, but I believe it’s probably Hyper or combination because my mom and sister both show signs of POTS and I have struggled with both low and high BP. I’m not entirely sure about the differences, other than Hyper is usually life-long and Partial you can grow out of… Hyper has adrenaline problems and high blood pressure and Partial has low…Though you guys might have to correct me on that! It’s a lot to learn about and take in, for sure!

Miranda: I sure hope you feel better! I feel for you right now being so sick from getting your wisdom teeth out. Hang in there! You’ll feel better soon :) Your question was, Do you know any good recipes for a liquid diet? I am working on some here and there for my blog, I think I have a couple up, but I basically throw a bunch of fruit in the blender with maybe some flaxseed or hemp protein powder. I’ve been adding almond butter too for protein, but you could do peanut butter or sunflower seed butter…Cashew butter even! To make it taste more appetizing if you add any powders, you could throw in some sweetener (sugar, stevia, agave, etc.). For some healthy fat and added nutrients you could throw an avocado in there. The only thing it really changes is the texture! I’d definitely incorporate some kiwi in what you make, they are a super fruit and add great flavor and texture! By the way, my dad got a bunch of almond butter really inexpensive so, I can bring you a jar if you’d like. And if you’d like to try my protein powder out, you can have some of that too!

Tana:  Miss you!!!!!!!

Have a good weekend ladies and readers!
Smile (you can always find a reason to smile:):

*I do not own this picture*

~Hannah

Brain Fog, much?

Oh boy, it's 7:50pm... 
I almost forgot to post for the lovely Rhianne. 
Brain fog much?!

Anyways. These past two weeks have been a roller-coaster ride.
This last week I had a full autonomic workup done, EMG, NCV testing and more.
The only new thing I found out is that I have small fiber neuropathy.
Boo, but it explains my tingling feet/cold feet, hands, etc...
For more on this, check out my blog post here

Also, I have just been officially diagnosed with Ehlers-Danlos Syndrome III (Hyper-mobility Type).
I scored a 9/9 on the Beighton Criteria (my mom was diagnosed as well)
**her collagen is so faulty that her organs are not stable in her body & mesh nets are used to keep everything up :/ **
We are going to be tested for Vascular Type in a couple weeks to rule it out (chances are VERY low) but it is important to rule out.
It explains SO much and my neurologist and geneticist are working together to piece out my treatment.

I have always wondered why I have POTS and not knowing was fairly bothersome for me.
Even though my symptoms came on rather suddenly and were triggered by my wisdom teeth removal, overall, the root cause and biggest trigger of dysautonomia (for me) is the collagen defect known as EDS.


My question to you all is what kind of POTS do you have?
Hyperadrenergic
Partial Dysautonomic 
- or -
Combined

Also, do any of you have Ehlers-Danlos Syndrome?

Now for your questions!
I think the only one left is LB's question...
"Do you struggle with eating habits because of your dysautonomia?"

Yes. I have always struggled with my eating habits...(not always necessarily because of Dys though). I have have GI troubles since I was seven years old and been on steroids for years to control my colitis :/ Every time I would eat, I would get so much pain, I was constantly in the bathroom (not fun) and my weight would drop drastically. I was drinking boost for awhile and just trying to get all the nutrients I could. It is better not, but not great.

Take care everyone :)
♥ Erin

Hold on, baby you're loosing it

This week has been crap.

There is no nicer way to phrase it then crap. 

So I am going to start with my week.

On Monday, I did schoolwork and then when over to a friend's place to get help in Maths. I was pushing myself but I wasn't going to admit that.

Tuesday I did schoolwork in the morning and then in the afternoon I crashed really hard. I went to watch Angus, thongs and perfect snogging but even that seemed too hard for me so I went to sleep and didn't eat anything for dinner.

Wednesday, ah the wonderful joys of Wednesday. Worst. Pots. Day. Ever. As you guys know I spent Wednesday night in the ER. I got to the point at home, where I couldn't speak, or even crawl. So Mum drove me in and they put me straight in via the ambulance entry in a wheelchair.

The doctor I saw was really good. He didn't know of Pots but he did some quick research and decided to give me an IV and also check my salt/potassium levels.

I got three litres overnight and managed to walk out of the hospital Thursday morning where I slept all day. 

The next bit I will be lazy and copy and paste from my blog...

We left at 3am Friday to drive to Sydney and we had some time to kill before we got there so we went for a drive around Sydney Habour and around the bridge and opera house. I don't have pictures sorry! The iPod was flat.

Then we went shopping and I'll post a seperate post about that experience.

It was pretty unproductive actually, I don't understand why they got me down there in my opinion.

Both my parents were in the room, as well as my professer, his registar and my social worker.

We talked about pacing and how I shouldn't overdo it. Haha, comes from the people who made me overdo it against my own will during my last admission.

I got posturals done, weight and height. My weight has gone up a bit after my recent weight loss and my height is 174cm I think. 

I blacked out a few times going to the next room where they did all that stuff. When I got back my breathing was all over the place and my heart was pounding. I was    dizzy as and everything was shaking.

The appointment ended and my
social worker and professer left. His registar was filling out some forms for us.

When we went to leave, I stood up and collasped into my chair, blacking out. Dad tried to help me up but I just crashed into him hard and fainted. Tried again, ditto. 

The registar came back to return the forms and the OT came and got me a chair.

They sent me home like that.

They sent me home unable to walk, stand or speak one sentence.

Anyway car ride home, bad earthquake vertigo had to crawl into my Aunty's house where we stayed. I threw up four times. Then went to sleep.

Then I came home Saturday. Yesterday, I can't remember what I did. And today is still shit as. I have fainted like everyday this week and my tremors and vertigo have been so bad. School goes back on Tuesday so I hope I can return. I go back to hospital for a two week admission on August 1st.

This post is turning out to be...long. Sorry guys.

Trixie is doing well and is getting along with my labrador. Just thought I'd mention that.

So now, finally! let's get on to the questions shall we? 

Logei asked: does nutrition have a big impact on your symptoms? 
Yes. It does. I find whenever I eat crap (chocolate, junk food, excetra) I feel so bad and tachy and everything. 
Erin asked: Any weight loss or gain since pots?
Since starting on my SSRI I have lost five kilos in a few short weeks.
Hannah: Any natural remedies for headaches? 
Water? Sorry I don't get headaches. True fact about me: I will only get a headache when I am about to throw up. :) it's useful when nausea is a symptom but if i have a headache its like pass me that bucket! 

My question is: are you a fainter/if so give me some advice! 

Yeah I haven't been a fainter since Wednesday. 

And haha I have a funny fainting story. Okay I was talking to my Dad in the hallway and I go to faint so I go to grab hold of him around the neck except I miss-punching him in the face! I regain consciencness to ah! you bitch! haha it was really funny. It was revenge for when he was zapping me in my wheelchair on Friday causing me to spill a bottle of water on myself.

Well I am going to go because this post is way too long and I am sorry for that.

Rhianne 

What do you think...

Hey ladies and gents : ) 

(I'm subbing again for Tana)

So, I have an idea. 

Actually, it's was originally my wonderful friend Brooke's idea!

Over at the TDC (The Dysautonomia Connection) around this time last year, a couple of us decided to exchange mailing addresses and send letters/cards/etc. Today, I got a letter from Brooke :) 

I don't know about you all, but getting letters in the mail sure makes my day! 

(I actually get loads of bills, student loans papers, etc...) so GOOD mail is always a positive. 

{Or in your case} any mail at all is probably a positive!!

Thoughts? Do you think this could possibly be an idea. Now, I am only a sub and not really part of your wonderful blog and all, so maybe one you can adopt the idea or something!!

--------------------------

Lastly, I am really excited for this Friday, as I am going to a geneticist for further evaluation on which EDS type I may have. We learned that my mother almost definitely has EDS (we think classical) so this appointment may explain the cause of my POTS. For that reason and that reason alone, I am anxiously awaiting my appointment! It will be nice to know what "caused" my POTS if this EDS diagnoses is accurate ♥

::Question Time::

Francesca's question

If french fries are called chips, what are chips called?

Actually, I have never called french fries chips... I think french fries should be called FF & chips, chips. So, to answer your question...I guess it depends on the person?

Hannah's question

What are your POTSy essentials while traveling? 

Sunglasses, Inhaler, Phone, and Wallet (these are with me at ALL times)

As for POTS needs, Gatorade/Smart Water. 

Everywhere I go, I take one of these two liquids with me.

Also- I never really go anywhere farther than 10-15 minutes away, as I get car sick/motion sick very easily and with this summer heat, I cannot bear to be out and about for too long.

Miranda's question

Do you have vision problems?

I have never had ANY true vision problems. 

I actually have more than perfect vision 

{according to my freshman high school eye-check up 9 years ago done at the school}

...maybe I should get a check up sometime as I have never been to an eye doctor...haha

BUT...I do have blurred vision, eye strain, focusing problem that I just attribute to POTS

Rhianne's question

What is your favorite type of exercise?

I actually LOVE yoga. I took these classes in college and it motivated me because I actually had to show up (as I was getting graded!) and I really learned to love the inner workings and deeper meanings of the yoga traditions...

LB's question
Does nutriton have a huge impact on your symptoms?

I was once told I was lactose intolerant for two years. Then they said I grew out of it, but I really think that I should still be avoiding dairy products...

Also, I had my gallbladder removed and I have severe GERD, so highly acid foods really bother me. 

The worst is grapefruit. It gives me pleurisy attacks, makes my heart race and the acid is just awful.

Overall, I just try to eat a well balanced, low sugar diet. 

Lastly, I really want to try to go Gluten-Free as I have Lymphacytic Colitis (I was on steroids for three years for it) and have had really bad GI issues my whole life. 

My question!

Has anyone had difficulty with weight gain/loss since their diagnoses with POTS or starting certain medications?

Hope everyone had a good fourth!

Take care and stay cool!

♥Erin

I'm still standing

The questions:

Francesca's question: If french fries are called chips, what are chips called?
In Australia we call both french fries and chips, chips. Yep, if that  is any help.
Hannah's question: What are your POTSy essentials when traveling?
When ever I go out whether to school or on holidays, I take my salt shaker and salty snacks. My beloved vegemite! My walking stick, Sir Sticky. My drugs. Not much really.

Miranda's questions: Do you have vision problems?
No, but I do get blurred vision as a major symptom. I am colour blind too.

My question: what is your favourite type of exercise?
For those of you that don't know, I have been a bit of an exercise freak this week. Running, trampoline, weights, pilates, bike. On average doing about 2 hours of exercise a day. My favourite is definately the trampoline.

My week:
It has been good. I had a pots attack yesterday and I have picked up a bit of a cold but doing really well pots wise. I have been going to school four days a week and going to classes and stuff. It's been really good. I feel really fortunate.

Tuesday was my birthday and thanks you guys for the birthday messages. It was a good day and as many of you know, I got a gorgeous puppy called Trixie. I also got some DVDs, the yellow wiggle autobiography and some little odds and ends. My friends got me a gorgeous bear that they all wrote messages on. It is adorable.

So I don't have much to say. It hasn't been that exciting. I picked my subjects for next year and for the HSC they are:
Society and Culture
Drama
Modern History
Biology
Advanced English
Extension English
Maths

I think it will be good. Hopefully my health stays good.

Rhianne

Make you happy

I think I will start with the questions:

Logei: are you scared of clowns? 
I wouldn't say I was scared of them but they are way freaky. I have a fear of elevators and mice.

Erin: Good to see you on the blog! You did a great job. You asked: do you use a shower chair? 
Yes I do. Well it's more like a step stool actually. 

What do you guys want to do when you grow up/graduate? And how do you think dysautonomia will affect your choice? 
Well I want to be a novelist but seeing that is a pipe dream, journalism or script writing. I don't think I will have pots forever and even if I do, they are desk jobs.

And Miranda, I hope things work out better soon I am thinking of you.

Francessa didn't have a question (I probably forgot to tell her to ask one).  You were a great sub though! :) 

My question is: does anything cause/help with tremors? 

I have had them a lot recently. I scared my English class when I went on Wednesday with what resembled an epileptic fit.

So onto my week:

Well early last week we had a lot of stuff for subject. There was a night information session on Wednesday and  I did pretty well pots wise.

I picked:
Drama
Biology
Modern history
Society and Culture
Maths
Advanced English

This is the first year you get to pick all your subjects so it is pretty exciting. My pots has been good too so I have managed to do a lot.

And yeeeeee, it's my birthday tomorrow. I will be fifteen. 

So this has been a good week. The best in months so I am really really happy.

And I have upped my school days to 4 a week and am returning to my maths class (well returned I went today).

Life is great.

-Rhianne