Monstrosity

The cleaner aisle sends me into overload at the store.

I read it a few months back. All in all it was worth the read.

I spent a lot of money on a split king (basically two twin longs together) so I could elevate my bed 6 inches and my wife wouldn't have to. It seemed to help some, although it's really hard to tell what's really helping when you are trying so many different things (like changing meds or eating different). It took me a little bit to get used to it, but I sleep fine now. I may even try to raise it higher if I can.

My thought is I need to try everything I can to get better and I'm motivated to do it for me and my family. I'm really motivated by the natural, non-medicine interventions when possible. If there were some theories that eating dirt would help, I would do that! Next on my list, starting today actually, is starting tilt training at home. Why not?? I tried it last week and was challenged with pre-fainting symptoms within 10 minutes. It's not easy I'm sure, but I don't want to live this way anymore.

I'm going to fight!

http://www.medscape....rticle/703289_4

What is Tilt Training?

Good question, I'm interested in this as well.

Wow, I think I had this last year (too many tests they all blend together). I think they did this and a bunch of other tests that day.

http://my.clevelandclinic.org/heart/services/tests/nuclear/bloodvolumetesting.aspx

After hearing back from another moderator, here's their suggestions:

- at times it takes a few days for a photo to load,

- it might depend on the browser you use whether you can see the photo or not. there can be a difference in using google chrome and internet explorer.

The other moderator was also able to see your avatar as a color picture.

I notice that my feet have issues when going from carpet to tile, or any other surface.

When I view your posts, I see your picture as the avatar. Maybe something finally worked?

Awww... poor dog.

Squirt playing on the computer

That is so cool! I have always wanted a big bearded dragon. I think they are soo cute!! I love his name too.

I'm not a big reptile fan but have always had animals growing up. When a buddy and I moved into a house back in 07 it felt weird not to have a pet. He has allergies to almost anything. I looked at Geckos and after finding out they were Night creatures I figured that wouldnt be good for my sleeping issues... So I found these guys and they are up when you are up. They are great with kids, love to be held and cuddle (cold blooded so they need your warmth), and have never bitten anyone!

Here's Bowser again (this was around a week or 2 ago when the weather was nice! His head is about to shed in this pic.

Above is Bowser sitting on a bike I used to own. This was probably around 07 or 08. I can post a pic but cant figure out how to post an avatar... Anyways I'll post a few more of my Dragons.

The pic is on my profile but does not show up for my Avatar. Anyone know what I'm doing wrong? I used the Gravatar option.

1. I use a steam mop to clean my hard floors so there are no smelly chemicals involved.

2. I turn off the tv and read or get on the computer if the noise starts overstimulating me.

3. I monitor my activity very carefully. I have learned that 2-3 hours of activity is my limit and anything beyond that will have bad consequences. I may be ok to continue with the activity at that time, but, later or the next day I am often very sick. So I stick to my 2-3 hours each day, so that I can at least count on that block of time consistently from day to day.

4. I cut my hair really short so my daily maintenance is less than 5 minutes (less if it needs to be).

5. I sit to do many household things that I used to do standing like putting on make-up or cutting up veggies.

Yeah a Steam Mop is great as well! My mom bought me one for xmas this past year and its helped a ton!

I get this as well. Very frustrating but I figure its just part of what we have...

I'm curious to see what others do that doctors dont tell patients. This can be anything that helps with your daily crusade!

Here are a few of mine:

1. A natural cleaner. I've always been a clean person and hate my house to be dirty. When my symptoms started I had the worst time tolerating household cleaners. I was using a painting resperator mask but gave that up after my fiance found a natural cleaner. I cant stress enough if you have issues with smells or sensory overload I'd try these. Target sells them for a dollar less than the site and if you use a Target card you get 5% off:

http://methodhome.com/shop/antibacterial-kitchen-cleaner/

2. My upper chest and throat get tight. The slightest touch and I choke or gage, not sure why and the Neuro thinks its just anxiety. I found wearing a V Neck shirt helps a ton! I've never liked the look of V Necks on guys until I found these (ladies they have them for you as well):

http://www.target.com/c/men/-/N-5xu2r/Ntk-All/Ntt-mossimo%20v%20neck/Ntx-matchallany

3. White noise maker, helps a ton with my ears for sleeping!

4. A swissball and some small weights. I put this in my living room. When I'm feeling like crap and need to push myself I will do some exercises while watching tv.

5. Compression Stalkings, yes most of you have tried them due to Dr's orders but I found I dont like the normal ones the medical supply stores stock (thin dress looking sock style). My circulation gets cut off real easy especially when I'm on a 13 hr work day. These helped more than the standard dress style:

http://www.amazon.com/Jobst-ActiveWear-Athletic-30-40mmHg-CoolWhite/dp/B001O1QMN8/ref=sr_1_fkmr1_3?s=hpc&ie=UTF8&qid=1333289192&sr=1-3-fkmr1

These are a lot more comfy and also I'd encourage you to shop around for your stalkings. My local medical supply store isint what I consider local and their prices are almost double what you can find them online for...

6. Bearded Dragon pet! I've been searching for a Pet thread (might start one if I cant find one). But my Bearded Dragons are great for helping me occupy my mind when I'm extremely symptomatic. I'm not a snake fan nor do I care for most reptiles but the Dragon is great with kids and loves to be with people! They are easy to care for (just expensive) so unlike a dog that needs walked or a cat that can stir up allergies they arent hard on anything except your pocket book.

What do you do/use?

Last year when I was first diagnosed they said to raise the head of the bed. I did it a hillbilly way but it was no more than 3 inches. When I got my second opinion I was told to raise it 5 or 6 inches. I did the 5 inches for two weeks. The headaches were so intense in the morning I didnt want to get up. Not to mention I felt like I was constantly falling off the bed. So last week I put the bed back to flat. It seems to have helped but I think a little rise would be beneficial. Just seeing what everyones thoughts were?

Boy this is a tuffy... Since your part time I'm guessing your not protected under FMLA. I recently told my boss the extent of everything and Human resources called us in for a meeting. Needless to say I was worried at first (even though I knew I was protected under FMLA). HR just gave me my rights and said I'm protected under Americans with disabilities. Remember your boss is your boss... He's out to make the company as much $$$ as possible.

Hope this helps someone:

http://www.hyperacus...sis/default.asp

When I eat at my parents it can be very challenging. Since I finally gave in and told them about my issues I feel like they are constantly watching me while we eat. Not to mention my mom likes to cook huge meals and Ive told her time and time again not to do that (she just dosent get it). My fiance's parents are even worse. They are always fighting and most of the time the table is so quiet all you can hear is silverware clanging. I usually have to force myself to eat with them and it makes my symptoms worse.

I've had slight tremors all over my body since my Pots/Dysautonomia started. So far Buspar, Effexor and Cymbalta have made the tremors a lot worse... I'm worried at what my doc is going to throw my way next will cause them to flare back up... If you get tremors what hasnt effected them, or has been a minimal effect for your condition med wise?

I'll admit this is one of my scariest symptoms. I've been freaked out that I'm getting Parkinsons but my docs dont think so. When I first saw Michael J. Fox step forward with Parkinsons I think it left an ever fear of that disease. I remember thinking wow, thats a child hood hero of mine and now look at him... I admit he's an even bigger hero now battling Parkinsons and all he's done with it.

Glad I'm not the only one. I went to dinner with my better half the other night and it was a busy Friday night. I thought I was going to either pass out (never have an hope I never do) or leave. I started to calm down a bit but it was still a struggle.

How many of your get sensory overload from your POTS/Dysautonomia? I get this a lot when I'm out to dinner, in a busy place, etc.