Differently Abled (fly your freak flag high)

SuperFemme · 07-19-2010, 05:10 PM

Quote:

Originally Posted by SimpleAlaskanBoy

I'm SAB, 31...I was born with hydrocephalus (water on the brain), a preemie two months early (and two pounds 12 oz) and was first shunted at two months old. I've had 20+ shunt revisions, and am currently going through what I believe to be a malfunction (a major reason to have the revision)
I also have major depressive disorder, and anxiety issues although the anxiety has lessened over the years. I'm on disability.
Just wanted to introduce myself.

~SAB

Welcome SAB. You ARE a miracle aren't you? So glad you're still here with us after such a rough start.

I had a shunt for around 1 1/2 years after a brain injury. I had a lot of stomach problems during that time.

What is the malfunction you have with yours? Is a revision a rough thing? I am super curious...

Gayla · 07-19-2010, 05:33 PM

Did I ever do the intro thing?

OMG Ambien. It was the first thing my doc gave me for sleep and it's the freakiest stuff. The first few nights I took it as I was laying down but then it took about 20 minutes to kick in so I started taking it about 20 minutes before I actually went to bed. I didn't do weird stuff, but all of the inanimate objects in my house did! I have a shelf of elephants (that I've been collecting all my life) they started dancing in unison. My shoes were moving around. At one point my desk stopped being solid and I could put my hand through it. I was kinda cool but then one night the walls started closing in on me, literally the ceiling was about a foot above my face when I layed down, I haven't taken any sense.

I tried Trazadone and it seemed to work well but the light sensitivity the next day made it really hard.

Now that I don't have to do the 9-5 thing, I've switched back around to what feels more normal to me and I think I sleep better. Usually that means I fall asleep between 2 and 3 a.m. and get up between 10 and 11 a.m. Out of that I think I get a good 5-6 hours of deep sleep.

We dug out the treadmill a few weeks ago and I notice I do sleep better on the days I actually use it. I find 10-15 minutes reduces the flare risk and helps me sleep ok but I have to do it earlier in the day, not in the evenings.

SuperFemme · 07-19-2010, 05:47 PM

oh my gay.
thank you for sharing your ambien dancing elephants here.

i was truly wondering if i was the only one who went batshit on the stuff.

SimpleAlaskanBoy · 07-19-2010, 05:51 PM

Quote:

Originally Posted by SuperFemme

Welcome SAB. You ARE a miracle aren't you? So glad you're still here with us after such a rough start.

I had a shunt for around 1 1/2 years after a brain injury. I had a lot of stomach problems during that time.

What is the malfunction you have with yours? Is a revision a rough thing? I am super curious...

Thanks for your questions, Super...
A neurosurgeon I had in Alaska put the cause of a malfunction this way: The top layer of your brain flakes off like skin. Often, it is this material that clogs the shunt tubing leaving it unable to drain the CSF (brain fluid) it is supposed to. When I was growing up, it was either this reason or that I needed more tubing due to growing. Of course that stopped a long time ago.

He also told me that some patients have more malfunctions than others. I think I fall into that category.
Anyway. A revision is pretty much brain surgery and I *do* have a lot of scar tissue around my head and stomach but it is a relatively easy surgery, they just knock me out and after unclogging it put new tubing in. As I've gotten older it takes more out of me, but I am used to it.
I have to reschedule a CT scan that I am supposed to be having this week of my stomach end of the shunt, after that I will make another appointment with my current neuro. He told daisy and I that he doesn't want to do a revision every time he has a patient with a shunt complain of the symptoms (headache, mood changes, either sleeping too much or too little, vomiting, nausea, loss of appetite..) but that he knows that often CT scans don't show anything wrong (which is every single time, with me)
Until then I take Vicodin to dull the pain. I've had the symptoms since late May early June, so I hope something happens soon. I know my mom back in Alaska is worried, along with daisy and daisy's mom.
Well enough about me. I just wanna say that I am loving reading everyone's stories...sometimes it helps to know that you are not alone.
~SAB

ravfem · 07-20-2010, 10:22 AM

ok i have an ambien story too....

Like someone else said, i started taking it about 1/2 hour before i was ready for bed to give it time to kick in.

Well, one morning my house mate asked if i had heard the smoke alarm go off during the night. Nope, i said, and didn't think anything more about it.

Later as i was sitting at the computer, i noticed a big jar candle sitting on the floor in the corner of the room. i wondered why it was there and went over to get it. It was covered with black soot and had water in it, as well as bits of burnt paper. i sat there trying to figure out what was going on, and slowly memories started coming back....i remembered sitting at my desk, lighting the candle and holding paper over it. That's all i remembered.

i almost set the house on fire on ambien! Yeah, it got trashed quickly. A friend eats in his sleep when he takes it....wakes up with food wrappers and crumbs all over the bed but with no memory of doing it.

my doc switched me to amitriptyline (elavil) for insomnia, which works ok usually with no hangover effect. It's old as dirt and very cheap.

Gayla · 07-20-2010, 05:10 PM

So apparently my two day low hanging fog is mostly just due to allergies. :/

Had a post-surgical follow up with my ENT today and he walked in the door, took one look at me and said, "Happy Allergy Week!" When I told him I'd been foggy for a couple of day, in addition to the razor blades in my eyes and the runny nose, he told me grass pollen is really high and if my allergy is severe enough it can affect everything from concentration to cognitive kind of stuff.

Yay. He did call in scripts though and said I should be thinking more clearly in a day or two. (clearly? clearer? sigh)

I rarely like my docs much less love them as much as I love this guy. He just takes care of stuff without me having to beg and explain over and over again. Then again, he is the one who saved my butt when surgery went all wrong so I guess it's not all that weird to be madly in love with a doc who's probably the sole reason I'm still upright.

So, for all the foggy folks, check your pollen levels!

Corkey · 07-20-2010, 05:16 PM

Poor Gayla, if I had allergies to trees and grasses I would do as you and down some pills. I hope they help you very soon. My allergies are to foods, yea I eat stuff I really shouldn't but I got tired of bland. I can honestly say it's the fibro fog.
Have you tried an ice pack for your eyes in the meantime?

Gayla · 07-20-2010, 05:24 PM

Yeah, I did ice for a bit this morning and it helped but then had to go out in the world and all. He called in some drops and Flonase, I think. That should help.

It was just weird talking to him because I know I've been having issues the past couple of days with allergies but I really never made the connection. I mean, I have thyroid fog and I have fibro fog and I can usually tell the difference between them. It never crossed my mind that now I have hayfever fog to go along with both of those!

Corkey · 07-20-2010, 05:38 PM

Quote:

Originally Posted by gayla

Yeah, I did ice for a bit this morning and it helped but then had to go out in the world and all. He called in some drops and Flonase, I think. That should help.

It was just weird talking to him because I know I've been having issues the past couple of days with allergies but I really never made the connection. I mean, I have thyroid fog and I have fibro fog and I can usually tell the difference between them. It never crossed my mind that now I have hayfever fog to go along with both of those!

Yer a foggy mess. Feel better Gayla.

07-20-2010, 10:22 AM	#5
ravfem Senior Member How Do You Identify?: i'm a girl Relationship Status: negative Join Date: Feb 2010 Location: Georgia Posts: 1,811 My Photo Gallery Thanks: 9,239 Thanked 3,126 Times in 1,270 Posts Rep Power: 1969286	ok i have an ambien story too.... Like someone else said, i started taking it about 1/2 hour before i was ready for bed to give it time to kick in. Well, one morning my house mate asked if i had heard the smoke alarm go off during the night. Nope, i said, and didn't think anything more about it. Later as i was sitting at the computer, i noticed a big jar candle sitting on the floor in the corner of the room. i wondered why it was there and went over to get it. It was covered with black soot and had water in it, as well as bits of burnt paper. i sat there trying to figure out what was going on, and slowly memories started coming back....i remembered sitting at my desk, lighting the candle and holding paper over it. That's all i remembered. i almost set the house on fire on ambien! Yeah, it got trashed quickly. A friend eats in his sleep when he takes it....wakes up with food wrappers and crumbs all over the bed but with no memory of doing it. my doc switched me to amitriptyline (elavil) for insomnia, which works ok usually with no hangover effect. It's old as dirt and very cheap. __________________

07-20-2010, 05:16 PM	#7
Corkey Infamous Member How Do You Identify?: Human Preferred Pronoun?: He Relationship Status: Very Married Join Date: Dec 2009 Location: Where I want to be Posts: 8,155 My Photo Gallery Thanks: 47,491 Thanked 29,270 Times in 6,637 Posts Rep Power: 21474859	Poor Gayla, if I had allergies to trees and grasses I would do as you and down some pills. I hope they help you very soon. My allergies are to foods, yea I eat stuff I really shouldn't but I got tired of bland. I can honestly say it's the fibro fog. Have you tried an ice pack for your eyes in the meantime? __________________ "Many proposals have been made to us to adopt your laws, your religion, your manners and your customs. We would be better pleased with beholding the good effects of these doctrines in your own practices, than with hearing you talk about them". ~Old Tassel, Chief of the Tsalagi (Cherokee)

07-19-2010, 05:33 PM	#2
Gayla Timed Out How Do You Identify?: Kinky Butch Top Preferred Pronoun?: I'm not picky Relationship Status: She makes me dance like a fool and forget how to breathe. Join Date: Mar 2010 Location: SF CA Posts: 3,229 My Photo Gallery Thanks: 877 Thanked 7,077 Times in 1,966 Posts Rep Power: 0	Did I ever do the intro thing? OMG Ambien. It was the first thing my doc gave me for sleep and it's the freakiest stuff. The first few nights I took it as I was laying down but then it took about 20 minutes to kick in so I started taking it about 20 minutes before I actually went to bed. I didn't do weird stuff, but all of the inanimate objects in my house did! I have a shelf of elephants (that I've been collecting all my life) they started dancing in unison. My shoes were moving around. At one point my desk stopped being solid and I could put my hand through it. I was kinda cool but then one night the walls started closing in on me, literally the ceiling was about a foot above my face when I layed down, I haven't taken any sense. I tried Trazadone and it seemed to work well but the light sensitivity the next day made it really hard. Now that I don't have to do the 9-5 thing, I've switched back around to what feels more normal to me and I think I sleep better. Usually that means I fall asleep between 2 and 3 a.m. and get up between 10 and 11 a.m. Out of that I think I get a good 5-6 hours of deep sleep. We dug out the treadmill a few weeks ago and I notice I do sleep better on the days I actually use it. I find 10-15 minutes reduces the flare risk and helps me sleep ok but I have to do it earlier in the day, not in the evenings.

07-19-2010, 05:47 PM	#3
SuperFemme Timed Out How Do You Identify?: Permanently Banned 10/24/2010 Preferred Pronoun?: She. Relationship Status: Married (one of 18,000) Join Date: Nov 2009 Location: Atascadero, CA Posts: 4,933 My Photo Gallery Thanks: 2,309 Thanked 7,108 Times in 2,327 Posts Rep Power: 0	oh my gay. thank you for sharing your ambien dancing elephants here. i was truly wondering if i was the only one who went batshit on the stuff.

07-20-2010, 05:10 PM	#6
Gayla Timed Out How Do You Identify?: Kinky Butch Top Preferred Pronoun?: I'm not picky Relationship Status: She makes me dance like a fool and forget how to breathe. Join Date: Mar 2010 Location: SF CA Posts: 3,229 My Photo Gallery Thanks: 877 Thanked 7,077 Times in 1,966 Posts Rep Power: 0	So apparently my two day low hanging fog is mostly just due to allergies. :/ Had a post-surgical follow up with my ENT today and he walked in the door, took one look at me and said, "Happy Allergy Week!" When I told him I'd been foggy for a couple of day, in addition to the razor blades in my eyes and the runny nose, he told me grass pollen is really high and if my allergy is severe enough it can affect everything from concentration to cognitive kind of stuff. Yay. He did call in scripts though and said I should be thinking more clearly in a day or two. (clearly? clearer? sigh) I rarely like my docs much less love them as much as I love this guy. He just takes care of stuff without me having to beg and explain over and over again. Then again, he is the one who saved my butt when surgery went all wrong so I guess it's not all that weird to be madly in love with a doc who's probably the sole reason I'm still upright. So, for all the foggy folks, check your pollen levels!

07-20-2010, 05:24 PM	#8
Gayla Timed Out How Do You Identify?: Kinky Butch Top Preferred Pronoun?: I'm not picky Relationship Status: She makes me dance like a fool and forget how to breathe. Join Date: Mar 2010 Location: SF CA Posts: 3,229 My Photo Gallery Thanks: 877 Thanked 7,077 Times in 1,966 Posts Rep Power: 0	Yeah, I did ice for a bit this morning and it helped but then had to go out in the world and all. He called in some drops and Flonase, I think. That should help. It was just weird talking to him because I know I've been having issues the past couple of days with allergies but I really never made the connection. I mean, I have thyroid fog and I have fibro fog and I can usually tell the difference between them. It never crossed my mind that now I have hayfever fog to go along with both of those!