My life, and other things
 

Hi everyone. I have been reading and trying to keep up.

But sometimes that is hard. I've been busy, this is a busy time of
year for me.

We got paperwork today, showing that Derrick has come up on the
Service Waiver as a targeted person. So now I have to get the
paperwork I have to the doctor. And my part or his part filled out
and sent back by May 8th.

I sure hope things go well because 10 or 11 years ago the county
we live in lost his waiver at the time. And he had to go back on the
list and wait. So this was something I wasn't sure when or if it
would ever happen.


Next, I am having migraine problems again. Really bad. Not sure
why. But have a appt with my doctor for them next Thursday.
Soonest they could get me in.

Seems lights in many places along with outside are effecting my head.
Also pain behind my ear. Not sure why that one is though yet.


I am working on all this at once. heehee.


Next got the paperwork, for my Grandson's evaluation. We go for his
transition to kindergarten next Tuesday. I am not surprised with what
I see. But they did some speech testing, in the praxia area. I wasn't
expecting. Even though we tried about a year ago telling them. That
a private therapist has said, she thinks this is what he has.

I can't tell if they are saying this is true or not. I guess we will be waiting
to see. I also am really surprised with the wide variation in the testing.

I am not surprised that he test in the moderate range. But usually its
either consistently in that area. Or not. But his is spread out. And
I'm surprised, but also knew he was bright. So now I have to try and
figure it out.

Donna:grouphug::hug:

you sound very busy donna, sorry about your headaches...hope you get some lasting relief soon.
bizi

Hi Donna,
sorry to hear about your headaches... I know what a pain they can be.

Your grandson sounds like my nephew... he has apraxia. They said there is a synapse between this brain and his tongue that misfires. My nephew knows what he wants to say and in his brain it comes out fine, but to us we don't understand what he is trying to say and this frustrates him. Most times we just agree with him. (probably not the safest thing to do sometimes..we know.)

His teachers say that he is incredibly smart!! He's in the 1st grade now, knows all of the presidents by face & name, all of the teachers in his school by name, and most of the kids in every grade. Point to a picture of any animal and he can tell you what it is. My nephew is accompanied by a teacher's aide from the time he gets off the bus to the time he gets back on to go home.

He was also diagnosed with Tourette's this year, but so far they have it under control. Though he is VERY anxious around crowds--just like me.

I hope your grandson gets the help he deserves just as my nephew has...and they both can excell into brilliant young men!!!

I wish you and your's the best!
:hug:
Abbie

ouch me too
 

Dear Donna

Sorry your migraines have been worse. Just to let you know you are not alone. My migraines have increased a lot lately - this past month i had more days with than without! :o I am also getting motor and cognitive sx more often... scary. :(

Btw, I have problems with most lights but that isn't new for me... sigh. Btw, i commonly get tension down the neck and back after the migraine starts and persists past the headache. Just saying just in case - I've read that it's not uncommon for tension sx to emerge on same side as migraine. When i get the tension bit, the pain starts around the back of the ear - dunno if it could be similar for you. Mine is definitely migraine related.

New sx are a nuisance... they may want to MRI you. I wish you well at your doc's appointment. I hope everything is ok and they get you sorted out quickly so you can feel better. It is so hard to get things done with migraines hitting left and right ...ehhh... no pun intended. :cool:

Good luck with getting Derrick's service waiver through and sorting out Will's speech test results for his entry to Kindergarten...wow.

:hug::hug::hug:

~ waves ~

Waves


Most of what you stated hit it on the nose.

I will have to look into those things.

I have always had sensitivity to light. So its not a surprise.

And with the tension, the neck has been extra tight. So not sure if
that is part of it.

Donna:grouphug:

Donna,

My sister wears rose colored sunglass when she works under florescent lights.
She tells people that the dr told her she has to wear them.


M

when i have to work with others around, with a migraine ongoing, whatever light there is is usually too bright, period.

i wear mirror shades (that filter a lot of light, especially blues), and/or a brimmed hat/cap depending on the direction of the light. sometimes i don't bother saying anything. other times i might tell someone i am having light sensitivity, end of story. i get phonosensitivity too, and wear earplugs, but i try to hide that. :o

for the computer, i have a special setting - apart from dimming my monitor. you can go into the desktop properties and hand pick colors for each windows component, and then save it as a "theme" so you can switch back and forth from it if you want. i have one that makes all my windows tones of beige/brown etc. Windows apps use the colors from the active theme. So, for instance, when i open Microsoft Word, I get a dark beige document, instead of the stupid glaring white page.

Oh btw Donna, sometimes i am rather photosensitive even when I do not have a migraine. I've read this is also fairly common with migraineurs. But also be aware that some meds can increase photosensitivity. I personally found that gabapentin did, for me, even if (ironically) it reduced my migraine incidence. So if the light sensitivity started soon after some med changes... that could be a factor. :hug:

~ waves ~

Thanks Waves

I need to change the colors in here. So I will try that.

And I never thought of it that way. But a lot of the reason I don't
like Microsoft outlook, is the white screen. I can't read it.

So I always use the yahoo screens. But I'm required to use the calendar
and something we have EIQ on our computers. But I have trouble with
them. So I always send emails through yahoo.

But if I can figure out how to change the colors it would help.

Today the sun has bothered me. But I also couldn't sleep last night.
And I've had about 4 hours all together. Ugh.

Donna:grouphug::hug:

i have an idea
 

Dear Donna

I use various things for mail but i just opened outlook to see what it does with colors. it uses the theme colors too, like word and excel. so it was all beige and brown, lol.

by any chance do you use still Windows XP? if so, i could mail you my settings file to try out... if it suits you, it will save you a lot of work. ;)

I used to love going out in the sun and now i have to hide from it. :( It sucks doesn't it. It is worse when you don't sleep enough. i hope you get a chance to nap today. :hug::hug::hug:

~ waves ~

Wish I did use XP, we have windows 7.

Donna

:grouphug::hug:

ack!!! yeah... not too many folks are on XP any more... :o

oh well. the school uses 7 but i've finished my classes.... sigh. well perhaps there is someone there that can help you. if there isn't, at some point we can IM if you want, and i could help you online "live" ... best i can do i'm afraid. i think writing out instructions would be iffy in case win 7 has minor differences that might be confusing unless i get feedback as you are doing it.

good luck and let me know...

:hug::hug::hug:

~ waves ~

we have xp:)

Donna, I'm very sensitive to sound and also to light.

I'm using 7. I'll look into it tmro and see if there are some ways to help.

I know there are filters that can fit over the computer screen to cut down glare. There are also the lenses that Mari mentioned.

Someone in the TBI forum posted some link to a programme which reduces glare. I tried it but it didn't suit me. I found it too dark.

I will look into it with our win7.

:hug: Feel better. Good to be busy though.

Donna, the only things I can find are these...

Go to the Start button bottom left of screen.
Control Panel
Appearance and Personalization

Change the Theme
Change Visuals and Sounds on your Computer

Basic and High Contrast Themes
[I only have 6 there to choose from]

also

Control Panel
Ease of Access

Let Windows Suggest Settings
[there's a little questionaire where one ticks boxes regarding eyesight, dexterity, hearing, speech and reasoning]

or

Make the computer easier to see
[this is really just for contrast and takes you back to Themes page]

_______________

Don't know if you know or not, but neurotalk has its own Themes. They're down the bottom of the pages in the thick line. Quick Style Chooser. Mine has a very white background which is difficult to view with a headache or migraine but some of the others are much softer.

yes! Neurotalk theme also!
 

Dear Donna,

yes, i forgot to mention. The Neurotalk theme i use is Desert Sand. Neurotalk calls it a "Forum Skin."

To change skin :

• click on User CP
• click on options
• scroll to the bottom of the page
• in the section called "Forum Skin" there is a drop down box... click on it and choose from the available items. (I recommend Desert Sand for low intensity).
• finally, click "Save Changes" at the bottom of the page, to view the changes and keep the setting.

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

The Windows theme i use is one I created, not one of the one's listed in the available Windows themes. Win 7 probably lets you create your own also - i can't imagine they would remove the functionality (although... you never know!!!). However it is a bit of a process because you literally pick the color for each component - buttons, menus, menu text, app space, title bar, etc etc etc.....

I might have to go back to the school again for some documentation. if i go, i will ask for permission to test my theme file on one of their machines to see if it's Win 7 compatible.

~ waves ~

neurotalk "skins"
 

Dear Donna

yes! i forgot to mention that The Neurotalk theme i use is Desert Sand. Neurotalk calls it a "Forum Skin."

The quick style chooser at the bottom of the page, changes your style for a single forum session. When you come back, say the next day, it will be back to whatever your normal setting is. However, the style chooser is really nice for quickly viewing different skins. If you find one you prefer to the default, you can make it permanent from the User Control Panel.

To change "Skin" setting permanently :

• click on User CP (near top of page, horizontal menubar, leftmost item)
• click on options from the lateral menu that comes up
• scroll to the bottom of the page
• in the section called "Forum Skin" there is a drop down box... click on it and choose from the available items.
• finally, click "Save Changes" at the bottom of the page, to view the changes and keep the setting.

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

The Windows theme i use is one I created, not one of those listed by Windows. Windows 7 probably lets you create your own also - i can't imagine they would remove the functionality (although... you never know :o!!!). However it is a bit of a process because you literally pick the color for each component - buttons, menus, menu text, app space, title bar, etc etc etc.....

I might have to go back to the school again for some documentation. if i go, i will ask for permission to test my theme file on one of their Win 7 machines.

~ waves ~

Ahh, very cool. I couldn't find where to do that earlier. Just found this in google.

http://windows.microsoft.com/en-US/w...create-a-theme
Create A Theme (with Instructions)

Thanks everyone,

So far I've been working through the screens. I changed some things
and got different screens. That seem to be working.

So its helping.

Donna:grouphug::hug:

Cool!
 

That's great, Donna! :) Well done! :yahoo:

That's what's important... that you end up with something that works better for you. :circlelove:

~ waves ~

p.s. Btw, I learned, via Lara's link, that XP themes are not in fact compatible with Windows 7. :o oh well. at least now we know.

I had a return of the headache this afternoon. So I've been laying down.

Really have to figure this out. I have no clue why they are returning like
this. So hoping the appt on Thursday hellps.

Donna:grouphug:

(((Donna)))

I hope they can help you on Thursday too. :heartthrob: I have my fingers crossed for you. Meanwhile, yes, take it easy, stay horizontal in the dark as much as possible, and I hope that stupid headache goes away on its own, or at least lets up some!! :o

~ waves ~

Feel better fast!

sorry donna for the headaches.
I wish you felt better.
Aren't there certain foods that can trigger migrains?
bizi

Yes there are certain foods that can trigger migraines.

But I have never really been one that had that problem.

Other than drinking coffee with caffeine in it. I never had the
problem with pop in it. Other than drinking way to much.

Or not drinking any. Now I have to be careful and make sure
I do drink at least one cup or bottle of pop a day with caffeine.

Or I definately end up with a migraine. But that has always been
the case. I have been very careful about that though.

I do go through times that I try with none, or more but I really
don't see a pattern.


(Had to cancel a trip to help a parent that was way to far to drive
this morning) Don't feel this trip was exactly warrented in a headache
anyway. This mom can do this one by herself either way. But this
wasn't a case conference either. Donna:grouphug::hug:

Hang in there
 

Hey Donna,

I am glad you canceled your trip... really sounds like you could use the rest. Supposedly foods with tyramine can trigger migraines (lamb, bananas, chocolate) but i've never had a problem with them either. Nor caffeine. My mom keeps wanting to blame the migraines on the caf, and i keep pointing out that history-wise, caffeine use & migraine frequency just don't correlate.

There is of course a caffeine withdrawal headache, which can occur if you are used to consuming lots of caffeine and stop suddenly (or someone slips you decaf). Even non-migraineurs get those, but i suppose with us it could(?) evolve into a migraine. I still haven't figured out if/how regular headaches can evolve into migraines. :o A question for the neuro when i find one lol...

Caffeine is weird coz too much can cause migraines, and some folks are sensitive to low amounts. Yet, it is used in some migraine medications, and there are folks that treat their migraines using caffeine only!
(Lucky them, eh?! Just pick up some No-Doz and y'r set!!! ;):o)

(((hugs))) to you today... counting down... only 3 more days to your appointment, today included. :heartthrob:

~ waves ~

Had a massage yesterday. Wow, my neck back and shoulders are and
were really bad.

So much so that my shoulder blade on the right is still really bad and sore.

So I will keep a eye on it. Interesting.

I am watching the migraines they just aren't good.

Donna:grouphug::hug:

Also this has been somewhat a sad couple of days.

I have one of my favorite long term PSV's (Parent Support Volunteers)
that is retiring. I have known for a while now it was coming. But have
hoped it wouldn't for a while. She has been my mentor.

And was my son Danny's advocate when I was still learning.

Donna:grouphug::hug:

I am sorry for you that she is retiring ask her if you can still keep in touch with her.
((((HUGS)))))
bizi

i'm sorry Donna
 

I think that Bizi has a good idea... sounds like she might like to keep in touch also. :hug::hug::hug:

Hope your appointment goes well tomorrow! :heartthrob:

~ waves ~

Dear Donna
 

When you feel well enough...

I'm wondering how your Thursday appointment went?

:hug::hug::hug:

~ waves ~

When it rains it pours they say.

I ended up sick Wednesday night. I've been out of it for two days.

Didn't have anyone to do my presentation on Thursday morning
so I had to cancel. Ugh.

I also of course had to cancel my doctor's appt. Will remake one
next week. Just called the office, early in the morning and left
a message.

So I finally feel some better today. But seems some form of the
mess got everyone in the family at the same time.

Me completely. Dale a good bit of all of it. But he worked anyway.
I wouldn't take it to the others I was presenting for. OR couldn't
either one.

And Derrick had a head ache.

Donna:grouphug::hug:

Get well soon Donna and Family!
 

I hear that there is a nasty virus going around that hits hard both ends, very contagious and feels like food poisoning. yikes.
feel better Donna.
bizi

That would be the one that is going around up here right now.

I seem to still be under the weather to a degree.

I haven't tried to remake my Migraine appt. Because I need to
be sure I can keep it. So I'm waiting just a little while.

I have a couple of Case Conference's scheduled this week.

That I will attend.

Donna:grouphug::hug:

hoping you get better quick
 

Dear Donna,

I hope you recover quickly so you can make another appointment for your migraines.

(((hugs)))

~ waves ~ who is hopefully out of the woods for at least a week now... :o

Okay I seem to have gotten lucky.

When I called in yesterday they had a appt tomorrow at 10 am.

I took it.

So today I get a call from my primary doctor that I had a appt
tomorrow with them.

Ugh, had to cancel that one. It was almost the same time.

Anyway I did that because the migraine doc is more important
right now.

Donna:grouphug::hug:

Hi everyone.

We are trying a upage of my topamax to see if this helps.

50 mg at night more.

50mg in the morning and 100 mg at night.

Donna:grouphug::hug:

Wishing you well on the new Topamax dosage
 

Dear Donna,

That's great! :heartthrob: Sorry you had to cancel your PCP appointment but i can relate... migraines interfere with everything you do... :(

How long will it take for you to know if the new dosage is working? I mean, will it help pretty much right away or does it take several days... weeks?

I really hope this does the trick! :hug::hug::hug:

~ waves ~

Well I can't say for sure.

It usually only takes a little while.

But he wants me to let him know if its not helping after 6 to 8 weeks.

But I have a appt in 12 weeks. So we will see.

Donna:grouphug:

hope it "mostly" works soon!
 

Yeah. That is similar to my experience several years ago with gabapentin as a prophylactic. It helped some almost right away... but it helped a good bit more after about 2 months on it.

A general drawback about gabapentin for migraines (and from what I've heard, for seizures too) is it must be taken at regular intervals for it to help. Also, 900mg was not enough for me (I had breakthroughs when I forgot a few doses. :rolleyes:)

Well I hope the extra Topamax mostly kicks in a lot sooner that 6-8 weeks for you, even if takes a little longer to reach maximum benefit. :hug::hug::hug:

The nasty neuro here that I saw several years ago, after i got her to stop screaming so i could sit down and talk... finally said as long as gabapentin was working for me that would be better because Topamax was "a more complicated drug." I asked her what she meant and she shook her head and said to keep on with the gabapentin. I said I was still having breakthroughs and was hoping to try something different. Shook head again.

(Now I wonder if she is any relation to Ginnie's foot surgeon. :rolleyes::o:()

~ waves ~ with well wishes to you, Donna