So far so good.

[Crystal11]

Hello everyone. I forgot to write up some on how I've been doing. I talked a little about my annoying migraines and some other things I've asked you all about, such as XR and weather or not it makes a difference in the way people feel etc.
So, I am now on Lamictal and asking for Lamictal XR when I go, plus complain about migraines that aren't being treated as of now- besides ER visit which I told nurse that I just don't want to do.
I take Keppra XR for a while now, 3 or 4 years and am off Tegretol XR totally which is nice. Worried some about liver damage but all my tests CBC etc were normal and never had troubles with it.
I assume the neuro didn't give me any medication for my migraines because I am on two anti-seizure meds and on Propranolol for my heart/PACs condition, nothing serious. But I've learned that both E meds and Propranolol help in reducing migraines and migraine pain.. Well either I'm not on enough or I just need something to take as needed that is more specific.
I wrote earlier, probably a week or so ago about a serious migraine that almost forced me to go to ER- but I had Trezix which was given to me for pain of a Shingles outbreak- on my arm which is so so sensitive and I now have PHN/Post Herpetic Neuralgia which can hurt and anytime severe to mild- and the rash is gone and healing leaving markings just like Chicken Pox on my arm! It is the adult version of Chicken Pox but worse and painful.

So my friend and I were shopping when a Migraine suddenly started up. So I took two Trezix and one Propranolol and boy.. it stopped it within 10-15min and we went to eat quickly since I had no food for the morning. Meds without food isn't too good for me..
So- so far I've been getting some relief from my seizures/complex partials with occasional aura.
The migraines are getting annoying but we will be having a little chat with neuro later next month. They moved me up for next month instead of the month after. Just can't wait that long!
Seizure control - better, Migraine control not so good but not daily.
I could not imagine having them daily- it would be horrible.
The last one I had took me 4hrs of rest in bed without moving until I could get up and do some of the most basic things- such as eat, go to the bathroom, take care of my guide dog and other basic daily things.
My sis and friend helped me a lot and we help each other a lot as it is.. we have a good family here.
The Migraine itself lasted a few days- which was good and because I caught it in time, and used an analgesic medication and Propranolol (lowers blood pressure), it stopped it from becoming serious.
I was about to faint or it felt like it- in the store. Then I was dizzy to the point I was sitting on the floor not even caring..I didn't care if people were looking etc- I wasn't happy at all. I didn't talk or get upset but my friend new something wasn't right. I told her we need to go.
I went to the water fountain and took my pills the best I could. It takes skill to do this, or at least for me!

So far so good in my opinion. Seizures in better control which is lovely! Migraines flare up here and there but its manageable with appropriate meds- I will see what neuro wants to do about it later in June/ I told Sis and friend that I feel like I exchanged seizures for migraines!! LOL but really its just how things are getting taken care of with meds etc..
I would actually take a seizure over a migraine even though I get a migraine after a seizure sometimes but not always.

Take care everyone
Crystal and her guide Umbro

 

[Endless]

Crystal,

The migraine control (sort of) is good news (I think?) I'd feel better if you weren't getting migraines at all. They are MISERABLE. I'm interested to hear what your neuro says and what medication he puts you on.

I used to get them almost constantly. Found out they were postictal. Now don't get them at all. And ressearch shows that trileptal is one of the meds that doesn't help migraines. http://www.drugs.com/news/epilepsy-doesn-t-prevent-migraines-10981.html

I guess seizure control is taking care of the migraines, which makes me doubly happy.

I'm wishing for the same kind of outcome for you.

 

[Nakamova]

Hi Crystal -- you mentioned that you hadn't eaten when your migraine kicked in. If low blood sugar is a trigger, you might want to get in the habit of carrying food with you to tide you over. It doesn't have to be anything huge, maybe just a piece of fruit or some trail mix, or a breakfast bar...

 

[Crystal11]

I will be bringing some things with me- I am a type of person that eats every three hours lol.
I will be watching very closely to what I eat, what time of day it happened, how I felt and how and when it stopped and what I did to help it.

I will write some about neuro visit later on this month. I hope all goes well. I know its not a tumor or anything since I assume MRI/EEG were pretty normal. But need to ask about that too.

 

[Endless]

Hey, Crystal,

You go to an epilepsy center, right? So I assume they did an epilepsy protocol MRI? It takes thinner slices and shows up more than a regular MRI.

Glad to hear you are taking food with you! I keep Zone bars in my purse, just in case I run out of healthy snacks (carrots, hummus, etc.)

 

[Crystal11]

I did have a seizure-protacol does with my MRI. They did the best they could but I just couldn't get myself to take the contrast dye. I said that I had my twin who suffered burning all over her body and that scared the crap out of me- then my friend said "Well when I had one, they tried in my arm, in my neck and in my vain that blew up." I said SHUT UP!
So I thought to myself- well many people have the contrast done and they are probably okay.
So I get there and change into my pretty dress (LOL) and had the nurse show me the MRI machine first- I am deafblind/residual of both- and I became oriented in my space and the machine and we set up a communcation system since I am not allowed to wear my hearing aids.
So- I told the nurse that I had a staple in my heart for a PDA/Patenductus Arteriosis repair. I know I didn't spell that right sorry!
She said "Well as long as you had it put in two or three months ago you should be fine"
I told her that it was put in when I was 4hrs old but scared to have MRI done with a metal staple in my heart! I told her that when I had a CT done, they put a lead vest over my heart so nothing would happen.
Anyway- being freaked out about this already, I felt like screaming or leaving or something. So I stayed there, rested and almost fell asleep. The machine was loud but I could not heart it- but I could feel it moving and everything.
She came in and my friend signed in my hands "They are going to do the constrast now and there are only 6 more pictures to be taken." Then I felt the nurse put the line and other items needed to put in the contrast. Boy.. I jumped up and forgot that my head was being held down. I told her that I want out and that I just can't stay here much longer. I started breathing a little fast and really wanted to cry- but held everything in the best I could. I told her that I just don't want it and that if the pictures are bad, let the doctor know that I wasn't comfortable with the contrast part.
She told me that the pictures already taken should be just fine and the neuro can see just about anything on it. Contrast just makes some of the pictures more detailed.
I didn't get a call back from my doctor but it doesn't mean that EEGs or MRI etc aren't possitive for something.
Wrote down in my seizure journal my migraines and questions to ask etc..
Wow long story here!

I will be brining food with me that is dry and won't be damaged by hot weather. Today we walked for most of the day downtown in the hot hot Texas weather! Tired now but can't settle down either.

I appreciate everyone's comments here- it will help me improve how I do things and what to look for etc. I usually do have suger lows- but never been diagnosed with hypoglycemia but Mom had it. I do usually bring candy but I know it only lasts so long in your system before you body screams for food.
Will work on the snacks for traveling.

Will be going to Washington again for Deafblind training and advocacy.
We will not see the President again this year- but we will see the Executive Branch of the White House and discuss with them about deafblind issues that are important in the education field..and much more!

Take care everyone
Crystal

 

[Endless]

Wow, what an ordeal on the MRI. Sorry things are so hard. It should be easier.

Hey - you saw athe president? Which one?

 

[Crystal11]

I saw President Obama and had a meeting in the Oval Office with him.
There are several articals I have written about it as well have composed some music for it- the trip to Africa some of the group members took for Helen Keller National Center.
There is a link on it I think on their website where this should be the formal picture of us all together- my guide dog Umbro is the only punk that didn't look at the camera LOL hehehehe.
We won't be seeing him but we will be going to the Excutive Branch on the White House to speak with the Coat Colition and director of education from the White House which is awesome becaues he is totally blind. He was the guide into the President's section of the White House- so so neat of an experience.
Will write about it more too when I get home and back to CWE and visit with everyone.

I might be able to sneak in some time to get online there and can check in with you guys too,

Take care,
Crystal