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Old 08-19-2009, 11:38 PM
Denae Denae is offline
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Default kind of o/t but not really- seizures and me

I am shocked, heart broken and numb all at once. Those of you who are on facebook already know that I have been having some really odd stuff go on with my head for the last two weeks.

Last sunday I took Riley to the pool came home and was sitting in her room watching tv with her and out of no where I got this odd dizzy/buzzy/slight headache feeling. It lasted only a few seconds. When it ended I was left with only a slight headache even that ended with in a few moments. I passed it off as possible dehydration, went to get a drink and just relaxed with her the rest of the day. It did occur several more times that evening. I went to bed, woke up and seemed fine. Within a few hours of being awake it started again. The exact same feeling.

I really can't say it is a "dizzy" feeling, more of a fuzzy head for a moment. The closest thing I can call it would be to say that it is like when you are drinking and start to get a little tipsy except add a slight headache and the tipsy part only lasts a moment and you are left with a slight headache. There were a few times that the headache was worse and my vision was blurred on just the left side. I was freaked out, called my primary care doctor. She sent me for an MRI, it was clear. They said it was probally a migraine and suggested I take an imitrex. So I did- I took several imitrex. nothing. I called back and let them know that it was at the point that it was driving me crazy, making me sleepy and I couldn't take it. up until that point I hadn't taken anything to prevent migraines since they are pretty infrequent for me and the imitrex takes care of them pretty quickly when I do have one. She called in topamax. I started taking it.

By Friday I am no better. Ri's birthdya party was Saturday and I am really getting bothered, Friday night it is actually a little worse, my fingers were tingling a little with some of the "spells" I went to the ER.

-as a side note, every one there (and yes, I do mean every one that I came in contact with) asked "Hows Heather Riley" "we have been so glad not to see her in trauma" "Aren't you that cute little red heads mom" Our favorite male nurse came in to do my iv said "what are YOU doing here" then proceeded to tease me to death about what a baby I am about needles.

anyway, I went to the ER scared that something was really wrong, this was not like any migraine I had ever had. The ER doctor treated me for a migraine, gave me the meds she has in the past when the imitrex didn't work (once) and I went to sleep. woke up saturday morning and was relieved that my head felt better, not fuzzy at all. As I was starting my day picking up balloons the first "spell" hit me. I wanted to cry. Once it started they kept coming. I made it through Ri's party and her sleep over I promised she could have.

Sunday evening I was at the bottom step I am not sure exactly what order things happened in, but I got that fuzzy feeling, kind of blanked out a second, hit the floor, and pee'd my pants a little. It all happened in a split second. I sat on the steps trying to pull myself together for a moment, my head was throbbing. I got up and laid down and took a nearly 3 hour nap. By this point I am already highly suspicious that this is not a migraine.

When I woke up monday morning it started before I even woke up, I laid in bed almost in tears wondering how in the world I was going to get out of bed, much less take care of Riley. I laid there until the "cluster of spells" passed. Once I got up, on a hunch I took one of Ri's klonopin and lo and behold my head cleared up, for the first time in almost two weeks I had about 8 hours that I felt human again. I had called my primary care doctor and let them know what had happened, they made a referral to a neurologist for me. Unfortunatly the first available appointment wasn't until next Monday.

I called and was able to get in on a cancellation today.

Bottom line, I explained everything that has happened, he has scheduled me for an EEG but has also told me that these are seizures he just wouldn't commit to exactly what type- simple partial, complex partial or both. He is taking me off of the topamax, it was making me tingly and stupid, since I do have migraines as well he wants me to try lamictal so I started it tonight. I will be so glad to never take another topamax- I don't know how Riley takes any of that stuff, its making me as crazy as the spells.

I shouldn't be so upset, I knew before. I just had hoped he was going to laugh and tell me it was impacted sinuses or something simple. I do not deal well with not being in control and not being able to handle what I need to handle. Over the last two weeks everything has gone by the way side. I did make it to Rileys neuro appointment, but just barely made it though, I haven't even started the IEP battle and school here is suppose to start next week. I think with this and her med changes we are going to home school one more year for certain.

I haven't been posting much because the constant seizures are driving me nutty and until they get under control I will likely only do short posts here and there.
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Old 08-20-2009, 12:30 AM
RathyKay RathyKay is offline
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(((Hugs))) I haven't made it to FB yet to check on you. I'm glad you got in to the neuro early. Sorry for the daughter / mother deja vu. I know things are really stressful right now. I'm glad the party is over. (((Hugs))) and continued prayers.
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Mom to Samantha (11), Claire (9), and Tom (7). Tom is developmentally delayed, with poor vision and poor fine motor skills. His seizures are fairly well controlled by diet - dairy-free, gluten-free, rice-free, and coconut-free. Next on the list: soy, nuts, tomatoes, peanuts, peas, eggs, and melons.
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Old 08-20-2009, 08:56 AM
Ladybug Ladybug is offline
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My heartfelt sympathies for the medical issues you are suddenly facing. The fact that this all came on so suddenly is scary. Thank you so much for sharing what an experience is like, especially since some of our children here cannot express it in words for us. This is certainly not what you need to be dealing with now on top of everything else. I'm sure stress is a huge trigger in your case, yes? Please keep us posted. Prayers for you and more prayers for you. You are such a pillar of strength for your family.
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Old 08-20-2009, 11:09 AM
kimfurd kimfurd is offline
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Default Praying for you Denae!

Denae,
I've been reading your posts for more than four years now, and you have always held hero status in my heart because of the way you care for your family. I just can't imagine how overwhelming it must feel to be dealing with health issues of your own in addition to all of your other responsibilities!

Please know that I care and that I will be remembering you in prayer - asking God to give the doctors wisdom as they treat you and that you will soon be feeling much better!!

Gentle hugs to my hero!
Kim
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Old 08-20-2009, 11:17 AM
lacyndarella lacyndarella is offline
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Hon, I am so sorry that you are not feeling well. I hope that the med works for you.
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Old 08-20-2009, 12:17 PM
langansmom langansmom is offline
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(((DENAE)))

Just when you think things can't get worse!!! I am soooo sorry. I hope they are able to get rid of these nasty things for you soon. I agree that it's scary that it came on so suddenly- but glad that the MRI was clear.

Hang in there and know that we're thinking about you!!
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Wendy, mom to Langan, my little mystery girl born 7/19/02, has intractable seizures, global delays and CVI, vns implanted 2/10/06, on a small dose of lamictal and- as always- fighting for seizure control, and wife to Jon, the other love of my life.
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Old 08-20-2009, 06:25 PM
PaulaScott PaulaScott is offline
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Hugs and prayers -- I'm sorry you have all this to deal with in addition to everything else.
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Emily has CP, CVI, GERD, epilepsy, developmental delays, and is feeding-tube dependent due to viral encephalitis as a newborn.
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Old 08-20-2009, 11:18 PM
Paul from Australia Paul from Australia is offline
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Dear Denae,

That is very upsetting news. We are so sorry. Hopefully the doc's will get all this resolved very quickly with the minimum of medication.

Denae, you know what we think of you don't you = you are our hero with all those kiddos.

We will pray for quick resolution.

With love of course,

Paul, Alison and Grant with his 18 aunties.
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Old 08-20-2009, 11:22 PM
AnnMarie AnnMarie is offline
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(((((HUGS)))) Denae, I hope it turns out to be a fluke. Keeping you in my thoughts and prayers. AnnMarie
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Old 08-21-2009, 04:11 AM
MumtoT MumtoT is offline
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Denae,
Talk about the pits!
Take care sweet and I hope the new meds help
Love Yvonne
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