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Thread: EEG

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    EEG was done yesterday. she had a very difficult morning. It was sleep deprived so she was of course tired but also a lot of "complaints" "warm head" tired legs... She wouldn't even walk when we got to the hospital. Luckily I had her wheelchair with us. She hated the process of attaching the wires but the technician was great and worked around any position she was in and all her movement. She was very quick. After that she was OK. Now we wait for the results!

    Memorial weekend Kelly and I had a wonderful getaway! My sister took us to Ogunquit Maine. It was amazing I've never been to Maine. It is the most beautiful coastline I've seen. Such a different experience from our yearly vacation to NJ (which we do love).The shopping was awesome and we did lots of walking. It's the first time I've left Kathleen for 2 nights. Dad and Patrick did a great job though. They both learned how to Cath. her and do her flush. I left all her meals ready( I don't think they can be as careful as I've learned to be about the gluten), and clothes out for 3 days. She did great too, but did say she missed me.
    Mary Grace
    Last edited by mg12061; 06-03-2014 at 04:51 AM.

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    ((((((Mary Grace)))))) ~

    I'm glad the EEG is over. And I'm so sorry that it was difficult for Kathleen. How long do you have to wait for results? We usually get them immediately from the neuro, but we're generally in the hospital, when we've had them done. I'll be waiting with you, be assured.

    How wonderful that you and Kelly had a couple of days together to get away! Thanks for the great photos! That light house photo is classic Maine!

    In the early 70s, we took a family vacation throughout the East and visited Arcadia National Forest. It's amazing (or it was then). One of my other favorite Eastern coastal destinations is Cape Cod. That memory is from the 70s too!

    Congratulations to Dad and Patrick for learning how to care for Kathleen! Awesome! Maybe now you can sneak in a few more getaways through the year!

    Please let us know when you receive the results. Healing prayers are always with you ~

    Love & Light,

    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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    Thank you Rose. It was difficult but luckily the process was pretty quick and we got it done. My worst fear as that the technician wouldn't get them on and give up. Sitting with the wires on as no problem she relaxed.
    The neurologist called yesterday and the EEG showed no seizure activity. Good news... Now we wait for the next tests and a visit with the neurologist the end of June. Her complaints still continue. Kathleen's PT saw her today and she thinks there may be some swelling in her knee... I'll keep an eye on that...
    Mary Grace

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    ((((((Mary Grace))))))

    Very good news that the EEG didn't detect any seizure activity. And now, more waiting, while symptoms continue. Man! I just wish we could figure this out for sweet Kathleen!

    Here's something ~ and it's a very long shot ~ the vasovagal nerve.

    Recently, a friend of mine had a colonoscopy, during which the doctor pressed on the vaso vagal nerve, and her heart rate dropped.

    Also, in 2005, when Jon was in the hospital, he was placed in a 4 bed "old man" ward, awaiting a private room, after release from ICU. (I know ... it was just awful ...) One of the elderly men was constipated. He got up, went to the bathroom, was in there for awhile, came out and nearly collapsed. We got a chair for him, and then he began, what looked to me like seizing. And I had seen all kinds of seizures over a period of 35 years, every day with Michael for 22 years. When the man's doctor arrived, he diagnosed vasovagal syncope.

    I could be completely out in left field here and barking up the wrong tree (to mix metaphors), but I just thought I'd toss it out for pondering.

    en.wikipedia.org/wiki/Vasovagal_response

    I hope that link works. I couldn't paste it after I copied it, for some reason.

    Do a Google search for Vasovagal Response. There's plenty of information out there. Maybe it will strike a chord? Or it could be another thing to rule out.

    Keep the faith. Healing prayers always being sent ~

    Love & Light,

    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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    Thanks Rose, I looked up the Vasovagal response and it seems like there would be fainting with this. This has never happened with Kathleen. I think a big worry I have is that this could possibly be MS. When I look up any of her symptoms it's the first thing to pop up. From her eye complaints to her butt pain. It's also considered a autoimmune disease and I know since she has 3 diagnosed already one more is common. I haven't even mentioned this possibility to anyone because I don't even want to say it out loud, I feel crazy thinking that she could actually have this. I figure the tests will put my mind at ease. SSEP and MRI are 2 tests that help diagnose this among other things. She made it to school today and yesterday but she came home about 9:30 yesterday.
    she has the option to use a wheelchair if her legs are tired.
    Mary Grace

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    ((((((Mary Grace)))))) ~

    I know that fainting is commonly associated with a vagovasal response, but not always. You've described Kathleen as being weak, unsteady, and very sleepy. That's why I postulated it as a potential rule in/out cause for her symptoms.

    My friend, who had a low heart rate during her colonoscopy didn't faint. The elder gentleman in the hospital didn't faint. Both were diagnosed as vasovagal responses.

    Perhaps you could mention it to Kathleen's neuro. He'll probably wonder what made you think of it, and you can tell him your kooky friend on CN is just doing a "Could It Be This?" search.

    Are the SSEP and MRI scheduled? The sooner the better, so that you can get more answers.

    A question you might want to pose to Kathleen's neuro on her next visit is: Is it possible that Kathleen's episodes could be seizures, and that she wasn't having them at the time of the EEG, so it didn't register? Would it be beneficial to do an ambulatory EEG with Kathleen, if she'll tolerate it? (I guess that's two questions!)

    I understand so well about not wanting to say out loud what you're thinking. We can't stop our minds from going there though, can we? What if it's this? What if it's that? I mean, what do we pray for when we're looking for a cause? Please don't let it be this or that, but please let me know what it is. I know. It's so hard.

    ((((((Mary Grace & Kathleen)))))) ~ holding you both close in prayer ~

    Love & Light,

    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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    Hi Mary Grace and Rose,
    I am so sorry that your Kathleen has been having such a tough time! I have had vasovagal myself and so has my niece. In my nieces case, it looked very much like petit mal seizures, she was hospitalized and they thought she had a brain tumour but it turned out to be vasovagal. In my case, I get hot, nauseated and sometimes faint, but not always. I can feel my blood pressure drop. One time a long time ago, a doctor observed that after a big meal, my blood goes to the gut to digest food, away from the brain and that made sense to me at the time (it often happened after eating and my blood sugar was normal and I definitely like to eat!). Anyway, just some thoughts. I will pray it's not MS. Mary Grace, I am so happy for you that you went to Maine! My mother grew up summering at Kennebunk and she just loves it there. I've been a few times - it's so beautiful. Did you go on that incredible sea walk at Ogonquit, I forget what it's called.... Sending love to my CN friends, xox Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Donna and Rose, Thank you both. I read a bit more about the Vasovagal nerve and will keep that in mind when I speak t her neuro. Very interesting... I also posted about the possibility of MS on the moyamoya board and surprisingly many MM patients were first diagnosed with MS. Years later that diagnosis was dropped and hey were diagnosed with MM. One patient was diagnosed with MS years after the MM diagnosis. So keeping in mind that could this be trouble with her MM. Originally it involed 2 carotid arteries of the brain but there are 4 so there is the possibility that the other 2 are involved.
    Rose that's exactly what I say in my head "please don't let it be this or that" but "please let me know what it is". Thank you for the support and the prayers.
    Donna, Are you referring to The Marginal Way? We did walk this and it was just amazing! So beautiful!
    Mary Grace

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    ((((((Mary Grace)))))) ~

    Would it merit a visit to Kathleen's cardiologist to rule in/out that her symptoms are related to MM?

    Thanks ((((((Donna)))))) for sharing your and your niece's experiences with vasovagal response. I'm so sorry that you experience this. Is there any remedy?

    I feel a little less like I was stretching with considering this as a possible cause, but now that Donna has given her examples, it seems like it would be worth mentioning to Kathleen's neuro.

    I tried a Google search for cecostomy+vasovagal and got nothing. I just wondered whether her cecostomy could have any effect (eg. pressure) on the vasovagal nerve.

    Then I Googled Synthroid (levothyroxine, which Kathleen and Donna take) +vagovasal and found this:

    http://www.ehealthme.com/ds/synthroid/syncope+vasovagal

    It's a tiny percentage, and it could just be that all of those reporting vasovagal response have another cause for it. But I thought I'd toss it out there anyway.

    Wouldn't it be great if you could gather all of Kathleen's doctors in one room and describe her symptoms, then ask them: "What is causing this? How can we make it stop? I need an answer! You have 10 minutes!"?

    We here at CN can put our noggins together to explore possible explanations, why can't the physicians with all of the knowledge, training, and experience do the same thing?!

    I'll keep thinking and pondering ...

    Keep the faith, Mary Grace that the answer will be found and easily treatable.

    Love & Light,

    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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