Medical Forum / Diseases and Disorders / Epilepsy / December 2005
EEG MRI New Doc
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Julie - 15 Dec 2005 06:13 GMT Hi Gang, my husband and I went to visit my new doctor. He a Stanford-trained epileptologist and the Medical Director of the Idaho Comprehensive Epilepsy Center, which just opened this fall. We are very impressed with the time he spent with us and are looking forward to a change in medication. First I will have a sleep deprived EEG and then a MRI. Both are scheduled for this Friday. I was surprised they were able to get the tests scheduled so quickly.
An interesting thing I found out is that the possible reason I had so much trouble attempting to go off phenobarbital the last time (about 16 years ago) is because it is very difficult to go off this particular drug. He said it may take a year. The last time the doctor had me going off phenobarbital and on to another drug within a matter of a few weeks. I found my notes from way back then about all the side effects I was having on tegritol and then on depocote. It was quite a list - my husband and I had to laugh, because my husband described it as a living hell! One of my symptoms which I had circled and wrote in bold letters was uptight irritable - emotional. Gee I wonder why he thought it was so terrible : - (
This time we are going to try keppra or topamax, but first we need to see what the tests show. He said that the MRI technology has really improved over the years and the drugs have as well. So if one drug doesn't work we have others to try.
He also told me that if I do manage to go off drugs all together there is a possibility that I will start having seizures again and then there is a small percentage of those people who then cannot gain control of their seizures with medication. It was a very small percentage, but something for me to think about.
Take care, Julie
G.Ross - 15 Dec 2005 06:46 GMT > Hi Gang, my husband and I went to visit my new doctor. He a > Stanford-trained epileptologist and the Medical Director of the Idaho [quoted text clipped - 3 lines] > MRI. Both are scheduled for this Friday. I was surprised they were > able to get the tests scheduled so quickly. I just thought you were away (on vacation). That is quick for test schedules. I had heard in Toronto that the wait times (except in emergencies) for MRIs, CAT scans, and even EEGs was measured in months at present. (New Politicians are promising to cut those and other Elder operations if they're elected next Spring.... ) MRIs are also used for other things than Brain Scans, and some of the machines here (in about 3-5? hospitals) are in operation 24 hours a day. (There was an issue of Scientific American about 4? years ago on The Brain. The cover has a Green photo (MRI?) of a Brain on it. Libraries might carry back issues a number of years if you want to read some (out of date by now?) stuff on it. Or there's likely stuff online somewhere. Few things can replace a Real one-on-one Neurologist though. )
> An interesting thing I found out is that the possible reason I had so > much trouble attempting to go off phenobarbital the last time (about 16 [quoted text clipped - 7 lines] > was uptight irritable - emotional. Gee I wonder why he thought it was > so terrible : - ( *** Sometimes it might be the pill, sometimes the area where the seizures start up. Tegretol is one of the pills that requires consistent use and slow dose increases or decreases if those are changed. Also 'back then' they might have been using the Plain version and not the Controlled Release and Extended Release ones that are the only? ones used now. The older Tegretol type, or without control, can produce a rollercoaster of Moods and Control, many times without being aware we're even having the Mood Swings.. others notice it, be we might not. /
> This time we are going to try keppra or topamax, but first we need to > see what the tests show. He said that the MRI technology has really [quoted text clipped - 8 lines] > Take care, > Julie Once I got to this stable level I'm using (before I was online), we had never discussed my ever going off or reducing what I use. But your MRIs and tests now might show a completely different set of circumstances. I'm happy having full control and not even any Auras any longer, so have accepted that this little Pill Log and 7-day pill case will be what I use until I have reason to change anything.
Still, you've seen others from time to time post that they were going to remove their medications or at least try to (slowly), based on new findings or Doctor's newer recommendations. I expect you'll be keeping us posted on how these go, and if they plan to do anything major based on the results. You might even get the results at this rate in time for New Year's Resolutions.... After I read through the Scientific American Issue (above), I almost wished I had asked for a copy of my MRI for framing or ?? But then I don't know what use that would be anyway, since it was mostly of use to my Neurologist to do what they do. Best wishes for 2006 ( :-o ) Gordon.
purple-cow - 16 Dec 2005 06:44 GMT I'm new to this epilepsy community forum, but not new to epilepsy, nor to knowing many things about it due to having epilepsy myself.
Gordon, I saw something that is a really good idea, so I'm going to share it with other people too, and that was about a little pill log. Also didn't know that the Tegretol XR and Carbatrol were "...are the only? ones used now". I noticed that you mentioned Toronto in your reply here, so are you located in Canada? and if so, are you refering to the plain Tegretol as being not used in Canada?
Julie, that is great for the new CEC opening up in Idaho and wish you the best results for your situation. I just found out that a new CEC is in the plans to open in the future in my area(Austin, Texas, USA) as well.
This right here is my very first official posted reply on this community forum. Since I'm new here, some people here may already know me and or have seen some of my postings and replies on other community forums.
Hope I can be helpful and look forward to learning more new ideas, just like I've done right here.
Bruce (aka...grez-monkey; batman; link-guy)
G.Ross - 16 Dec 2005 14:42 GMT > I'm new to this epilepsy community forum, but not new to epilepsy, nor to > knowing many things about it due to having epilepsy myself. [quoted text clipped - 5 lines] > you located in Canada? and if so, are you refering to the plain Tegretol > as being not used in Canada? It was either my Neuro (Canada,yes- years ago) or another Doctor here? (on this group, posting about 2001 or so), who suggested that most people were prescribed a Time Released version of Tegretol to smooth out blood level highs and lows of the older version ? (Another thread I mentioned that some people I met (here/Toronto) were also using Tegretol (don't know if time released) for Post-Heart Attack or Post-Seizure treatment to prevent recurrence or complications of those. It helps to open blood vessels if there are blockages? and lowers risk of blood clots? <---- *That's My understanding from assorted places, and not a Medical Opinion without doing further research. ) Carbatrol I think is one of the Generics of Carbamazepine? and related to Tegretol family of chemicals.
> Julie, that is great for the new CEC opening up in Idaho and wish you the > best results for your situation. I just found out that a new CEC is in the [quoted text clipped - 7 lines] > like I've done right here. > Bruce (aka...grez-monkey; batman; link-guy) Welcome too, the more voices and experiences we have to share, the better the whole community can be, and especially provide help and support for people newly diagnosed who are still in the 'this is the end of the world...' phase of their diagnosis. Gordon. (I usually just sign posts as G./ as it's quicker and on olde Win.95 I thought it kept the trolls away, before someone automated the trolls. Now there's software to discard them... )
Julie - 16 Dec 2005 17:08 GMT > I'm new to this epilepsy community forum, but not new to epilepsy, nor to > knowing many things about it due to having epilepsy myself. Welcome to the group, Bruce.
> Julie, that is great for the new CEC opening up in Idaho and wish you the > best results for your situation. I just found out that a new CEC is in the > plans to open in the future in my area(Austin, Texas, USA) as well. I started out the day, or I should say the night, trying to follow doctor's directions to get less sleep. Which meant go to bed two hours later and wake up two hours earlier - thus we have sleep deprived EEG. Well, usually I can stay up really late. I decided to ask my hubby to sleep in the guest room so I could stay in bed watching TV until about 1am. I don't think I made it that late. I had a really hard time staying awake. Guess I should have got up and walked around or done something that didn't involve laying in bed. I did manage to wake up early. I set my alarm clock and my husband kept talking to me as he was getting ready for work. Then he called me after he arrived at work, to make sure I was still awake.
He started a nice warm fire in the wood stove and I got up and did some house cleaning and then worked on balancing my check book. HA! it didn't balance. I decided to wait to figure that out until my mind is not so tired. I feel soooo tired. I think I made a mistake because I was getting too hot in the family room so I went back to bed to balance the check book and watch TV. I didn't fall asleep, but I kept feeling like I was about to. So I guess I'm ready for the sleep deprived test. I need to leave in a couple hours for the hospital. Guess I better get cleaned up.
One other instruction is that I am not to put products in my hair, just come with clean, dry hair. It has been about 16 years since my last tests.
My husband said he had a bad night a couple nights ago, after we saw the doctor. I asked why and he said he thinks he must be worried about me and the tests. I told him I am not worried.
The hospital called yesterday to talk to me about the MRI and safety. They asked if I have anything in my body that I wasn't born with. I told them just in my teeth.
I have had a MRI before, but they said the tube is shorter than it was back then.
I have retyped and corrected so many mistakes while I type this. So you will probably find something that I didn't catch. Now I kind of know why people shouldn't drive while drunk or when they do not have enough sleep. It's not just because they might fall asleep at the wheel. If I can't type properly, I would think that driving would be a problem as well, especially when one would have to make a quick decision.
I'll let you all know how things turn out. I wonder if I'll fall asleep. Will the BANG BANG BANG of the MRI keep me awake, or will I have a whole new song worked out from the rythym of the drum.
Take care, Julie
purple-cow - 16 Dec 2005 20:04 GMT Thank you for the welcome Julie. Don’t worry about the editing thing. Most of the time I use my MS Word software program, with the spell checker on and it also helps me with grammar. Matter of fact, I used it now to type up this reply. I’ve gone through 3 separate VEEGs myself. The 3rd and last one was a pre-surgical EEG. This is used to see whether or not if a full surgical procedure can be preformed. The electrodes are on what’s called a grip tape and are place *directly* onto the brain. My results were that it was way too risky for I may permanently lose my speaking abilities. Oh, and there was no need to worry about my hair. It was cut as short as possible and the area on my scalp where the neurosurgeon went in, my hair was shaved off. About your upcoming VEEG, don’t wear a pull over shirt. Instead, wear something that buttons all the way from top to bottom. Also, some sweat pants and maybe some warm house shoes. I’m sure you know that the hospital rooms are cold. Since you will be on a video EEG, the nurses will keep checking in on you and will wake you up if it appears that you’re falling asleep. Sleep depravation, hyperventilating, strobe light and going to sleep after being awake for an excess amount of time, are all used for the same reason, which is trying to force the person to have a seizure. Hope that you have one. For the MRI. Yes, there will be some banging sounds, but I think that the medical staff can supply you with some ear plugs or headphones to listen to music. It’s just a matter of having the music in rhythm with the MRI banging. Bruce
Julie - 16 Dec 2005 23:55 GMT Well, I made it home. The eeg was not bad at all. While I was there I realized that I should have brought my digital camera. I was going to have my hubby run home and get it and the technician suggested getting a camera at the gift shop. He went downstair and got the last throw-away camera in stock ;-) I told them that I was thinking it would be helpful to have this on the Epilepsy Foundation of Idaho website. The technician was really helpful when she heard that. So we have lots of shots. Of course I haven't seen them yet, so not quite sure how they turned out. We also took photos of the MRI room.
The eeg was about what I remembered from 16 years ago. Except I didn't remember that they wrapped your head after they attach all the electrodes. The chair was really comfortable. I had a blanket and tried to go to sleep. The tech said I did go to sleep, but I don't remember that. The worse part was the flashing lights, but I made it through without a tonic clonic seizure.
The MRI was much noisier that the last time (16 years ago). The technician told me it would be. The blanket was nice and warm. There is a mirror at the top so you can see out past your shoes, but I didn't have my glasses on, so that didn't do me any good. I tried singing music in my head to the beats, but this time the beats seemed so loud (even though I had earplugs) and it was really fast (like a rapid fire gun). I asked them if we could have music, but they said no, so I guess we aren't that advanced here in Idaho.
Going to rest now. Take care, Julie
> Thank you for the welcome Julie. Dont worry about the editing thing. Most > of the time I use my MS Word software program, with the spell checker on [quoted text clipped - 22 lines] > banging. > Bruce guitarmom - 17 Dec 2005 20:26 GMT > Well, I made it home. The eeg was not bad at all. While I was there I > realized that I should have brought my digital camera. I was going to have my [quoted text clipped - 49 lines] > > banging. > > Bruce guitarmom - 18 Dec 2005 03:35 GMT Sorry about that, I am not sure why my post was just a quote. I had a whole thing typed out.
Julie, I am so glad your MRI and EEG went so well. The last few EEGs my son has had his head has been wrapped. Something about less interferance with the wire and electrodes or something, I think.
I really appreciated your descriptions of the MRI. He is due for another one at some point next year, I hope. It has been awhile since his last and a lot has happened.
I hope the new neuro will give you answers and better control!
Hang in there! G
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