View Full Version : Not given any real answers
11-07-2006, 03:42 PM
[Garney] 3:21 pm: Hello, new to all this. I am 47 and had my first seizure on Oct 2. Since then have had 4 more.
Have had all sorts of tests done. Dr. says all ok. Going for second opinion to Mass General. Picked up all
bloodwork and MRI done. Not all bloodwork was normal and MRI states three/four small white areas but they were
not sure of any signifigence. When having seizures, I feel different right before they happen. Told I have glazed
appearance, right hand curls up, can not communicate, right sided weak
[Garney] 3:25 pm: the weakness lasts anywhere from 4-24 hrs. When can speak again will say same word over
and over. I have been on Depakote, then Keppra, now Dilantin. At times can not remember words or will mix up
what I want to say. Any one else going through same, or have any thoughts?::confused:
11-07-2006, 07:17 PM
Welcome to the forum. I'm no Dr. but it sounds like you may be having simple partial seizures where you feel funning that lead into a complex partial seizure or a petit mal (absence) seizure. This happens to me a lot.
I start to get a funny feeling in my stomach like butterflys, then I look around the room but I'm not sure where I'm at during this time I'm totally conscious then all of the sudden I will blank out and if I'm talking to someone I will no longer speak that's when I am having a complex partial seizure.
My neurosurgeon and Epileptologist(Dr. specializing in epilepsy) did many tests on me and they found a scar on the right temporal lobe of my brain. I had surgery done to help reduce my seizures where they used ultrasound and it destroyed 75% of the scar tissue but the rest of it they couldn't get because it was to deep in the brain and I could have lost my sight.
My advice to you is to get a calendar and write down what time you have a seizure along with a discription of the seizure. By doing this your Dr. may be able to see a pattern as to what time of the day or what days of the month you are more likely to have any seizures.
Stay away from anything with nutra sweet (aspartame) ex. diet soda because it's been proven that nutra sweet causes more electrical activity in the brain which can trigger seizures for some people. Also try taking vitamin B12 once a day it has done wonders for me cutting back on the seizures.
Here's a couple of web pages if your interested
When the main page comes up click on epilepsy or do a search.
Here's wishing you well and May God Bless You!
11-08-2006, 08:41 AM
Thank you for responding to my message. I have read some of the material on the sights you suggested. Can't read a lot at once because the screen bothers me now. And too much reading also bothers me now. Hoping to find some sort of answers at Mass. General.
I did start writing things down that I could remember, and also what my husband has told me.
Thank you again,
11-08-2006, 08:47 AM
[Garney]MRI states three/four small white areas but they were
not sure of any signifigence.
Have your MRI looked at by a neurosurgeon. Neurologists are not trained in abnormalities of brain structure or development of growths or other lesions, and they can't determine if surgery is necessary nor perform the surgery. Only a nsg can tell you any of this.
11-08-2006, 01:44 PM
Thank you for the information. I am waiting for an appointment from Mass General. I have sent them all my test results up to date. They will look at them and decide who I should see. I will ask if the doctor is nsg. I am also waiting for my dilantin level. Monday, when saw Dr. he said I looked out of it and could be toxic? Called this morning haven't heard back yet.
11-14-2006, 07:39 PM
If the computer screen bothers you along with reading for a long period of time you may be photosensitive, that's when certain colors or bright lights can trigger a seizure.
When you see your neuro again you might want to request to have a specialized e.e.g. done where they will flash different color strobe lights one at a time to see if certain colors trigger seizures. When I had this done I found out that amber, florescent green, and bright white were the 3 main colors that triggered seizures for me. Here's wishing you well and May God Bless You!
11-15-2006, 12:52 AM
Really, Sue? I thought they always used white strobe lights. They do on me at least.
Make sure to keep us updated Garney! *Hugs* I hope things get better for you soon.
11-16-2006, 04:18 PM
Porkette and Ellie,
Thanks for the responce. I will tell the Dr. on Mon about the screen bothering me, along with the florescent lights at school. I was not feeling well a couple days then broke out with red spots (4 so far) Have been told that I have shingles, and put on meds for it. Told would get worse before it gets better.:eek:
Well, hope you both are having a good week!
11-16-2006, 06:16 PM
Garney, how long have you been on your current AED (seizure med)?
Make sure if you are new to the med you tell whoever prescribed them about your rash - as a rash that looks similar to shingles, hives, etc. can be a serious side effect.
11-17-2006, 10:49 AM
Garney I hope things are better today. When is your appointment?
11-18-2006, 05:20 PM
My appointment is on Mon. with Dr. Costello?? I have all tests to date to bring with me. Will let you know how it goes.
Have a good night:)
11-18-2006, 05:26 PM
I have been on Dilantin for about 3 weeks. I had my dose lowered last week, because my blood test indicated that it was toxic in my system. Have asked my Dr. if the rash could be from med, she said no it was shingles. I will still bring this up on Mon. with new Dr.
11-21-2006, 04:16 PM
Had my app. yeterday with Dr. Costello. He talked with me and husband 2 hrs. No knew answers. Looked at all my tests up to date, all look ok. Asked if EEG was done during an episode, no. Wants another MRI in 6 weeks to see if change. Wants me to get to E.R. when have another episode ASAP to try an capture on EEG. If not will take me off dilantin, hook up to long term EEG and hope for seizure. Wants a definate diagnosis. Are these epilepsy, or something else? Said it is catch 22. Is dilantin stopping seizures, or is it not even seizures?
Said I had definate right sided weekness, obvious right handed tremor. My husband informed Dr. that he has noticed an obvious loss of memory over last yr. This is very frustrating. I was hoping for an answer to all going on, but I guess not that easy. Oh well:o
12-07-2006, 04:49 PM
Today i was put on both Dilantin and Keppra. Have had break-through seizures on both, so dr. decided to combine. Will not go to work tomorrow, because don't know how it will effect me. Having Dilantin level checked in am. Have a kind of feeling before seizures coming. Right sided weakness after, along with tiredness. Next day will have hard time with word retrieval and mixing up words when speaking. Also have trouble when typing, mix up order of letters. The word is correct, but letters not in order. Getting very frustrated. Why would seizures start in mid forties??? Oh well, hope to hear from people. Have a good night;)
12-07-2006, 06:43 PM
One reason why you might be having sz. in your forties is because you are beginning to go through your change which can in turn effect the hormones and lead to sz. Some women have fewer sz. after their change but others increase in sz. I've noticed that I've had an increase in my sz. since going through my change.
With everything that you have mentioned about your sz. they sound like mine when I have an aura sz. that leads into a complex partial sz. where I see many different colors, stop talking, and then blank out. When I get the warning I'm going to have an aura sz. I tighten up the muscles in my body and make my hands into tight fists for a few seconds by doing this it stops the sz. Here's wishing you well and May God Bless You!
12-07-2006, 06:49 PM
Garney - My seizures started in 1990 when I was 46 :(
A CT showed something appearing to be a mass in my left temporal lobe but the follow-up MRI was misread as "perfectly clear" so I was diagnosed with idiopathic epilepsy.
An MRI in July 2005 showed a brain tumor and we managed to retreive the old MRI and the tumor was perfectly clear on the old one too.:eek:
VEEG, PET, many more MRIs and that sort of thing showed that my seizures were caused by the tumor and it (with a bit of my hippocampus) was removed Feb. 14, 2006.
I did not have another seizure - not a single one - until last Friday.
The reason I wrote this long thing is because I think it's SO VERY important that you have those "white spots" on your MRI expained and then explained by a second opinion .... then a third opinion. But no one have ever accused me of being smart ~sigh~
12-07-2006, 06:52 PM
Thanks for the update and I really hope this 'mix' works for you. Although it is tough at the start, once you get more familiar with your seizures you can work on focus type of techniques. I've heard of it working for some, not for others - but as Porkette mentioned, it works for me about 7/10 times (I know it's not a perfect score, but even once is good).
I don't know why I do it, but I have a tendency to eat a lot when I feel an aura coming. My auras mimic low blood sugar sensations, so I eat.
I can certainly understand your frustration and suggest that you try your best to stay calm and relax. It's much better for you if you avoid any type of stress and even more so when you feel a seizure coming.
I really do hope things start to look up for you as soon as possible. Thanks for keeping us updated and I hope you continue to do so. Sometimes I have quiet bits, but I keep my eye on everyone and like to know they are OK. :)
12-08-2006, 05:33 PM
Thanks for responce. I have been told again my seizure sound like complex partial. Dr. still talking about doing VEEG at Ma General, but says it is very invasive and would like to hold off to see if new med combo works. Trying to keep positive. Go to work every day. Can't keep eyes open after 5:00 pm.
Could be worse.
Have a good weekend,
12-08-2006, 05:38 PM
Thank you for the information. I have really wondered about those spots. Have been told they are just from age! I really have not felt comfortable with that explanation. I am so sorry to hear that you had a seizure after so long. I hope that you can control and not have another. Let me know how it goes.
12-08-2006, 05:47 PM
When i feel funny and know something is going to happen, I have tried telling myself over and over, "this is not going to happen, keep calm." I think it may have worked a few times? I also tend to suddenly be starving. I am putting on weight (my family is thrilled with this), but I don't like it. Trying to stay very positive, things could be so much worse. I think about other people that are really sick with things they can't control. Feeling sorry for ones self is not an option. Happy to hear from you, and take care.
12-22-2006, 08:30 AM
I just wanted to clarify......the right-sided weakness and tremor......do you have them all the time? Or any neurological symptoms that are separate from the seizure spells? Lesions in the brain, those white spots on an MRI, can cause seizures by destabilizing the area, depending on where they are located. I, too, would want to know more about the lesions. You might post over on the Multiple Sclerosis board to ask if they've ever heard of lesions just being due to age.
The reason I say this is that, of all the people I know, I would have expected lesions on my MRIs. I've always been under stress, etc., but my scans were all clear (ages36-39; I was getting them yearly to check for suspected lesions). My sister, however, had six on a recent MRI. She probably has MS (her symptoms include lower body weakness in general, along with others).
Jingle, that is AWFUL about a doctor missing the mass on your MRI. That happened to my sister, too!!!!! Her new neuro looked at an old MRI that my sister brought from a few years ago; my sister had loss of feeling in her hand that the old neuro said was due to carpal tunnel.... The new neuro said there were lesions in her brain even back then, but no one had ever told her!!! She could have started medication years earlier!!! :icon_mad:
Yeah, don't let a doctor blow off lesions (or spots) in the brain, *especially* since you are having neurological symptoms.
(and fwiw, my seizures started at around 36yo, out of the blue. Mine are related to my hormone cycle, too. I take progesterone daily and it seemed to help. Progesterone is a calming hormone for the brain, actually, and I don't think my body makes enough)
Oh, and I take lyrica for the partial breakthroughs, in combination with keppra (which I take for my Tonic Clonic seizures), and that seems to work for me.
Oh, and (:rolleyes: ) I would suggest not eating something heavy in sugar/carbs when you are feeling off. I only suspect, don't know for sure, but I think heavy sugar (maybe causing a dumpage of insulin, or the dumpage of insulin causing a sudden drop in blood sugar) was related to my first two seizures (they were both major holidays......what can I say?!).
12-22-2006, 06:31 PM
The right sided weakness is mainly after a seizure. I have the tremor all the time. I also have trouble with word retrieval and stumbbling over words for at least a day after a seizure. I am finding that I am having more episodes of haziness? Can hear a person or something going on as if in a dream like state, but can not respond when asked a question. I respond in my head, but delayed verbal responce.
I am not sure where the white areas are in the brain. I will go over to the MS board and see if age could be the problem :confused: Have a nice holiday:)
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