Epilepsy Community

From what it sounds like you will need to move forward with the MRI. Did you ever have an EEG test done? The test may or may not show if you have abnormal spikes in your brain waves, but that would be the next step for sure along with the MRI.

Make sure that you are seeing a neurology specialist to review your records and tests. Scar tissue on the brain is a common factor with patients that can trigger seizures. There are so many different types of seizures that is why the tests are necessary.

Keep moving forward and good luck!
Dana

No, I've never had an EEG test done..maybe my dr will order that once she gets the results from the MRI and MRA. I am not able to see a specialist of any kind at this time..I do not have insurance which is making all of this more frustrating! My dr has me on a sliding scale so I'm able to see her right now and the hosp that she's associated with has a program that helps pay for any tests done so I'm thankful for that. So, I could be having seizures do to the scar tissue they found? Wow, learned something new. Thank you so much for your response.

Hi lindakae,

Dana sent me a text about you.

When I was an infant, I had meningitis which left scar tissue on my rt temp lobe. Shortly before I turned 14, I had my 1st seizure. This was 3/75.

My initial EEGs showed no abnormal activity. The seizures had been witnessed by my pediatricians, family, friend, and others. Because the eegs showed no abnormalities the drs wanted to diagnose them to be psychomatic(fake seizures).

Later tests did show the abnormal spikes that Dana mentioned earlier. My seizures were always difficult for the EEGs to pick up. This is not unusual.

When I would have an aura, I would experience butterflies in the stomach. As time passed, a change in vision along with a funny taste that started in the back of my throat were my auras before seizure activiy began.

One of the tests that did show the seizures and their location was the 24-hr sleep deprivation. This is an eeg where the patient is not allowed to sleep the 24 hrs before the test is conducted. My meds were also reduced. The absence of meds and the sleep deprivation was to help induce seizure acitity. This was done at Stanford Univ Medical Center. I think it was done in the early 80s.

Fast fw all this to 2001. I was tested for brain surgery when I was living in Mpls. The tests showed that I was a good candidate for it. I had the lobectomy in '02 to have the scar tissue removed. 95% of my seizure activity has disappeared.

In addition to your scar tissue, did you experience any fevers or possible infections? Also, are you eligible for state ins? If so, this might be the way to have your tests paid for. If there is an EFA branch in your area, call them to see what assistance they might be able to give you in regards to finding medical support.

Keep Dana and me, and the others updated whenever you can.

angie

Lindakae, I am very happy that Angie posted her response, I knew that she would give you a very good explaination. Without insurance it can be very difficult, but I am surprised that your doctor did not request an EEG yet especially if she mentioned siezures. The EEG test is much less expensive than an MRI.

Bring this up with your doctor because she needs to be educated about procedures to find out if you the patient is having some sort of seizure or not.

I hope we get more responses to this message to give you more information to bring to your doctor.

Do you have family, friends, roomate or anyone who has visually seen you go into the possible seizure? If you have had anyone see one, please have them document it for you to give you the description of what you are doing during the time of confusion.

We are with you all the way, so please keep us posted!
Dana

Thank you Angie for the info. To answer your questions..I don't remember much as a child or teen due to being molested at 9 yrs old by stepfather so I really can't say if if infections back then. But, 3 months before the onset of my first "episode" of this, I had a very bad strep infection which I ended up going to er for and they gave me penicillin shot plus double dose of penicillin before I they let me go and I have a very high fever also. I don't qualify for state assistance here...they say I'm able to work. I've never heard of EFA, what is that? I will try to keep you posted when possible.

Thank you Dana. No one has ever really actually witnessed any of these "episodes" although I have said look at my eyes..what are they doing and they say nothing. It happens too fast really for anyone to notice anything except for me to say oh, I'm having a dizzy spell again. I don't know how else to explain it to them and I feel really confused afterwards like it's hard to focus mentally. When I told my dr the other day I have been having dizzy spells, she started doing the lay down, raise up quick test and she thought for sure I'd be spinning but I wasn't so that's when I said...let me explain to you exactly what I'm feeling and that's when she said it sounded like I was having seizures or MS. She knows I don't have insurance so I don't know what she's thinking or planning to do with me. But, I will let you all know if I find out anything after my tests and I'll also mention to her about an EEG.

Hi Linda,

Please use our Tips & read about Journals. Use Resources: Questions for DR, should be there. If you can't find it let me know. I have it bookmarked, too. Resources has 2 links/sites that may assist you in getting treatment, also.

Suggestion: start monitoring your blood pressure. Low blood pressure can have these symptoms, also. Ebay has a Blood monitor Cuff. Battery operated. Easy to use. It fits on your wrist. Your Drugstore may have something, too. Ask your Pharmacist.

Love Candi

Thank you Candi, I'll check the tips out. Also, I've never had a problem with my bp...it has always been perfect every time they check it. I hope I can get some help with getting assistance somehow.

Hello Linda,

Thank you for your response. I'm glad to hear your BP is 'normal' when DRS chek it. But, so is mine. Most times. It's B4, During or Rite after these 'episodes' that You need to chek it.

The sites in Resources should be useful. But, the Epilepsy Foundation, also, has a program that may be able to provide you w/ some Help. Link for EFA.org is in Resources.

Love Candi

Hi lindakae,

Bless you for sharing the incident regarding your stepfather. That was very brave of you.

The EFA is the Epilepsy Foundation of America. Check the resources and look for the info regarding websites and phone #'s. There might be a branch near you. When I lived in Mpls, the St Paul branch was very helpful to me in regards to housing, med info, support, etc.

While I lived in Mpls and was working 20-60 hr weeks, I still qualified for state asst. If I hear of anyone who might be able to guide you towards asst, I will be sure to let you know.

Have you searched the webmd site for different types of epilepsy, tests, meds, etc?

Check in when you can and keep asking questions. There are no stupid questions!!!

angie

Thank you Candi and thanks Angie(my family thinks I need to see a therapist and talk about that but, I just don't want to bring it up and cause myself anymore probs right now)..I will definately check to see if there is an EFA around or near here, KY. I've done a little checking into seizures and MS, but not much but I really need to check it out more. Actually, I forgot, my bp was a little lower on the top than normal the other day when I went to dr. It was 104 and is usually right around 120. My "episodes" have finally passed for now..they lasted about 4 weeks this time. Whenever they started back in '05, I noticed that either my arm or leg would jerk at different times for no reason. Now, they will occasionally do it and I also have what I call the "bobble-head" sometimes. Does anyone else do this? I was also put on Neurontin in Jan '06 when dx with fibromyalgia and I asked my dr the other day..if it is seizures, wouldn't the neurontin help that? But she said it just depends on what type I might have. This is just so frustrating at times.

Hello Linda,

Your DR is Rite. Different AEDS (Anti-Epilepsy Drugs) work for different Types of seizures. Did any of our Resource sites about Types of Seizures Help? Chek 2betrhealth site. I think she has the most comprehensive list on Types of seizures. Chek out Triggers Tab, too.

Linda, you sound down about a therapist. But, it Could actually Help! I know of others' who talked to the Pro Counselors & it truly did Help them. So, please, reconsider.

OK, then keep track of your BP. Note in your Journal any & all 'odd' behavior. Do you know much about Neurontin? Use the med tab at top & Learn More!

I have 'leg jerks' that started (or just really noticed0 this past yr. So, you ain't alone there. And a friend of mine does the 'bobble-head'. Reflex Epilepsy? More Info about that on the Epilepsy Foundation Site.

Love Candi

I took Neurontin for about 6 years for my szs and it did help it. But I was also on Lamictal and oen other on that I can not recall right now,

I was pulled off it and went through withdrawl from it even thouugh it took several weeks to get me off it so he could put me on the Vimpat.

but it was a great drug for nuerthpy because my grand pa who was a brittkle diabetic and ahd CHF and a whole host of other little things going on, but he said it helped him and his neurpathy was REALLY bad. SO mabye it will help you. Who knows we areall different.

JUst my expiernce with it and my now deceased grand pa's.

I have Complex Partial szs.

IH ave been on the med merrhygoround so many times is isnt even funny anymore.

I am tking 400 mgs of Vimpat, 600 mgs of Lamictal, and 3 mgs of Klonopin.

I also have a VNS implant as well.

take care I hope you all the best with this stuff;

Hawii Girl

Hi lindakae,

I have been had a couple of therapists over the years. I was hesitant at first but I began to look forward my appts. My first therapist(I was living in the bay area) helped relax and showed me how to do some breathing excersises that often "smothered" an upcoming seizure. He later became a friend to the family.

I also had a couple of wonderful therapists when I lived in Mpls. They too were great. I still keep in touch with my last one through phone messages and letters.

Unfortunately, society gives people who go into therapy a bad rap. We all need an outsider to chat with from time to time. Someone we can talk with w/o the fear of refection or being misunderstood. Someone who will listen to us. Someone who will speak honestly and not say what we want them to.

Talking with someone other than the family might be beneficial to you. I'm not saying that talking with a therapist is going to make your "episodes" disappear but it might be the way to help deal with them.

I never did any of the movements that you have mentioned, My mom tells me that I usually tapped my feet, rubbed my hands, smacked my lips or pulled at my clothes when I was having a seizure.

Remember, everyone's warning signs or actual seizure activity is different. Commonalities we do have but we react individually.

angie