Has anyone else experienced or have more knowledge about this form of epilepsy? I was diagnosed by a neurologist after having several tests and brain scans done when I was a adolescent, they had found scarring in my brain, prescribed tegretol amongst other meds, have gotten several mental health misdiagnoses later on in life and finding it very frustrating not having anyone to talk to about this who understands or has knowledge about what this is like. I've had two grand ma seizures, once when I was a baby after having a fever over 104. And another in grade school that was pretty traumatic. I know there are people who have it way worse and I'm thankful my condition isn't as severe, but it would still be nice to talk with someone that knows more about these things. I haven't taken medication in years because I was 'seizure free', haven't had anymore grand ma seizures but am now being faced with what I feel is wrong diagnosises while trying to live with what the neurologist has said are these focal motor seizures. Any support or feedback would be greatly appreciated.
Focal motor seizure disorder: Has anyone... - Epilepsy Action
Focal motor seizure disorder
Hi ,
I have suffered with severe epilepsy for years since I was about 4 years old. Over this period of time I have had my medication changed numerous times . There was a time when I was prescribed Tegretol 200mg morning and night but it had to be increased to 400mg morning and night for a while. Unfortunately after a while I was later prescribed Epilim chrono 500mg along with the Tegretol for a while and had it all changed again. The Medication can work but it Is never the same for different people because of circumstances etc . I suffer with all the different forms of seizures from absences to grand mals and the problem is you never know when they will happen even if your consistent with medication. I even had a brain scan to find if they could operate on it to help reduce the amount I take but unfortunately they can’t even locate where the damage is that’s causing them. I have a review in June to maybe have the meds changed again . For me it feels like nothing can be done because the dosages are just increasing all the time . I’m sorry what I’ve said isn’t really much help but I hope you manage to get yours under control again . If you would like to know anything about the seizures or different medication I will try and help you from my experience if you like or would just like to chat about it in general that would be fine.
Let me know and I’ll reply ,
Take care ,
Rraditau.
Thank you for your input and support. I'm sorry for your struggles and what yr going through... I'm also here to help support you. ((hugs))
Thank you for your quick reply and support. Please keep me up to date from your side . Are there any other types of seizures you have had apart from the Grand Mals ? Have you been put back on any type of medication? Did the doctors there explain what could probably set your seizures off at all ? . Most people think it’s due to strobe lights etc which seems to be the most common but that doesn’t effect mine .
( hugs )
I find myself very sensitive to different kinds of lights and sounds, crowds, having the feeling of being 'over- stimulated' as far as sensory processing goes. I find myself in like a 'blank stare' still aware of my surroundings but kinda like 'zoning out' constantly, through out my entire day, every day. I can hear and feel things around me but unable to speak at the time or really make any kind of movements when this is happening. It makes concentrating or responding 'properly or promptly' very difficult at times. Many times I feel people think I am being rude or not understanding what they are saying... Which is not the case at all. Makes things very frustrating. Other than the two full blown grand mah seizures that I had experienced as a child, I haven't had any more of those to my knowledge again since grade school. I do have scarring in my frontal/temperol lobe which would indicate a head injury of some sort which has yet to be explained or accounted for. I've done research on my own and discovered that scarring in these particular regions of the brain can cause certain cognitive functions to be inpaired. This kinda helps me to understand a bit more why certain things are so difficult. I've looked into CBT (cognitive behavioral therapy) something also used to help people suffering from certain mental illnesses and could see why that would be beneficial for someone like me who's cognitive function has been impaired due to scarring of this region of the brain. I am willing to try working on this again with someone, if I can find a decent provider who will hear me out without pushing unnecessary treatment options that have caused more harm than any good. I've taken action to find things out on my own because I've had several really traumatic hospital and Dr office visits, including testing and surgery's that have left me very untrusting of people in the health care field. Several mental health misdiagnosises when suffering from something totally unrelated and have been affected by the stigma that surrounds these issues as well. I feel unheard, I feels at times certain rights of mine have been violated. Still to this day. So, Im kinda struggling with trying to get the help I need because of these things. I now have been diagnosed with anxiety disorders and what I feel is hospital and health care induced PTSD, which absolutely did not hafta be the way it has been, but it is what it is. Not sure which direction to turn but am considering getting legal help and someone to help advocate for me. So, help in that department is probably my next step. I cannot continue to function this way and shouldn't hafta feel unable to receive proper health care. Nobody should ever hafta feel that way! Ever! It's just not okay. This is happening way to much, & not just with me. Something needs to be done, and things need to be addressed. I feel very strongly about these things because it's had a very negative impact on my life! Still to this day. Certain people don't like when attention is brought to things that are wrong, and I've had to deal with the 'consequences' of that as well while trying to advocate for myself and rights as a human being. It's scary but if it brings change to the way things are. Then it's worth it. People shouldn't hafta suffer like this because of injustices and cover ups and wrong doings at the hands of people in-trusted with a human life. I also acknowledge we are all human and even the 'highest respected people' make mistakes, I am a very forgiving person, but realise I also have rights as a human being that have been violated and do not hafta accept this, as forgiving of a person as I may be... I am now shedding some light on this because suffering in silence isnt going to change a darn thing! Thank you for caring. It helps to get different inputs and advice from others. I appreciate your time and support. ((hugs))
I definitely agree with what you said about having to suffer in silence which isn’t fair and the descriptions of the others you have are like mine as well. I see you also mentioned about PTSD , my best friend of 20 years was diagnosed with it a couple of years ago and he got me through so many problems with my epilepsy. There was a time when we worked and the warehouse was evacuated because I was taking a seizure, he ignored everyone else and went back in to help me so we both lost our jobs but he didn’t care . He gets upset about his illness at times but I always talk to him about his for support so he feels better that way . I also hate all the mistakes made here but like you I am forgiving. The trouble with our illnesses are that no two solutions can ever be the same so it’s more like testing with so many different trial meds then just constant reviews to see what will work and still getting nowhere.
Your more than welcome, just text anytime and I’ll reply.
(Hugs)
Yr absolutely right. Everything U've said has been so helpful. Thank you & I sincerely appreciate you and yr support. Here for you too. 💜((Hugs))
You don't have to suffer in silence!!! and you are never alone!!💕 Thank heaven for this forum....I knew nothing about my 'new' disease.💕
I am really greatful for your support as well. Like I say , keep well and please chat any time ( hugs )
Hello, I'm in the states as well, Indiana. I was headed to bed but had to answer your post because I hope it will really make you feel better. I am 81 years old.
I received the same diagnosis you did at age 15 from Children's Hospital in Boston. Here is my seizure history....like yours. Before I got that diagnosis I had tons of petit mal only nobody knew what is was...this is in the forties and fifties. At age 15 I had two grand mal seizures, one no one witnessed and fortunately the second in front of my parents. They called the family doc who sent me to Boston. The never found a cause and it was called idiopathic epilepsy. After a few hospitalizations...the tests were quite different in 1955-56, missing my graduation with my classmates and going through the trial and error period with the meds, even though I continued with petit mal, I graduated.
The next seizure I had, I was 31 and under a lot of stress...going through a divorce and had two sons. That was it until I was in an auto accident , 1975, age 35, in which I suffered a closed head injury and had a seizure, grand mal, in the hospital. Oh, I cried because I was raising my sons, working two jobs, had a home and was so afraid of losing that defiant independent streak I had. I didn't.
After that my meds were increased and after several years seizure free I went to a young neurologist in hopes of reducing my meds. I did not have another seizure but his reduction plan was to take me off my existing meds and substitute it with Tegretol (1985). Every time I had a negative reaction, he increased the dosage. All the time I was being overdosed on it. A pharmacist knew me and knew I hadn't had a seizure for years and went out on a limb and warned me about the excessive dose, 24 tablets per day. When I returned for my refill next month he told me I should 'go to Mayo Clinic before I developed a pernicious anemia'. I did go to Mayo in 1985, they were appalled and I had a drug induced lupus. I did sue that Dr. Mayo put me on a reduction taper over the next six months and I was down to 3 Depakote and on clonazepam, which I had been on since age 15.
My real message to you is that those 'odd sensations' to you are signals that there is something going on in your brain...some folks have diabetes and some have epileplsy. It IS a trial and error and changes with our meds due to hormones, any other illnesses or meds...so many things but personally, my advice would be acknowledge you have a lot of electrical activity which needs to be medicated. You haven't had another grand mal, right? I know you don't want to any more than I. My last grand mal was 1975 at age 35 but my meds have been adjusted many times since. For several years I was on a maintenance dose of 200mg of primidone and my old clonazepam with no problems. Your anxiety is not baseless, it is intelligent. You have reason.
In August of 2019, I woke up and was blind in one eye...Giant Cell Arteritis, and autoimmune disorder, nothing to do with anything else in my brain just some little added challenge. BUT, after 2 months on Prednisone, high dosage, I began to have the staring...lost sinking feeling and I knew I was experiencing auras. I was living alone in Maine at the time, my husband and I just agreed to separating for a while, no hard feelings. I KNEW if I had a seizure my 53 year old son and his wife, who live in Canada, would want me somewhere where I would be safe.
They had applied for me to go to Canada but it is a lottery system. I'm getting off track, I called my rheumatologist at the time and said bluntly...I CANNOT have a seizure or I'll be in a home, and I wasn't ready for that regardless. First they tried 1000 mg of Keppra and then added another 1000mg and I've felt great. I kept my old maintenance dose too.
I'll take whatever I have to in order to calm my wildfire brain. So, I've been 47 years seizure free but with med adjustments. Once they get it right along with the help of my body....it is fine for many years. With having the little odd sensations you are, receiving the same diagnosis I did at the same period in our lives, puberty! Are you approaching menopause or had a hysterectomy?
My stone cold advice....it would be well worth it to go to a teaching hospital or Mayo Clinic in Rochester, MN. Here in Indiana I found that some of the rural specialist just didn't have a handle on it. Just 3 weeks ago I had an EEG that showed abnormal electrical activity in my brain....but I keep in close touch with my neurologist. My system is being overworked with Prednisone and right now tapering off that has to be a priority....but you can bet I'll be keeping an eye on my brain too.
I hope you will go to a good facility and get on a maintenance dose of meds....how do you think you will feel if you did manifest a seizure? Not great I know. I can tell from your tone you a fiesty and that also represents great inner strength...and that is what it really takes.
Please let me know how you do.....Once you get the diagnosis, and we did, it is up to us to insist on the care.....My heart to you💕💕 I just couldn't go to bed without responding.
It is a booooooook.
Thank you so very much for taking the time out to write to me. You have no idea how much it means to me :') just to have someone who understands. Thank you 🙏
Totally understand! and you are going to be not just fine, but great.🙏🏻💕
((hugs)) thank you 💜🥰
Please let me know if they put you on a low maintenance dose....when will you see a neurologist? To me, popping those pills is my little security blanket...and I'll take them.((💕))
I will definitely keep in touch.. Must find where to go first.
Is there a teaching hospital in a city near you? Do you live near a large city? A good neurologist...Sorry neuros out there, but I've had some 'not so great' experiences with neuros in rural areas, and good ones.... but a teaching hospital can direct you to a quality person who won't let his ego get in his way. I'm certainly no doctor, but have had such a similar experience and the 'strange staring etc' sound like 'warnings' .......I remember when I was divorced a hundred years ago and was raising two boys, I was getting checked often because I was so afraid of having a seizure and losing that tough independent me..with my sons. 💕
Yeah, the choices in my area as far as health care and facilities go.. are not that great. Things can change with time and different people in position... But, I am probably going to hafta travel to get decent health care or to see a specialist. Also kinda limited due to the type of insurance I have. To be honest, I really feel like I was giving up on the whole health care system for awhile there bcuz of some of the messed up stuff that's happened.. but I'm not giving up just yet. Getting older and having some health changes/concerns and would really like to be able to receive proper care. I'm realizing even more now how hard you gotta fight for that care... It's been a battle since I was a kid... An exhausting one. But I'm trying to keep an open mind and work up enough courage to try again. Upcoming goals. Thank you for being supportive 🥰💜
I recently changed my primary care physician, and sometimes we make those changes for our own good, we must. I'm hoping you can get to someone you trust.💕
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