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historygirl
@historygirl

Posts: 4
Joined: Jul 12, 2018

What to do when you've tried everything?

Posted by @historygirl, Thu, Jul 12 10:38am

I've had epilepsy since I was 12 years old and I'm now 23 still having seizures. The longest time I've ever been seizure free is 3 years. Right at year 3 I had a grand mal seizure. That is the last time I've ever been seizure free for 3 years. Whenever I do have a seizure it's always been a grand mal and I never get an aura or any sign I'm about to have one. I've had a seizure were I'm having a normal conversation with someone and nothing is out of the ordinary. Since I was 12 I've had two seizures an hour apart or two seizure in one month then the following month. Recently, I had one in April and then another one in June with no physical reason. I eat healthy and I workout for 45 to 60 minutes everyday. The theory is I'm having seizures based on my hormones. I've had 3 CAT scans, 1 MRI, and countless EEG's. All my EEG's show I have abnormal spikes in my brain and if I get a high spike over the threshold line I will have a seizure. The only thing my Neurologist has been doing is writing my prescription for the same medication I've been taking since my seizures started. I'm at the max dose of my medication and yet still had a seizure while on the max dose. I've been to several doctors who aren't Neurologist to see if something else is causing me to have a seizure and no one can tell me anything because they aren't willing to think outside the box. Their theories are if they can't physically see the problem they can't do anything. It's frustrating because I'm 23 and can't drive alone and when I do have a seizure I can't drive at all for 6 months. When I was in college I was driving around campaigns and was at a stop light, but I had a seizure and went right through the red light where I ended up in the bushes in front of a bank, so I was told by bystanders. I have limited freedom because I never know when a seizure will happen, so I'm rarely left alone. I'm lucky however compared to other people who have epilepsy because I'm not having them everyday and not having several seizures throughout the day, so I'm very lucky with the amount of seizures I have. Overall, I'm just frustrated because I want to know what's causing them or how to prevent them, so I don't have the fear of not knowing when they happen or where I'm at. Any suggestions would be much appreciated because I'm starting to run out of ideas.

REPLY

Sorry you’re having a tough time getting answers. Don’t give up! My son had epilepsy. We spent months completely frustrated with doctors who didn’t know what to do, other than try different medications. It was hell!!! We finally found a friend of a friend who’s sons went through a very similar situation and found help at the Mayo Clinic in Rochester MN. So we contacted them. They knew what to do almost immediately. My son is now seizure free. I know your situation is different, but my point is to reach out like you’re doing here for possible solutions. Don’t accept one doctors opinion. I pray that you find the right solution.

@boston2mayo

Sorry you’re having a tough time getting answers. Don’t give up! My son had epilepsy. We spent months completely frustrated with doctors who didn’t know what to do, other than try different medications. It was hell!!! We finally found a friend of a friend who’s sons went through a very similar situation and found help at the Mayo Clinic in Rochester MN. So we contacted them. They knew what to do almost immediately. My son is now seizure free. I know your situation is different, but my point is to reach out like you’re doing here for possible solutions. Don’t accept one doctors opinion. I pray that you find the right solution.

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Thank you so much! I really appreciate it!

You might need a new neurologist. There are many different meds out there. I would stop calling them grand mal because it means the biggest sickness in French. The brain has many different areas in it and each part handles something different. I hope you're documenting what someone tells you happened duration and effects Did any of your tests show where the seizures were coming from? I know what you mean about driving I absolutely hate it that I have to rely on someone to take me somewhere. My over 3000 seizures came from a lesion on the left temporal lobe b/c my mom had a fever when she was pregnant with me. The left temporal lobe's lesion caused me to have complex partial seizures. My short term memory reasoning sequencing and right now I'm having problems with speech-aphasia or mine is anomia words are on the tip of my tongue. I'm going to see a speech pathologist in Aug. VNS is available shocks sent to brain and I ended having a left temporal lobe lobotomy and removal of left hippocampus but that's a last resort. I'm trying to say there are other options

@historygirl

I totally understand your frustration. I’ve had over 13,000 seizures in approximately 46 years. Haven’t had one in about 5 years, it’s been sensational not having them everyday and being in a coma a month or so at a time. There is new seizure terminology, when I got diagnosed they were called Major Motor Seizures then Grand Mal and now Tonic Clonic. Tonic=stiffness and contraction of muscles and Clonic=the jerking activity.
Medication controls 70% of seizures but sometimes it takes years to find the correct cocktail and dose. If in fact you do have Catamenial Epilepsy there is a medication several women I’ve known who have Catamenial Epilepsy who use a drug, it starts with an “N” but that is all I remember of the name but it contains Progesterone and a small amount of estrogen and when it was added to their Anticonvulsants their seizures stopped. That’s not to say it will help you but it’s worth mentioning to your new Neurologist (hopefully)
Also have you ever seen an Epidemiologist? They do all sorts of hormonal testing and all sorts of other chemical testing, they are often helpful.
Another thing, you may want to see an Epilepsy specialist, an Epileptologist.
There is new DNA testing where they can supposedly tell which medication and what dose will work to control your seizures. I haven’t talked to my doctors about how or if it really works but a couple pharmacists claim it does. Again, worth mentioning to doctor.
Wishing you the best of luck.

I can totally relate with you. Your story is 95% same as mine I suffered from epilepsy at the age of 6 and has been taking med since then. It feels great to be able to share my sufferings. I wonder what medicines you take can you name them and how heavy your dose are? Honestly I feel real good and happy to share my disease as I can not share it with another personnel

@9882351045

I can totally relate with you. Your story is 95% same as mine I suffered from epilepsy at the age of 6 and has been taking med since then. It feels great to be able to share my sufferings. I wonder what medicines you take can you name them and how heavy your dose are? Honestly I feel real good and happy to share my disease as I can not share it with another personnel

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I take Lamictal XR 600mg. I take it in the morning only because it's time release unlike before when I had to take it once in the morning and once at night. I'm at the highest dose. I never started with 600mg that is a recent dosage increase. Also, I take a bunch of vitamins that's really all I take. Lamictal XR is the only anti-seizure medication I take I've been taking it since I was diagnosed with epilepsy back in 6th grade.

@12271997

You might need a new neurologist. There are many different meds out there. I would stop calling them grand mal because it means the biggest sickness in French. The brain has many different areas in it and each part handles something different. I hope you're documenting what someone tells you happened duration and effects Did any of your tests show where the seizures were coming from? I know what you mean about driving I absolutely hate it that I have to rely on someone to take me somewhere. My over 3000 seizures came from a lesion on the left temporal lobe b/c my mom had a fever when she was pregnant with me. The left temporal lobe's lesion caused me to have complex partial seizures. My short term memory reasoning sequencing and right now I'm having problems with speech-aphasia or mine is anomia words are on the tip of my tongue. I'm going to see a speech pathologist in Aug. VNS is available shocks sent to brain and I ended having a left temporal lobe lobotomy and removal of left hippocampus but that's a last resort. I'm trying to say there are other options

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I agree I do need another neurologist. I've gone to three neurologists already and I thought the recent one would be good, but he's been my neurologist for 3 years now and hasn't really done something different from the other ones. I've done several EEGs and I've had several CAT scans and recently got an MRI done. On my EEGs it shows my brain waves are abnormal however never have I been told what side they are coming from. Also my CAT scan and MRI show nothing so I'm still having seizures but have no clue what is causing them.

Dear History Girl,
I have frankly been on every single Epilepsy medication, and nothing works worth a damn, and I am so tempted to frankly give up on my book entitled "Misunderstood and Resilient", because those of us whom suffer from years of constantly being treated as a "PSYCHIATRIC PATIENT, or a "NUTCASE", you start to believe it yourself!!!!! I am honestly about to get relief; as I even my current Neurologist I saw today, thinks it's also "PSYCHOLOGICAl", for the twenty millionth time! I have become so numb to being seen as a "PSYCHIATRIC PATIENT", that I just want to leave the United states; as no-one in Israel, will have access to my medical records, therefore i can finally have some relief WITHOUT ANXIETY, DISCRIMINATION, and frankly being "BRANDED" like a "COW"!
Bye for now!
Sincerely,
Shelley

@rachelanne

Were you ever in an Epilepsy Monitoring Unit? (Till That’s the best way to evaluate Psychogenic Seizures) If not you might ask or insist on going.
Have you ever actually been diagnosed with Psychogenic Seizures? If so, how was the diagnosis reached?
Have you been to an Epileptologist? (Epilepsy Specialist) As I stated in an earlier post you might consider seeing an Endocrinologist for hormonal and other chemical testing. Sadly many doctors believe a patient to have dissociative Seizures (Non-Epileptic Seizures) if they can’t find a cause or a treatment. Then you hear the magic words you have “Intractable Epilepsy.” The precursor to Psychogenic seizures. Now the doctors feel justified in diagnosing you with Psychogenic/dissociative/NES (There are so many terms for this) problem is they are often wrong and they could care less how HORRIBLE they’ve made our lives!!! Been there, I know. I told one Psychiatrist “Your crazier than I’m suppose to be” and walked out. My seizures turned out not to be Intractable after all. Gee, imagine that, another mid-diagnosis, surprise!! surprise!! I’ve been waiting 51 years for a cause but I know it will never come. Most people and their doctors with Epilepsy will never know the cause.
Sadly many doctors believe a patient to have dissociative Seizures (Non-Epileptic Seizures) if they can’t find a cause or a treatment. Once Intractable seizures is mentioned Psychogenic seizures will eventually be brought up. No doctor on this planet can accurately diagnose anyone with Intractable Epilepsy since no one can predict whether or not a patient will or won’t have a seizure. I was diagnosed with Intractable Epilepsy at Stanford University Medical Center, one more mis-diagnosis. Most people have Ideopathic Epilepsy and will never know the cause. Best to just try and accept never knowing hard as it is.

I think there are some duplicate things here. Sorry about that.
Some, if not most, of my Neurons must be on vacation.

@rachelanne

Dear History Girl,
I have frankly been on every single Epilepsy medication, and nothing works worth a damn, and I am so tempted to frankly give up on my book entitled "Misunderstood and Resilient", because those of us whom suffer from years of constantly being treated as a "PSYCHIATRIC PATIENT, or a "NUTCASE", you start to believe it yourself!!!!! I am honestly about to get relief; as I even my current Neurologist I saw today, thinks it's also "PSYCHOLOGICAl", for the twenty millionth time! I have become so numb to being seen as a "PSYCHIATRIC PATIENT", that I just want to leave the United states; as no-one in Israel, will have access to my medical records, therefore i can finally have some relief WITHOUT ANXIETY, DISCRIMINATION, and frankly being "BRANDED" like a "COW"!
Bye for now!
Sincerely,
Shelley

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Don’t give up. When my son was getting treatment in Boston, the so called “specialist “ literally was scratching his head and had no clue what to do. He would only recommend trying other cocktails of meds. Things got really bad there. We had to sign a release to get him out of there but before we were able to go, a psychologist who only observed my sons behavior from outside in a hallway for an hour determined that it was psychological issues my son had and that we basically were part of the problem. It was the most insulting words I’ve ever heard. We left and went to the Mayo Clinic in Rochester, MN. It was like heaven on earth. They treated us with respect and compassion and also took care of my sons issues. He’s now been seizure free for 8 years. Epilepsy is complicated and varies but just keep going. Find the right doctor. Best of luck.

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