Limited life of seizures since I was 2. Any hope for seizure-free?

Posted by TabMar @TabMar, Oct 28, 2015

I have been battling with a seizure disorder since I was 2 years old – for 45 years. I had been incorrectly diagnosed throughout most of my life and being born in 1968, there wasn’t enough technology, progression, or knowledge to help me. Where I live, there isn’t any neurologists that treat adults other than one and they don’t appear to care too much. The feeling I get is that I am too old to improve my quality of life. All I know is a limited life of seizures. I want to be seizure free before I die. Can the Mayo Clinic help me please?

Hi @TabMar, that is a long time to go incorrectly diagnosed. You are never too old to improve quality of life. Do you have a diagnosis now?

It is very easy to request an appointment at the Mayo Clinic. Go to this page http://www.mayoclinic.org/appointments where you can find phone numbers or, if you prefer, an online form. Let me know if you have any problems getting through.

In the meantime, if you want to talk to others on Connect, you can join the conversations in these groups
Brain and Nerve https://connect.mayoclinic.org/group/brain-and-nerve-diseases
Epilepsy https://connect.mayoclinic.org/group/epilepsy/

In the Epilepsy group, meet @kevinkelley who also recently joined Connect and would like to talk with someone. https://connect.mayoclinic.org/discussion/those-with-epilepsyseizures-have-you-encountered-any-brain-difficulties-because-of-that/

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@colleenyoung

Hi @TabMar, that is a long time to go incorrectly diagnosed. You are never too old to improve quality of life. Do you have a diagnosis now?

It is very easy to request an appointment at the Mayo Clinic. Go to this page http://www.mayoclinic.org/appointments where you can find phone numbers or, if you prefer, an online form. Let me know if you have any problems getting through.

In the meantime, if you want to talk to others on Connect, you can join the conversations in these groups
Brain and Nerve https://connect.mayoclinic.org/group/brain-and-nerve-diseases
Epilepsy https://connect.mayoclinic.org/group/epilepsy/

In the Epilepsy group, meet @kevinkelley who also recently joined Connect and would like to talk with someone. https://connect.mayoclinic.org/discussion/those-with-epilepsyseizures-have-you-encountered-any-brain-difficulties-because-of-that/

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Hi. Thank you for the reply and information. Yes – I have a diagnosis now as Temporal Lobe Epilepsy. Once I get all my testing results from my current MD (who isn’t helping me), I will request an appointment with the Mayo Clinic. Thank you again 🙂

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You’re welcome @TabMar. I also see that you’ve posted to Emily in the Epilepsy group. Having a diagnosis helps find people who may share similar experiences. See you in the group.
Colleen

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@colleenyoung

You’re welcome @TabMar. I also see that you’ve posted to Emily in the Epilepsy group. Having a diagnosis helps find people who may share similar experiences. See you in the group.
Colleen

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Hi TabMar, I too have been very much so, battling with a seizure/epilepsy
disorder for a # of years and with that I have experienced a large, great
many various attempts/methods in the ‘repair… we are nearly the same age,
and the question I had for you is if you have the memory/organize
difficulty that I seem to very much have? Had a seizure this morning, seemed as a
partial grand- mal (is possible?) and today was like starting all over
again…do you experience anything like that? I have a great many things with
my epilepsy disorder that I would gladly share in a more distinctive manor
if wished or needed… let me know, thanks Kevin Kelley

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@kevinkelley
I know it’s been a long time but if you are still monitoring this thread I’m curious about something you said. Could you please let me know if you’re still around?
Thank you,
Jake

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I feel the same way. I've had seizures 40 years. They're not Grand Mal. I told the new doctor I am seeing now I'd like to have a seizure free life. I'm 70 years old, don't know that anything will change though I still keep trying.

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Hi @TabMar
Please, do not think that you are too old to improve your quality of life !!!
Sharing a bit of my story. I was born in 1970 and I also have temporal lobe epilepsy with mesial sclerosis, having been incorrectly diagnosed. I have lived more than 40 years of my life without knowing I had epilepsy (most probably, my epilepsy is due to an accident in my childhood) and without treating it. But in 2018 things have changed suddenly in my life and I got the diagnosis of epilepsy in February 2019. Since then, I have already tried 5 different medications not controlling all my seizures or not being able to tolerate the side-effects of medications. This was very frustrating and I can very much understand you. Today, I take Tegretol (carbamazepine) at a very low dosage together with CBD (cannabis). I am much better this way than with those anti-seizure medications and their several side-effects, even though I have some 3 focal complex seizures per month, which is not good. Recently, surgery has been recommended to me, something I am evaluating very carefully since my epilepsy is on the left side of my brain.
Sharing how I have improved my quality of life since I started medications. In 2018, I started to practice hatha yoga, which calms me down and does much good to me. Today, when I am stressed (my major trigger to seizures), I practice yoga and I believe that it has even helped me to avoid some seizures. Yoga also helps me to relax after a seizure. In 2020, I discovered yoga nidra, also known as yoga sleep. With the anti-seizures medications, my sleep problems have worsened a lot. I practice yoga nidra every day to recharge my batteries. There are studies saying that 30 minutes of yoga nidra corresponds to 2 hours of deep sleep. If you have trouble sleeping or sleep problems, try it! I practice it with my yoga teacher and also through the app Insight Timer.
Something else that has also improved my quality of life was the use of a rescue medication. I have already shared my experience here at Mayo Connect in the epilepsy group.
And last, a lesson that I have learned since I have been diagnosed with epilepsy refers to doctors, especially when one has refractory epilepsy as I do. Based on my experience, it makes a great difference when you are treated by an epitomologist and not just a neurologist. Today, one can more easily schedule a virtual appointment with doctors of other cities and states.
I hope I have helped you a bit through the sharing of my experience.
Please do not give up! All the best to you!
Kind regards, @santosha

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@TabMar
Your never too old to improve your quality of life. I don’t believe you should be assuming what the doctor thinks. Lots of Physicians are uncaring uncompassionate jerks but I have had a couple of them who were good doctors.
I was diagnosed with E at 14-15 and had seizures every day or near every day and that went on for 44 years but at age 59 my seizures stopped. At rhat time I’d had over 13,000 seizures.
I had been in induced comas for over 3 years (at least) when added together. I was in a coma at age 15 for eight months. When they woke me up every memory I ever had was gone and none ever returned.
I strongly advise you to go to the Mayo Clinic Epilepsy Center and if for any reason you can’t you should go to a Comprehensive Epilepsy Center somewhere. Here is a list of Centers. If I were you I’d go to a lever 4 Center. They are in every state. Here is a list for the United States,
https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/
When you go don’t be shy about advocating for yourself and if that’s difficult for you take someone with you who can advocate on your behalf.
Best of luck,
Jake

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@kevinkelley

Hi TabMar, I too have been very much so, battling with a seizure/epilepsy
disorder for a # of years and with that I have experienced a large, great
many various attempts/methods in the ‘repair… we are nearly the same age,
and the question I had for you is if you have the memory/organize
difficulty that I seem to very much have? Had a seizure this morning, seemed as a
partial grand- mal (is possible?) and today was like starting all over
again…do you experience anything like that? I have a great many things with
my epilepsy disorder that I would gladly share in a more distinctive manor
if wished or needed… let me know, thanks Kevin Kelley

Jump to this post

@kevinkelley
Hi Kevin,
I have never heard the term partial grand mal before.
Are you perhaps talking about a partial seizure which starts in a specific spot on one side of your brain which becomes a Grand mal seizure which affects the entire brain? could you explain that term?
Unfortunately memory problems and Epilepsy go hand in hand.
Anything you have to share about your Epilepsy is very much appreciated more detaied the better. Other members may benefit from your journey.
Hoping you have a seizure free future,
Jake

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