New to epilepsy and need guidance and support

Posted by facenu @FaceNu, Mar 18, 2016

Hello!
I am a 38 year old woman, married, mom of two daughters (9,10 respectively). Have suffered with chronic daily migraine since 2002. Very recently diagnosed with Epilepsy. I don’t particularly like neurologist who I was assigned to — I’m on my 3rd medication (Lamictal?) and I have so many questions. (I’m looking for a new doctor!)

Right now I feel like I’m living in fear of my own brain. This last seizure came out of the blue, while I was getting my daughter ready for dance class. Since that day (Jan 25, 2016) I have had 2 abnormal EEGs.

I feel like I need some — guidance, advice support. Would love to hear others experiences – especially from those who have been diagnosed with epilepsy in adulthood.

Thank you!

@19aleckelly

Have you ever tried propranolol? It’s a beta blocker and used for
migraines. I take 1 every day and my migraines have been gone for yrs.

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Yes, we tried propranolol. Did not help. I appreciate the suggestion though! 🙂

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@FaceNu

That sounds so frustrating!! He has all of these physical, concrete, actual symptoms, yet they have no way to physically, concretely and actually explained what happening with the body.

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Yes, it is Very Frustrating! He Was able to recently receive Disability so that has eased some of the issue of affording his medications. Actually, the System must have been having Major problems with a certain Disability Judge because as soon as our son was approved, THEY offered to Go Back and Try Again for the first denied judgement, which they have just overturned! The lawyers said they had NEVER heard of such! So DON'T GIVE UP on trying for Disability!

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facenu@ Facenu I am sorry to hear that you have migraines and seizures. I have both of the too. However, the seizures began at age 6 and the migraines began in 1997. They are atypical. Migraines are not related to seizures they say. Many anticonvulsants, including Lamictal can have anti-migraine effects. Depakote and Gabapentin are common ones There are many triptans, none of which have helped me. Now they medicines that are injectable, and Botox where they use tiny needles around your head. Have you tried any of these things? Best of luck to you.

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@colleenyoung

Hi @irvkay312 @FaceNu @19aleckelly @beccahp @debburrington
Just checking in. How are you doing? @FaceNu how did you appointment go this week with your neurologist?

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It is interesting to see that there are others with very frequent migraines. Mine are daily, mainly nocturnal but only 24/7 at times Weather changes and springtime often cause my migraines to be extremely severe that I am confined to bed for a whole week. Debburrington, Topamax and Lamictal are anti-seizure medications yet they caused seizures in you? How unusual. Now I know someone else who has most likely taught doctors something new. Just like me. Seizures are not related to migraines! Where did your doctor get his catalog degree? I've tried triptans but never Verapamil. What class does that fall into?

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@beccahp

Hi! Zach, my husband, Barry, and I got Covid in January and suffered through 5 weeks of awfulness…but we Survived, when lots of our neighbors did not. 🙁 Zach still suffers with some bone pain in his shoulders and hips AND stomach issues. Barry still has no sense of smell or taste and has stomach issues. I'm mostly just tired and have some foggy-brain issues sometimes from Covid. We Did Survive although we kept a Close eye on each other and our O2 situation!! My sweet sis-in-law sent us an oxometer (?) which REALLY helped!! We were able to tell the doctor over the phone what our O2 level was and Know if we needed to go to the ER. We did not. 🙂
Zach's neurologist sent him to a Pain Specialist last week and he was Very Reluctant… thinking she would just tell him to do 'some BIOfeedback or something! 🙁 ' were his words, but she Actually had looked over his charts AND had some new ideas!! Zach, Dad and I were SOO Happy!! He is trying a 7-day patch (I can't remember the name but IF it helps, I Will let y'all know!) and using Tizanadine (sp?), a muscle relaxer for the pain. The 'Tiz' Really helps him to relax and usually sleep, which is the ONLY time he gets Any relief from the constant pain. This doctor gave him 3 Tiz a day, instead of just 1, so he is feeling a little better. I am Happier because I Actually HAVE Something to give him that will help! There's nothing more frustrating than Not being able to help your child have some pain relief!!
Thanks for checking in with us! That means a Lot!! 🙂

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Hello @beccahp

I can only imagine how happy you must be that Zach now has some meds that help him. I hope you all doing as you recover from COVID. Are Zach's new meds still working well for him?

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The new meds are helping some. 🙂 Every once in a while he has a good few hours!
Zach's body tends to get 'used to' medicines pretty quickly but we are hopeful the Pain Specialist will have some ideas to help this. He 'sees' her again tomorrow, I think.
Thank You for your care and concern!

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@beccahp

The new meds are helping some. 🙂 Every once in a while he has a good few hours!
Zach's body tends to get 'used to' medicines pretty quickly but we are hopeful the Pain Specialist will have some ideas to help this. He 'sees' her again tomorrow, I think.
Thank You for your care and concern!

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Hello, again @beccahp,

Thanks for your reply. I certainly wish Zach all of the best. Will you let us know how his appointment goes?

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Hi @FaceNu
I am sorry to hear that you still have seizures with this 3rd medication.
I have been diagnosed with epilepsy in adulthood when I was 48 years old (I am 50 years old right now). I have temporal lobe epilepsy with mesial temporal sclerosis, which is a kind of epilepsy that is more refractory than others. I have already tried 5 medications, being Lamictal one of them.
Lamictal has controlled well my seizures, but I had insomnia, not tolerating it, unfortunately.
Is your neurologist an epileptologist? When one is having difficulty treating himself or herself with medications, it is good to see a neurologist specialized in epilepsy (epileptologist) or to schedule an appointment at an Epilepsy Center. They will be able to better help you with a treatment.
All the best and stay positive!
Kind regards

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@FaceNu
Good afternoon,
Well I don’t have adult onset Epilepsy but here is some of my story.
On a Saturday morning in 1967 I was standing in front of the living room window looking out and down I went. My Dad stuck his finger in my mouth and it didn’t take long for him to regret that decision but I sure was grateful since it prevented me from chewing up my tongue & cheeks although he had quite a scar. I vehemently disagree about not putting anything in the mouth. I had mostly Tonic Clonic (then known as Major Motor seizures) Convulsive Status Epilepticus which are continuous seizures and a medical emergency and in the beginning Absence seizures but occasionally had Focal Aware & Focal Impaired and only one déjà vu Aura. Auras are Focal Aware seizures.
Do you know what type of seizures you have? Do you have Auras? If you are having seizures after a migraine (very rare) I wonder if you could have Migralepsy? If you have a seizure after a Migraine how soon does the seizure happen?
I have had over 13,000 Tonic Clonic seizures and who knows how many Absences.
I have been in induced comas from Convulsive Status, 8-10 times at least and more shorter term ones. My longest induced coma lasted 8 months and my memory was wiped clean. I had to relearn so many things. Worst loss of all was my ability to play the piano which I loved. I didn’t even know what the piano was when my parents whom I didn’t recognize or know anything about brought me home to a house I didn’t recognize.
Have you noticed any seizure triggers like being tired, lack or poor quality sleep?
I know someone who has a seizure when he plays his banjo (Musicogenic epilepsy) and another when he goes to high altitudes.
Are you photosensitive?
Seizures can cause injuries, I was lucky, my worst injuries were dislocated shoulders which I had to have multiple surgeries to stabilize but more seizures and the surgical corrections were destroyed. Doctors gave up after 3 times.
I was kicked out of school when I was a sophomore in high school due to frequent seizures.
Seizures & seizure medications can also cause memory. problems. Concentration issues can be a problem too, making it more difficult to store recent memories.
The medication your on is probably considered the best seizure medication and is effective for migraine auras and may decrease migraines or their severity.
I know this is unreasonabley long but a few safety precautions you may already know.
Don’t take a bath unless someone is with you.
Showers are dangerous too. People have drowned or got severly burned falling against handle and pushing it to hot.
Lower temperature of water heater.
Knobs are better than handles.
I cook almost exclusively using a microwave, crockpot, or air-fryer. If using cooktop use rear burners.
Also, you should have your vitamin D checked. Additional vitamin D is recommended for anyone on Antiepileptics.
Although switching from brand to generic or generic to brand or changing manufactures don't cause seizures in everyone, it does me so it's not recommended.
Take care,
Jake

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