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!

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

@scoobylisa

Thank you for your reply but I’m not sure this is the right group? Yes, he has epilepsy. But no signs or sequences of migraines? As a matter of fact, it has yet to be determined what is the cause of his epilepsy. In the last 2 years he has been to so many doctors. He has had so many medicines. But nothing seems to identify or control the seizures. I think maybe it must be the other things he’s doing while trying to regulate the epilepsy? That is why I was concerned about food or activities affecting his health as well?

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@beccahp @dawn_giacabazi Have you got any thoughts for Lisa? Such a long journey to unearth the cause of epilepsy.

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Thanks @colleenyoung. Hi Lisa!!
I to have lived with epilepsy for over 25 years. I went many many years without control. The best help I received was from Mayo Clinic epilepsy department.
http://www.mayoclinic.org/diseases-conditions/epilepsy/diagnosis-treatment/treatment/txc-20117241
I was admitted to the Hosp and they carefully studied my response to discontinuing all my medications until we figured out my triggers and types of seizures I was having. I was the started on Trileptal and been seizure free 8 years until recently. But the new ones are unrelated issues.

I strongly suggest an evaluation by the Mayo Clinic Epilepsy Dept.

Prayers for answers
Dawn

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@beccahp

Hi Ms Colleen! Zach is having ups (YEAH!) and a few downs in the past few weeks. The new doctor has him on a new medicine. Getting that regulated is a challenge! He HAS been able to get out of the house some in the past few weeks!!
Everybody at church has been just REALLY encouraging and HAPPY to see Zach out and about! All those prayers are
helping!!!
On Wednesday, Zach is going to visit his brother for a few days. Joel is a dentist and is going to do a bunch of work on Z’s teeth. All the medicines are having a horrible effect on Zach’s teeth! We hope Z is able to handle the noises and the smells AND the unfamiliar bedroom! We hope the visit goes well!
Thank you for checking back on us! I hope you have a great week!
Becca πŸ™‚

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How are you doing these days? Are Zach's meds working well for him? I hope you can update with a post.

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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. πŸ™ 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. πŸ™‚
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! πŸ™ ' 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!! πŸ™‚

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@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! πŸ™‚

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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. πŸ™ 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. πŸ™‚
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! πŸ™ ' 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!! πŸ™‚

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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. πŸ™‚ 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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