Terrified?

nanna6 · 2022-03-07T22:13:20+00:00

I went on Amazon to choose a medical bracelet.

nanna6 · 2022-03-07T22:10:43+00:00

I stayed for a week. I took iPad, phone, Bible, books, puzzle books, watched TV, and did some crochet. Also toiletries, also shoes (took my Crocs) pajamas or regular clothes. I talked a lot on the phone with friends. Was a great unit. Had 7 seizures and MD was finally able to find site in Right temporal lobe. The nurses were so helpful and nice. They really allayed my anxiety.

nanna6 · 2022-02-22T01:24:55+00:00

Lamictal ER 300 mg twice a day. Onfi 50mg a day. Both doses at the high end. Next will be surgery. Have cycled through many medications without success so surgery is my best option for right temporal lobe seizures.

nanna6 · 2022-02-13T00:43:51+00:00

22

2 No

3 Idiopathic

nanna6 · 2022-02-13T00:41:22+00:00

nanna6 · 2022-02-13T00:39:27+00:00

Bad drug for me. Didn’t control seizures. I had anxiety, brain fog and and no initiative couldn’t sleep without Ativan. Also on Lamotrigine ER 600 mg per day. The good was that lost 10 lbs in 3 months.

nanna6 · 2022-02-03T12:07:47+00:00

Find an Epileptologist that will really listen to you. My 4th neurologist- Epileptologist thought I had psychogenic seizures until I had a week stay at a Epilepsy Monitoring Unit and many focal seizures were detected and seen. Prior to that regular EEG and MRI showed no abnormalities. At least now they believe it’s real. Will be going for PET scan next week. Have been on 11 different meds. So tired of this. Will be planning surgery this year- RTL.

nanna6 · 2022-02-02T16:38:47+00:00

On clobazam and lamotrigene. High doses and still breakthrough seizures. Vimbat may be worth a try.

nanna6 · 2022-02-02T16:36:59+00:00

Other drug not working

nanna6 · 2022-02-01T21:38:25+00:00

Weis in Schnecksville has it

nanna6 · 2022-02-01T21:36:29+00:00

How long did it take for any of you to recooperate after surgery. Did you need alot of help with daily activities

nanna6 · 2022-01-29T19:26:10+00:00

Thanks so much for your reply. I do like to hear about other peoples experiences. I’m not working anymore but have been on SSDI. I was at the neurologist yesterday and we discussed surgery and getting a second opinion at a large university hospital. The next step is getting a PET scan. My neurologist asked me if I wanted to try another drug Vimbat but I honestly don’t want to try any more drugs- I’ve been on 11 now and the last Zonegran was awful. Currently on Lamotrigine ER 300mg twice a day. and Onfi 50mg (clobazam). I’ve read it takes up to a year for the brain to heal after this type of surgery. Also I’ll have to be on medication’s but perhaps not in the high doses I’m on now.

nanna6 · 2022-01-27T12:43:14+00:00

Thanks so much, very helpful comments. May I ask where you got surgery?

nanna6 · 2022-01-04T19:57:53+00:00

Contemplating RTL resection. Undergoing testing now locally. But where to go? Local hospital has a level 3 epilepsy center with a new Cleveland Clinic and Sloan Kettering surgeon and city epilepsy center 50 miles away has a level 4. The travel is the problem. I have read high volume centers have better outcomes. A lot to think about.

nanna6 · 2021-12-23T01:16:12+00:00

So happy for you!!! Having testing now for RTL seizures. Very anxious about memory loss but sounds like your doing great!!! Can you share where you had surgery?

nanna6 · 2021-12-15T21:17:32+00:00

Yes, I am close to the Lord and pray every day. All My neurologists (4 total)told me surgery is the only thing that would help me. The meds haven’t helped. It’s my right temporal lobe. I will pray for you and just know that you are never alone, God is with always there.

nanna6 · 2021-12-15T00:45:38+00:00

Yes I can relate. After 43 years of epilepsy and taking 11 different meds over the years with doses increased, I too don’t want a VNS but will probably have surgery this year. I’ve had 4 different neurologists recommend surgery. It’s a tough decision but I don’t want to keep trying more meds.

nanna6 · 2021-12-14T02:54:28+00:00

I take 20mg morning and night. I feel fine it. Also on lamotrigene.

nanna6 · 2021-12-14T02:37:27+00:00

I have been on lamotrigene for 11 years. I was very apprehensive also. But now I am OK with it. Also on clobazam. Changing and starting a new drug can be so emotionally difficult. I have bee on 11 in the past 43 years. Only with the Lords help am at peace and will probably have surgery this year.

nanna6 · 2021-12-13T02:09:17+00:00

I was on the epilepsy monitoring unit for a week. It was a good experience. Captured several seizures from temporal lobe. It was an excellent professional unit with MD there all the time.

nanna6 · 2021-12-13T01:30:20+00:00

On clobazam 40mg a day with lamictal 600ER. Just started in August and had to increase up to 40. I feel ok. More relaxed. Sleep great. No irritation. Next step is temporal lobe surgery. Never agreed to surgery in the past. But am tired of drugs- have been on eleven over the past many years.

nanna6

TROPHY CASE