u/calimom99

I wonder if anyone similar?

I saw this rule and I am 1 year away from being 55. Going back to my job, would be dangerous, possibly even fatal if I have a breakthrough seizure. Which lets be real, you never REALLY know how long you may or may not be seizure free.

2. Easier to Prove Disability:

• For individuals aged 55-59, if you can no longer perform your past relevant work and have no transferable skills to other work that you can perform given your residual functional capacity (RFC), you are more likely to be found disabled.
• Reference: Nolo - Social Security Disability Over Age 55

The Dr. (Epilepsy specialist Neuro) at Mayo wants my husband to wait until he "fails meds" before proceeding with an EMU stay. He is on Keppra 3000mg a day and Lamotrigine 400mg a day. He started the Lamotrigine titration slowly (at 25mg a day) the first week of April, after having his 4th TC on March 30th. Though he has had 1 Focal (that we have witnessed and are aware of) on 5/28 since being on both meds. As of right now he is seizure free 4 months and 8 days (from TC). We are in the thinking of, why not do EMU stay now? While he still has his "Good" insurance?

Once he hits 6 months seizure free he is supposed to be released back to work by our local Neuro, but we all believe (including the Neuro) that his job is too dangerous for him. The early mornings (between commute and start time he will be getting up at 4am) and the type of blue-collar work, if he has a seizure at work it could be fatal to have a TC around heavy machinery, heights, etc. or he can make a fatal error if he had a Focal Seizure (Fire Sprinkler Repair/Inspection Tech) Or if he has a TC while driving. So far his TC's have all occurred between 11pm and 3:30 am while asleep in bed, but his early morning hours concern us.

His MRI found an encephalocele at his skull base, why wouldn't we do an EMU now to see if that is the cause and work towards a more permanent fix than meds? This is all so frustrating.

My spouse may be losing his Union Medical Coverage end of Oct or Nov due to his short-term disability since 9/2/26. At this point he is due to be released back to Union Blue collar job mid Oct. But may get extension to Nov 15 to allow time to try to get his license reinstated. His current coverage is $0 premium and $400/person Deductible. It has been amazing! But at this point it may end 10/31 or 11/30.

Our options are:

Aetna plan through my work $895.63 a month for a family plan. I "think" we can still see all our doctors.

OR go through Covered CA and seems we "may" qualify for:

Blue Cross HMO Silver 87 - Qualify for $169.25/mo. who seems to contract with Stanford Docs I see (we can get him a Stanford epileptologist) Qualify for

Blue Cross PPO Silver 87- Qualify for $499.89/mo. Who seems to contract with Sutter Docs (he currently has a Sutter Neuro and a referral for a Sutter epileptologist) I would have to switch, which I don't love, because I love Stanford, but I don't have a current chronic condition to the extent of his.

Kaiser 87 HMO- Qualify for $0/mo. we both would have to switch all providers we see, but there are tons of Kaisers near us and I am used to Kaiser as I used to be a patient and have spent a lot of time there with my parents and my grandmother over the years.

All that to say Budget matters. I really cannot afford any of it since he will have zero income.

Looking for some outside opinions

(54) Male. Started having seizures out of the blue last year. Blue Collar, Union Guy. STD ends early September, being maxed out at 1 year. No Long-Term Disability coverage. No savings. I have a pension (can't collect until 55 if Fed labels me disabled, application pending, could take 6months and may likely be denied, heard it is hard to get) My job is dangerous Fire protection industry for the public commercial sector. Having Tonic Clonic and or Focal Seizures at work could kill me, or others if I have a seizure and don't remember to do something. Think, fire sprinklers may not start during a fire type of situation. I have no skills other than my usual blue collar job. No Drivers license to get anywhere. Only access to money right now is my 401k. Other than a hardship withdrawal to stop foreclosure, I can take a onetime withdrawal after not working for 1 year. Not really sure what else to do at this point. I have about $246k in the account. Any thoughts?

Zepbound in Fridge to expire in few months, still too scared to take it! I have severe health anxiety and fear some of the serious side effects you hear rumored, eye issues, stomach issues, pancreatitis. But my weight is also causing me issues. I need to get this weight off. I have like 50 lbs to lose. ALL my diff docs say I should use this stuff. My Liver doc, my bypass doc, my neurologist (I had a brain bleed in 2024) but I just can't get myself to do it. Help!

My husband has had 4 TC since 8/29/25 (nocturnal) (at age 53), the last two of those I witnessed start as Focals first, and transition into TC's.

I have witnessed one Focal (daytime) and a Focal only (nocturnal).

Meds as follows:

No meds after 1st TC, after 2nd TC 500 Keppra 2xday, then after 3rd TC Keppra increased to 1000 2xday, then after 4th TC Keppra increased to 1500 2xday + starting titration of Lamotrigine at 25 a day up to his current dose of 200 2xday. He is currently on 3000 a day Keppra and 400 a day Lamotrigine.

The only seizure he has had since adding the 2nd med was a nocturnal Focal on 5/28/26. This was when his Lamotrigine was at 250 a day dose.

I feel like I am sitting on pins and needles waiting to see if he has anymore seizure activity at his med dose now. Or if this is it and he will be good? I hate the not knowing.

Current dose:

levetiracetam              1500 2xday

lamotrigine                  200mg 2xday (just got to this dose last weekend) Started titration at 25mg 2xday

My husbands new Epilepsy Dr. at Mayo Clinic increased his 150 2xday that he had gotten up to right before his visit with her on 6/8. She had him do 175 2xday then 200 2xday.

She said once he reached the 200 2xday she could start tapering back his Keppra. I am a little worried about this approach. We would like this to happen, due to mood issues. However, the lamotrigine was added after his visit with his Neuro on 4/3 after his 4th TC on 3/30/26. His Neuro added it in hopes of stopping the seizures that he still had on 2000 Keppra a day, and to help with his moods. So far it doesn't seem to really be helping with the moods.

He has had one focal seizure (that I have witnessed) but since he is alone a lot, and I am normally sleeping when he has these seizures, we do not know if he is still having more Focals that just aren't being witnessed, or if none are truly happening.

Looking for others experienced in a similar med plan to try to drop Keppra.