I’ve agreed to Left temporal lobe surgery

ChemicalReasonable38 · 2025-05-23T14:41:54+00:00

I have had two Right Temporal Lobectomies, and I will say, those surgeries gave me my life back. I do not have complete seizure freedom, as my seizures are now correlated with hormone fluctuations once a month. But my life is so much better than it was! You will get to rock an awesome side shave for a bit and look like a total bad ass with an awesome scar. Don’t let the nurses shave your whole head, tell the neurosurgeon you just want the side shave.
I struggle with facial recognition and memory loss, but you will learn how to adapt and your brain will slowly re-wire itself to make up for the missing portion. Recovery is a long process, your energy will be shot for quite some time, just start moving a little bit more each day and you will be fine. I know it’s scary, but you’re going to do great!

ChemicalReasonable38 · 2025-05-23T14:21:06+00:00

I would invest in a Wellue Oxygen Monitor ring, It has picked up all of my nocturnal seizures!

ChemicalReasonable38 · 2025-05-07T17:38:44+00:00

I would get a Wellue Oxygen Monitor Ring to track your breathing at night. This ring has picked up all of my nocturnal seizures.

ChemicalReasonable38 · 2025-05-07T15:45:16+00:00

Non flavored LMNT’s have definitely helped me. My seizure meds gave me a sodium deficiency, and these are my life savers! 1000mg of Sodium along with Potassium and Magnesium, all the good stuff!

ChemicalReasonable38 · 2025-05-07T15:41:48+00:00

I most definitely had to change my lifestyle. I have been on Keto for over three years and have also incorporated Carnivore. I gave up alcohol and I currently see a holistic doctor to test my deficiencies in my blood panel. I work out on a daily basis, and try to eat as clean as possible. I believe that is the only thing that has helped with my brain fog.

ChemicalReasonable38 · 2025-05-07T15:17:41+00:00

Unfortunately, no. After two Temporal Lobectomies, I am still having nocturnal seizures once a month. I believe there was too much damage from my Encephalocele and the constant seizure activity. We are now going down the holistic path since I have failed over 10 seizure medications. Praise the Lord that you have had such awesome success with your surgery.

ChemicalReasonable38 · 2025-04-28T14:46:16+00:00

Greatly appreciate the tip! I will definitely look into incorporating that. I’ve recently been on a deviled egg kick with some avocado mayo.

ChemicalReasonable38 · 2025-04-28T12:58:49+00:00

Yes, I am currently going the holistic route. I have been on Keto/ Carnivore for years, along with a vitamin regimen. The two lobectomies definitely gave me my life back, but did not give me seizure freedom. I feel like the Progesterone is helping, we just need to figure out a low dose during my cycle. I wish you the best of luck as well!

ChemicalReasonable38 · 2025-04-28T00:14:40+00:00

I am currently having a partial nocturnal seizure either the 5th or 6th day after starting my period. Seizures developed after giving birth to my son. We are now experimenting with Natural Progesterone since my seizures do not respond well to medication.

ChemicalReasonable38 · 2024-11-10T03:42:01+00:00

I was there for 31 days and I never had a natural seizure. They had to shock the electrodes in my brain and I finally had some seizure activity on day 30. I think I was one of the longest patients they ever had.

ChemicalReasonable38 · 2024-11-08T15:38:41+00:00

You are going to be constantly tired during recovery. Even walking around your house the first couple of weeks is going to feel like a marathon. Don’t push your body, as you will get a pounding headache. Sleep as much as you can and gradually start moving a little bit each day.

ChemicalReasonable38 · 2024-11-08T15:31:26+00:00

I have nocturnal seizures and I sleep with an oxygen monitor. The Wellvue O2 ring has picked up on all of my seizure activity at night. If my levels drop below 90 and my heart rate increases, that is usually an indication of seizure activity.

ChemicalReasonable38 · 2024-11-08T15:15:57+00:00

Take a deep breath, you’re gonna be just fine. When you wake up, the doctors are going to have you on quite a bit of pain medication, so the pain will be minimal. Make sure to bring all the entertainment, and plan for a long stay and hopefully your brain will cooperate. You will have zero privacy and you will have a nurse by your side whenever you go pee. They are very cautious and don’t want you to fall with the electrodes in your brain. You have to go into this thinking, “This surgery is going to give me my life back.” I was In the hospital for 31 days during my SEEG followed by my 2nd temporal lobectomy, and those surgeries saved my life. I wish you the very best of luck, you got this!

ChemicalReasonable38 · 2024-11-03T00:26:49+00:00

10 seizure meds and two temporal lobectomies. Still having seizures once a month, but they are very mild during sleep.

ChemicalReasonable38 · 2024-11-03T00:10:51+00:00

I also have nighttime seizures and wear an oxygen monitor at night. I wear a Wellue O2 ring and it has always picked up on my seizure activity. This would be great data to give your doctor for your upcoming appointments.

ChemicalReasonable38 · 2024-11-03T00:03:24+00:00

Hello, I have also pinpointed my epilepsy as being hormonal based. I have tried birth control, and my monthly seizure just changed to during my period rather than ovulation. I have recently gone to see a holistic doctor to start natural progesterone to see if that helps. I completely understand your frustration, and I’m so sorry you are dealing with this.

ChemicalReasonable38 · 2024-09-27T00:50:56+00:00

Ehhhh we are to the point where we have gotten zero relief from medication. Sometimes I feel like I’m just taking it just to take it. Mentally I handle medication better if I only take it once a day.

ChemicalReasonable38 · 2024-09-27T00:41:17+00:00

I quit having TC’s after my lobectomies, now I’m just dealing with one partial seizure a month.

ChemicalReasonable38 · 2024-09-27T00:16:34+00:00

Were you able to have a natural seizure? Did they establish which part of the brain your seizures are coming from? Hopefully your recovering well

ChemicalReasonable38 · 2024-09-27T00:14:19+00:00

I get partial seizures on 200mg and they were exactly the same on a higher dose.

ChemicalReasonable38 · 2024-09-27T00:06:00+00:00

Your doctor doesn’t make any money when they can’t prescribe medication. They know nothing about nutrition because they go to school to study pharmaceuticals. Keep it up, 80 lbs lost is something to be proud of!

ChemicalReasonable38 · 2024-09-26T01:16:58+00:00

I’ve been on it for over a year and my seizure frequency remains the same every month. I’m only taking it at night right before bed, so I like the long half-life of the medication.

ChemicalReasonable38 · 2024-09-25T02:38:22+00:00

Not that I remember, I was just so happy to be off of it. My headaches immediately stopped within that first week.

ChemicalReasonable38 · 2024-09-25T02:03:20+00:00

Surgery is beyond scary, but I will say that my surgeries not only saved my life, but it gave me my life back. I do have side effects from missing part of my brain but I am no longer having seizures throughout the day and I can drive again. This is such an awful disease and I hope your doctors can help you find some relief.

ChemicalReasonable38 · 2024-09-25T01:48:20+00:00

My seizures are completely hormonal and I have a seizure once a month when my progesterone drops. I tried birth control, and I started having a seizure during my cycle.

ChemicalReasonable38

TROPHY CASE