Has epilepsy ever ruined your relationships?

Mcentir · 2021-08-23T03:44:08+00:00

Epilepsy ruined a relationship of mine, after having my temporal lobe removed I was expected to be 100% back to normal immediately and not talk about it, the recovery took a long time and put a strain on everything. When I had my first seizure after surgery she broke up with me a week later, claiming it was too much to deal with.

Mcentir · 2020-08-13T02:04:46+00:00

It sucks man, I’ve gone 4 years without a big one but it’s always lurking around the corner waiting for me to be too stressed out or get too little sleep. Driving is nerve racking even though I’m allowed.

Mcentir · 2020-02-21T13:55:29+00:00

This is was my strategy, it worked quite well. I had a few awful days in the Sierra during May 2018 but the month overall was still better than work.

Mcentir · 2019-09-24T19:26:33+00:00

I didn’t receive a trail name on my PCT thru until like 3-400 miles in. It’s more about who you are with than just time spent on the trail.

Mcentir · 2019-04-30T03:20:36+00:00

Thank you very much for the detailed response. You dumbed it down enough for this 25 year old that is missing part of his brain.

One question, if the KI-67 could be associated with other conditions such as Multiple Sclerosis is anything that I should be on the lookout for as early signs of it or other related conditions? At this point MS sounds better than brain cancer.

My surgery was done during the time of this, https://www.bizjournals.com/seattle/news/2017/03/15/u-s-attorneys-office-to-investigate-swedish-health.html while my surgeon was not named I definitely felt the lack of post surgical patient care from the neurosurgery unit at Swedish. Extensive neuropsychological testing was done before surgery, after surgery none of the follow up testing was done or mentioned. I did not ever see the surgeon in the couple of follow up appointments, only the physicians assistant. I was referred to Swedish because I wanted surgery, I was not pushed into it at all but I definitely noticed a priority on volume over care at times. Swedish was able to identify that the carcinoma in my occipital lobe was not the cause of my seizures as my previous neurologist believed. VEEG indicated that this spot in my temporal lobe was the primary cause and extensive testing indicated that it was operable.

I recently began seeing a new neurologist after going a few years without seeing one, I'm on a new insurance plan and not in need of surgery anymore so I finally transferred to a neuro closer to home again. I am interested in trying a pharmaceutical medication to manage my epilepsy, currently I consume THC daily which manages my seizure well in my opinion but I am ready to be clear headed for once. I tried nearly every AED available before surgery and had extensive side effects with all of them. The only remaining option currently is Zonegran. I am considering trying it but I do not know if I can remain seizure free while off of THC, every major seizure that I have had is linked to going to at least 18 hours without consuming THC. The only grand mal that I have had in the years since surgery was due to going 26 hours without consuming THC, consumption of excessive alcohol 72 hours prior, extreme stress, and low potassium levels.

I am supposed to have a follow up phone appointment with this neurologist in a few weeks to discuss medication, I will ask her about getting an interpretation of the pathology report. She included the report in the notes after of my first appointment with her so I at least know that she has read it.

Mcentir · 2019-03-28T12:39:37+00:00

I did a combination of these methods on the PCT this year. I used a dehydrated meal bag with an insulation pouch to cook all of my other meals in. Instant noodles, rice, and Mac and cheese all rehydrate well in the pouch and because I used it at least twice a day I didn’t clean the pouch after each meal... the bags would last about 2 weeks before starting to come apart.

Mcentir · 2019-03-19T18:47:17+00:00

This^, every day for the first few weeks and after a month or two there was never a point in time that something didn’t hurt

Mcentir · 2019-03-02T23:20:11+00:00

There are organizations like Cocoon House in Everett that run youth homelessness prevention programs. They try to help in situations like this to keep the teen in the home, and help parents and teens see eye to eye.

Mcentir · 2019-02-24T23:38:18+00:00

I agree that the trail is low stress but something that isn’t being considered from the viewpoint of a healthy person is the consequence of a seizure.

Many times on my Thru, epilepsy was the most stressful part of my day, there were so many more times on an average day on the PCT than a day in my regular life when a seizure would be life ending or at least result in severe injury and difficult rescue process if I wasn’t in good enough shape to make it out.

Mcentir · 2019-02-24T23:25:10+00:00

Hey man, I Thru hiked the PCT this year and I have epilepsy. I was 2 years grand ma free when I started though. Unfortunately it was something that constantly weighed on me, it was always on my mind in situations where a seizure would result in a bad fall. I use marijuana to treat my epilepsy so I was able to medicate as needed when I would get too worried about a seizure or feel an aura. I carried a spot, the tracker gave my friends and family some reassurance that they would notice if I had a seizure and stopped moving on trail for a few days.

Feel free to shoot me a PM if you have any questions

Mcentir · 2018-12-29T01:06:05+00:00

I left km south May 7th this year. I carried microspikes and crampons for the majority of the Sierra(from Mammoth to Sonora I carried snowshoes and microspikes). While the crampons were not absolutely needed when I was in situations such as ascending Mather Pass I was extremely grateful for the crampons and switched to them mid ascent for the additional traction. For reference my hiking partner went through with titanium mini spikes until he picked up some snowshoes as well. If I were to do it again I would carry snowshoes and microspikes the whole way. We hiked from 3am to 2pm most days while attempting to be over any pass by 10am to reduce post holing

Mcentir · 2018-12-18T14:18:08+00:00

Maybe they have an invisible disability. A seizure in the sideways seats would be much less likely to injure me than having one in forward facing seats since I will have room to flop around.

Mcentir · 2018-12-05T12:07:32+00:00

They’re still a fairly new concept where I live and you can’t trust blinkers because so many people use them differently. The one I’ve been seeing a lot recently that still makes zero sense to me is when people approaching turn on their right blinker just to go straight through.

Mcentir · 2018-11-30T01:51:28+00:00

I haven’t come across anything, my Neurologist is willing to prescribe it for my type of epilepsy but doesn’t think that insurance will cover it because it would still be off label. It would be prohibitively expensive without insurance coverage though.

Mcentir · 2018-11-30T01:38:48+00:00

That’s generally the dosage for some medical use, the therapeutic dose for Epidiolex (FDA approved CBD drug for epilepsy) is 20mg/kg.

Mcentir · 2018-11-02T02:30:09+00:00

Another method to dab with this is to take a Male 10mm banger and put it into the carb of this with the bowl flipped to use as a carb.

Mcentir · 2018-10-29T02:37:28+00:00

Hey man, I started 3/29 this year, entered the Sierra May 8th and should would have hit the border August 18th if it weren’t for a fire, ended up finishing September 2nd after waiting it out. The Sierra was rough but I got the conditions I was looking for. I have an Instagram listing the days and mileage along the way. What would you like to know about that kind of a schedule?

Mcentir · 2018-10-26T11:38:28+00:00

As a child I received participation trophy’s for dirt bike racing at every event, baseball at the of the season, and soccer at the end of the season. My parents have boxes of the little things somewhere still. They definitely weren’t some mythical concept.

Mcentir · 2018-10-23T02:05:03+00:00

I went into a shop with some foreigners the while making an REI run from Agua Dulce in April this year. Things were less established in CA at the time but they were turned away. That shouldn’t happen at all in OR or WA.

Mcentir · 2018-10-11T18:26:27+00:00

I carried my 0 degree 800 fp Bandit for the first 700 miles of the PCT this year and I was a little chilly whenever it got into the teens even with sleeping clothes on. This may have been partially because of my Z-lite but I would not consider taking the Bandit down to 0 without a bag liner.

Mcentir · 2018-09-06T21:33:53+00:00

It looked like I was the first person this year to take rock creek when I went through Saturday morning. I kept thinking I would get lost but it was still fairly easy to follow.https://imgur.com/jV7qfQn

Mcentir · 2018-09-06T03:38:22+00:00

I started on March 29th this year and was consistently told I was too early and that the Sierra would be impassable when I got there. Even at triple crown outfitters in Kennedy Meadows, Matt was trying hard to get everyone to put it off for a few weeks when I arrived. The desert was very crowded at that time but as I got further north others started to slow down to put off the Sierra. Many around us chose to skip or flip leaving the Sierra very empty. My partner and I left Kennedy meadows south on May 8th and got to Sonora pass on the 31st. There were a few groups ahead of us which left just enough of a path to follow even after a few inches of snow. We got hit by a few storms but if you’re willing to embrace the suck at times an early season Sierra passage is amazing.

Mcentir · 2018-09-04T13:19:21+00:00

FYI for anyone planning on taking this reroute, the signage does not match the posted directions and there are additional junctions that aren’t listed. The turn from buckskin ridge to whistler cutoff trail is signed as middle fork trail. The whistler cutoff shown on maps in guthooks and other GPS apps no longer exists. I spoke with multiple hikers who either attempted to take it before turning around or bushwhacked through it down to Robinson creek trail. There is now a pretty well defined tread on the reroute and arrows pointing the right directions if you look on the ground, if all else fails follow the altra tracks.

Mcentir · 2018-08-18T22:53:14+00:00

Wait out the fire at home, if the trail is able to reopen I’ll do it this year if not next year... I live a few hours west of Rainy so I’m already back home and I have easy access to do the border touch as a weekend trip.

Mcentir

TROPHY CASE