Finding a neurologist without jeopardizing your livelihood?

[Mr.21T]

Diagnosed with epilepsy at age 13 due to a mixture of hormones and brain injury from sports. Struggling to live a normal life with the use of prescription medication. Been seizure free for two years and struggling to earn enough and become consistent enough to live on my own.

I've never received a legit diagnosis on the types of seizures I've had because of reasons explained later in the topic but they're pretty much sleep-deprived tonic clonic seizures that pretty much was juvenille myoclonic epilepsy. The only times I would have seizures would be within an hour after waking up (so sleep-deprived maybe???). I avoided a diagnosis for seizure diagnosis by ignoring instructions the night before my first neurologist's EEG tests. Played football until I was 19 and I've been seizure free since age 21. Received prescription Depakote from age 16 to 21 and couldn't stand it. It killed my...."manhood". Also got really depressed, prone to outbursts, and developed a few other health effects.

I've recently given up alcohol, and a side effect of withdrawal is night seizures. I've recently had one, tried to get up for work in the morning, and had a seizure in the shower. Partially separated my shoulder and lost a job when I couldn't explain myself without jeopardizing my drivers license.

Starting to develop some serious social anxiety issues that's starting to limit me and I've been pretty seriously scared of generally going out anywhere or getting close to anyone. Lost pretty much every friend I've had including a girlfriend of two years


Looking to improve quality of life and manage this situation w/o potentially risking my sanity at serious point in my career. I've considered...


-Training a seizure alert dog that can recognize my auras


-Sunset workouts once shoulder heals.

-Piracetam + Choline daily

-Magnesium supplements

-LOTS of weed (This actually has been my "prescription" for the last two years, but I've been lowering my dosage over the last six months.)

-Getting the glasses that stop photosensitive epilepsy? Hope someone knows what I'm talking about.


I'd also really like to keep my license. I've never had an episode near a car and I've only had 3 seizures in the last 4 years. I already have a $9,000 car note and it would suck to lose all the independence I've developed over the last two years.

Anyone have any tips on how to find therapy, tests, or treatment without risking everything I have?

 

[SlimBlue]

I was a chronic toker. Lots of recreational weed will not help at all. Non-THC weed may possibly help, but we don't know for sure. It's good you're lowering your intake. And will save you lots of money.

Either way- LOTS is bad and will not help.

Don't believe the hype if people tell you normal weed will help your E, and it certainly won't help your social anxiety either. Smoking too much increases social anxiety.

Hopefully non-THC, CBD strains, or synthetic CBD meds may 1 day help us. Constantly getting ripped off hi strength THC wont.

I still have a little toke now and then, but if I do, it's just very mid-strength but high quality oldskool Thai grass, not ultra-hi-strength modern bud.

 

[Kgartner]

You can't say you've been seizure-free for two years when you recently had 2 seizures!

Honestly, it sounds to me like you are in denial that you have a serious and life-threatening medical condition. If you keep ignoring it you may do more damage to yourself than a separated shoulder. I do not have epilepsy myself, but my 16-year old daughter has had it for about a year, and I have watched her go through many different spaces about it. It makes sense to be in denial about it - there is nothing about this condition that does not suck! However, you need to move beyond denial and start being proactive about taking control. Your depression and social anxiety can be directly related to your epilepsy, and by taking control of it you may see some progress with those as well.

If your seizures occur only at night it is possible that your license is not in jeopardy (it depends on the state you live in). And there are many, many other medications besides depakote and one of them may control your seizures 100% with minimal side effects.

This is not a condition where I recommend self-medication! The consequences of seizures (particularly since you seem to mostly have tonic-clonics) are just too severe. You need to find a neurologist that you trust and who will work with you.

Best of luck to you!

 

[George__]

You can't say you've been seizure-free for two years when you recently had 2 seizures!!

It's called a break through seizure.


@OP

:hugs:

Good job for looking for help but I don't think there's going to be a sustainable way to hide this for very long. Even if you could find some illegal way to get epilepsy medication all that anxiety & stress would be bad for your seizures.

Btw when you succeed in starting over can you help me ?

 

[Mr.21T]

Thanks for the replies...Though I have been in denial about my condition, I'm not now. I did go two years without a seizure and this allowed me to drive, hold a job and internship, attend university and maintain my independence. If I lose my license I lose both of my jobs (work as a journalist and insurance agent) and any kind of financial stability I have. Both require me to drive & I have no other options beyond it.

Any seizure I've had has only come within 15 minutes of waking up. I've had tremors or myoclonic jerks and returned to bed when feeling the onset of seizures. They are as about as controlled as can be.

Also epilepsy medications are like poison...I've only taken Depakote but the side effects are worse than than the illness. Does anyone here treat their epilepsy without prescription meds?

And *sigh*....thanks again for the advice. It's going to be really hard going backwards. I can't even make friends or get a girlfriend when I drive. If do end up turning in my license....I will have no one.

 

[Kgartner]

Also epilepsy medications are like poison...I've only taken Depakote but the side effects are worse than than the illness. Does anyone here treat their epilepsy without prescription meds?

Depakote is one of the oldest meds for epilepsy; there are many many newer options, most of which can provide good control with much fewer side effects than the older meds. If that is the only medication you ever used, you may not be "as controlled as you can be!" I would suggest giving one of the newer meds a try.

I am glad that you are taking this seriously.

 

[George__]

Try Keppra

 

[Mr.21T]

I briefly took Keppra in high school for about six months before taking Depakote and I ended up throwing a desk at my classmate's head in 10th grade....was charged with assault as a juvenille due to the side effects of a drug I had taken. Also lost a lot of friends during that time. Because of the rage I had on Keppra, my neurologist ended up switching to Depakote.

This is what I mean by the side effects being worse than the drug. Seizures themselves have never harmed me, and I'm completely healthy besides the condition. I would like to have children one day and I do not want them burdened by the medicine that I take (I'm sure mothers understand me here) Any non pharmaceutical solutions???

 

[Mr.21T]

And SlimBlue....I'm a bit of a connoisseur when it comes to the chronic and I take across an 85% indica strain known as "papaya".

I use it almost like a normal person would use an opioid painkiller....after dinner & exercise, before 10 but after 9....and I'm in bed within an hour. I've studied my sleep patterns on indica strains and when I vaporize/eat it rather than smoking it, I get 9 hours of sleep at 85% quality.

I'm very interested in CBD oil treatment but I would need a positive diagnosis to receive them...bringing the issue full circle again.

 

[SlimBlue]

Papaya- nice choice! I do did like a fruity strain too, blueberry variants man myself

It's a lovely india sativa cross, but it's still got a ridiculously high THC level- I couldn't possibly smoke somthing like that regularly these days.

I'm very interested in vaping CBD ejuice however, in fact if it's possible for me to make I'll put aside a few pots in my next grow to pure CBD strains, and see what happens to my seizure frequency over a few months while vaping that..

 

[Kgartner]

I briefly took Keppra in high school for about six months before taking Depakote and I ended up throwing a desk at my classmate's head in 10th grade....was charged with assault as a juvenille due to the side effects of a drug I had taken. Also lost a lot of friends during that time. Because of the rage I had on Keppra, my neurologist ended up switching to Depakote.

This is what I mean by the side effects being worse than the drug. Seizures themselves have never harmed me, and I'm completely healthy besides the condition. I would like to have children one day and I do not want them burdened by the medicine that I take (I'm sure mothers understand me here) Any non pharmaceutical solutions???

My daughter couldn't deal with Keppra either (not rage but severe anxiety in her case). Since then she's been on Trileptal (allergic), Onfi (stopped working for her) and now she is trying Vimpat (so far so good as far as side effects, but not yet sure if it will help her seizures). If that doesn't work the next drug we'll try is Lamictal. All of those could be good options for you.

At this point my daughter is considered to have refractory (or drug-resistant) epilepsy, and we are hoping against hope that medication will work because our next option is brain surgery. And if she's not a candidate, I'm not sure what we'll do. I hate the meds too, but in her case they are way better than the seizures. When she was in the hospital 2 weeks ago she had 3 tonic-clonic seizures within 12 hours by just reducing (not withdrawing) her meds - so as far as I am concerned the meds are a blessing. So please count yourself lucky if you can say "I'd rather deal with the seizures than the side effects." We might have said that also after our experience with Keppra, but now our perspective has totally shifted. What this disease has cost her breaks my heart, but we are moving forward!

We'd love to try CBD, although it is totally unproven for focal epilepsy. One of the best things about it is the lack of side effects! However, it is not yet an option in Pennsylvania.

The only non-pharmaceutical option I know of that would not require an epilepsy diagnosis is neurofeedback, and that takes a large investment of time and money. Other than that, meds, surgery or VNS are the options.

Good luck. I hope you find a way to successfully balance your life with your epilepsy. It is a challenge for all of us.

 

[George__]

At this point my daughter is considered to have refractory (or drug-resistant) epilepsy

I'm sorry to hear that . I hope some type of medication will work for her

I briefly took Keppra in high school for about six months before taking Depakote and I ended up throwing a desk at my classmate's head in 10th grade....was charged with assault as a juvenille due to the side effects of a drug I had taken. Also lost a lot of friends during that time. Because of the rage I had on Keppra, my neurologist ended up switching to Depakote.

I think that's called keppra rage, I have it too

Also if you keep vaping so much won't your tolerance level go up the roof?

 

[Mr.21T]

George, that was kind of the plan when I was living alone in university. Get my tolerance so high that it would negate the epileptic effects & the thc wouldn't affect my daily interactions.

Was seizure free for nearly three years w/o meds but the thc took a toll...

 

[George__]

George, that was kind of the plan when I was living alone in university. Get my tolerance so high that it would negate the epileptic effects & the thc wouldn't affect my daily interactions.

Was seizure free for nearly three years w/o meds but the thc took a toll...

Ouch

I'm jealous you made it three years without medication though. I got screwed over being on and off medication for ~2 years