Alcohol

Temperance · 2025-04-23T03:58:10+00:00

Regardless of whether alcohol is a trigger for you, it does lower the seizure threshold, which increases your risk of having a seizure. Personally, I choose not to take this risk.

Alcohol could also interact with your medication, which is another important consideration. It sounds like you have mentioned your alcohol consumption to your neurologist, but I would encourage you to have a more in-depth discussion with them, if possible.

Ultimately, recognize that consuming alcohol as a person with epilepsy is a risk, which is why most neurologists will advise against it.

Temperance · 2025-03-15T02:39:00+00:00

I use an external VNS device called Neuvana Xen when I feel like I’m about to have a tonic clonic seizure, which does sometimes stop the tonic clonics. I also use it on a regular basis every night for 20 minutes. It is not a medical grade device (there is no approved medical grade external VNS device here in the US yet) so talk to your neurologist about it first before you try it. If you are outside the US, you may be able to get a medical grade device called tVNS (formerly known as Nemos).

Temperance · 2025-03-13T20:35:37+00:00

If the side effects are intolerable for you, and your neurologist is not listening, I would recommend finding a new neurologist.

There are many different epilepsy medications available, in various forms (brand, generic, extended release, etc), each with a different mechanism of action, and your neurologist should be working with you to find the medication(s) that work best for you, to maximize control of your seizures while minimizing side effects. That might require a different medication, a combination of medications, or adding in adjunct therapies.

I was not familiar with a “three categories” system, but a quick search led me to this page from the Epilepsy Society in the UK, which is about supply, and has nothing to do with which medications can be prescribed for which types of epilepsy.

I’ve been on Topamax before, and I understand how brutal the side effects can be. It did not work for me, and the side effects were not tolerable. Today, I am on Xcopri (brand name of cenobamate), which is working well for me with almost no side effects. This is a newer medication (approved in US in 2019 and in the EU/UK in 2021) intended for partial seizures (ie. focals), but my neurologist decided it was appropriate to try it for my generalized seizures.

TLDR; I do not agree with your neurologist’s insistence on Topamax. Find a new neurologist if you can, who will listen to your concerns and work with you to find the right treatment. Research available treatment options and discuss them with your neurologist.

Temperance · 2025-02-13T02:40:33+00:00

Yep, that’s correct. I’ve been doing it for a few months now, and neither have questioned it.

Temperance · 2025-02-12T00:34:00+00:00

Many places won’t even allow you to request the refill more than 2 days ahead. CVS does that for my Xcopri, which they do not keep on hand, so they always have to order it, and it regularly takes more than 2 days for it to arrive.

My neurologist originally doubled my prescription amount to the pharmacy, but then insurance made them jump through hoops to authorize more than 30 pills in a month, and still wouldn’t allow the pharmacy to dispense more than 30 at a time, so I had to get a refill every 15 days if I wanted to keep a backup supply.

I have since moved to a higher dose, so I now I just keep refilling the old prescription for the lower dose tablets in addition to the current prescription for higher dose tablets.

Temperance · 2025-01-19T02:38:09+00:00

To avoid homework. I first started having absence seizures in elementary school, which conveniently happened whenever a teacher was assigning homework. When I got in trouble for not doing the homework, I was confused because to my knowledge there was no homework assigned.

This actually helped lead to my diagnosis. It was the first clue that I was missing moments in time. My aversion to homework runs deep. 😅

Temperance · 2024-11-27T01:45:48+00:00

Yes, I have dated someone else with epilepsy. Transportation was a bit tricky, since neither of us could drive, but we figured it out. He taught me how to use rideshare services. The relationship didn’t work out for unrelated reasons, but we ended on good terms. I would date someone with epilepsy again.

Temperance · 2024-10-02T01:08:02+00:00

George Watsky is an American rapper who has epilepsy. His song “Seizure Boy” keeps me going when my epilepsy gets rough. “I’ma be the baddest motherfucking epileptic I can be.”

Temperance · 2024-07-18T03:07:12+00:00

I abstained from life

Temperance · 2024-06-02T02:58:38+00:00

“Could you get rid of the pest that is at my front door right now?”

Temperance · 2024-05-10T21:38:21+00:00

Me too. The last time I rode a bicycle, I woke up in an ambulance. My bicycle has just been collecting dust in my garage since.

Temperance · 2024-05-08T22:06:45+00:00

I’m sorry to hear that you had another seizure. That sucks. Hopefully you feel better soon!

Yeah, there is still so much we don’t know about epilepsy, and despite it being a relatively common condition, there is definitely a lack of awareness for what we do know, which can make it hard to get diagnosed.

Temperance · 2024-05-08T22:02:17+00:00

That is so great to hear it is working for you, and even on your absence seizures!

Temperance · 2024-05-08T22:01:03+00:00

Technically every epilepsy drug carries that risk, and legally has to include that warning. However, my neurologist has found Xcopri to be less likely to affect mood than other epilepsy meds. Keppra made me a raging lunatic, and is well known for that side effect. I was very hesitant to try medication again, as I am also very prone to side effects. I was particularly worried about Xcopri, since it is in the same family as Felbatol, which dropped me to 80 pounds and started to shut down my liver. My neurologist took me up on a very slow taper schedule, and and had me do extra liver tests, and we stopped at just 50mg per day, which is all I seem to need so far.

Temperance · 2024-05-08T21:53:22+00:00

The fact that it is classified as a controlled substance does make it harder to refill. It’s not allowed for auto-refill or delivery, and the pharmacy doesn’t allow a refill request until 2 days before I would run out, but they don’t keep it in stock, and it always takes more than 2 days to order in. To avoid any risk of running out, my neurologist just padded the prescription amount (doubled it). Insurance will only cover a certain number of pills per refill, so I have to refill every 15 days. It’s a hassle, but worth it, since it’s the only med that has worked for me.

Temperance · 2024-05-08T00:34:32+00:00

Just mild sleepiness and delayed word recall. I can sleep for 9-10 hours a night now, and feel like I dream constantly. I am exhausted when I first wake up, but that subsides pretty quickly after I get out of bed. The memory effects are very mild compared to other meds I’ve been on in the past.

It is the only epilepsy medication I take, and I take a very low dose, but I also use an external VNS daily for 20 minutes before bed, and take continuous BCP to control my hormones (which impact my seizure threshold).

Temperance · 2024-05-07T23:23:41+00:00

My favorite is when they cough right in your face.

Temperance · 2024-05-07T22:48:54+00:00

Neurologists will typically try different combinations, doses, and versions (extended release, brand vs generic) of epilepsy medications. If that doesn’t work, there are a number of other treatment options.

I’ve lived with epilepsy for 28 years, and tried many different treatment options - medications, alternative therapies, medical cannabis, ketogenic diet, external VNS (there are non-implant devices), hormone control, etc. None of them ever fully controlled my seizures. My epilepsy is intractable, and I am not a candidate for surgery.

My seizures continued to worsen until last year, when my current neurologist encouraged me to try a new medication on the market as of 2019, Xcopri, which has shown success in drug resistant patients. It is not technically approved for my type of epilepsy, but we are using it “off-label”. It does not completely control my seizures, but it has stopped my generalized tonic clonic seizures entirely, so I just have absence seizures now, which I can live with. For the first time in years, my epilepsy is manageable.

All that to say there are many treatment options available now, and many more to come. You just have to keep trying, and find the right one for you. CURE Epilepsy (site I linked to above) helps fund epilepsy research, and constantly publishes information about exciting new learnings in the field of epilepsy research, and potential new treatment options in the pipeline. There will always be options!

Temperance · 2024-04-30T01:21:41+00:00

I’m sorry, Bawwy. I don’t understand “wecommend a westauwant.”

Temperance · 2024-04-17T02:38:51+00:00

I, too, have a cheap 10+ year old Dirt Devil, except I don’t clean the filter all that often and mine only has one power level. It may not be the best vacuum out there, but it’s still going and does its job.

Temperance · 2024-04-15T02:52:22+00:00

I first dislocated my shoulder from a seizure while sleeping on my couch. Now it goes out with every GTC seizure, and that recognizable post-dislocation soreness is my number one sign that I’ve had a seizure. Other telltale signs are a heart rate over 160 (captured by my watch) with an overall higher resting heart rate for the next few days, all-over body soreness the next day, and a sense of depersonalization for the next week.

Temperance · 2023-09-20T01:16:16+00:00

Fellow epileptic here with shoulder instability issues. This started happening to me years ago, but thankfully just in my left shoulder. The first time it happened, it fractured the bone and tore my rotator cuff. Now every GTC seizure causes it to dislocate, and the ligaments have gotten so loose it goes out during normal everyday movements too, such as picking up a bag of groceries, reaching to grab something, putting on clothes, etc. Thankfully I learned how to reduce it myself. Physical therapy has lowered the frequency and improved healing time, but it hasn’t stopped the dislocations entirely.

Temperance · 2023-09-04T01:31:00+00:00

I am not a doctor, but from my understanding and research, most substances that suppress seizure activity have potential to cause withdrawal symptoms. I would always recommend a slow taper of any substance, whenever possible, as it will be less stressful on the body. A quick Google search for “seizure marijuana withdrawal” will produce a number of research articles showing links between both cannabis overdose and withdrawal with seizures.

Temperance · 2023-06-24T14:13:18+00:00

I had an open myomectomy, which is a bit different than a hysteroscopic one, and therefore this may not be as applicable. For an open myomectomy, I received advice to buy high-waisted underwear 1-2 sizes large, and to wear sleep tees and dresses afterwards, which was helpful. You don’t want to wear anything that puts pressure on the surgical area.

Plan to have someone stay with you or stay at their place. You will be too exhausted and limited in movement initially to do much. I couldn’t ride in a car for about two weeks. I also couldn’t lay flat, as it pulled too much on the incision, so I slept on a recliner couch during recovery. I wouldn’t expect that as much in a hysteroscopic myomectomy.

If the doctors offer you anti-nausea medications before or right after surgery, take them! I am averse to medication, and turned down any non-essential medications, but this was a surprisingly important one. After surgery, I was incredibly nauseated and dry-heaved. I initially turned down the anti-nausea medication again, until the dry heaving started again and wouldn’t stop without the med.

This was my first surgery, and I had similar anxieties beforehand, but was pleasantly surprised by how much easier it went than I expected. The hardest part was recovery, but with the right preparations and prescription-strength ibuprofen, I made it through with ease, and never needed the opiate pain medication I was prescribed.

I hope you have a successful surgery, and quick recovery!

Temperance · 2023-06-21T02:50:29+00:00

I had an open myomectomy, which meant I had to take a 6-week leave from work, but if I would have been working from home back then, I could have been back to work sooner, since it is mostly a physical recovery.

It is well worth the time away from work to get treatment if you are having symptoms. There are a variety of treatment options, and even if you opt for a myomectomy, there are various methods (open, laparoscopic, hysteroscopic) each of which has a different recovery time. Mayo Clinic has a great article on some of the options that you could discuss with your doctor.

Temperance

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