Advice please

[Shorehampete]

I'm having a bit of a crisis. I've been diagnosed with epilepsy for 6 years now and have tried 6 different medications since diagnosis. The last one seemed to be working ok for the last 18 months but now my seizures have returned. I feel like I'm right back at the beginning with the frequency and severity of the seizures. I've now been told that the consultant wants to try yet another medication. I'm going to ask about what would happen if I were to stop all the medication and see what happens. Has anybody else suggested or tried this and did it help? I know the professionals will say you should never stop taking the meds but I seem to be getting all the side effects ( which aren't great ) and none of the benefits. Surely not taking the meds isn't going to be any worse than this.

[the_swimmer]

My experience was the same, pills did absolutely nothing and the side effects were awful, so I have been off of meds for 10-15 years now.My fits are small though, and don't put me or anyone else in any danger when I have them.

But if the pills don't, work why take them?

[Shorehampete in reply to the_swimmer]

Thanks for your reply. All my seizures are nocturnal and only happen a few times a year. I've realised stress and tiredness can cause a seizure so try to avoid these. My last few seizures seem to be linked to low sodium levels which are a know side affect of the medication I'm on which is why they want to change them.

I will bring this up at my appointment later.

Cheers

[Justmepound]

For me yes, and to cloud the issue with facts some details why. First thing though let me say I am sorry to hear that you are not thriving with your medication.I can of course only tell you of my experience with three different drugs.

Lamotrigini took away my ability to make current memory but did have me fit free whilst I took it.

I was unfortunately served up with an overdose of 5x my prescription 3x in 24 hours by the NHS following a faint where well meant folk got me a couple of weeks in hospital. This shattered my brain which already enjoyed Parkinson's as well as epilepsy.

On release I was moved on to carbamazapine 200mg once a day. I coped with the side effects much better and whilst I had lost about 20 years of memory I now form some current ones.

A nocturnal seizure got the dose doubled and I've just passed the One Year fit free landmark.

My conclusion for me is yes, the meds are working. I've got my driving licence back and without them I can't have it.

[Shorehampete]

Hi.Thanks for your reply. I'm sorry to hear what happened to you in hospital. That must have been awful for you.

I have since spoken to my epilepsy nurse and the plan is to replace the medication which caused my sodium levels to drop dangerously low but did stop the seizures with another medication from the same family that shouldn't affect my sodium.

My concern is after trying 7 other medications is this going to be any better?

Regards

[Mybraveface]

Hi, I'm sorry to hear of your troubles. Please allow me to share something which I hope you (and many others) may find of use. Please view my profile on this website for my full history if you wish. In 1989 after a brain operation I was diagnosed with epilepsy. After trying various medications carbamazepine was found best for daytime absences, but not for nocturnal seizures. Various other epilepsy meds were tried without succes, so I accepted a couple of nocturnal seizures 3 nights a week. In 1999 I had 9 seizures in one night, so my wife called 999. The registrar who responded asked if I'd ever tried Clobazam, not considered an epilepsy medication, but evidence from USA was suggesting it helped control nocturnal seizures. After 10 years of them I was willing to try anything, and sure enough after just 2 weeks or so the nocturnal seizures stopped completely!

The combination of carbamazepine and clobazam worked well for me until about 3 years ago when the increasing side-effects from carbamazepine was too much. I asked my GP if it would be possible to try a modern version of carbamazepine (it's been around since about 1950) instead of keep adding extra meds to combat side-effects. The neurology team advised Levitiracetam which I didn't tolerate well, then Brivaracetam. Over 2 years on these drugs I was in A&E 3 time due to absences seizures, anxiety/panic attacks, absence seizures, orthostatic hypotension and falls. I felt I must be on the wrong meds so did my own research, found a VERY useful video on YouTube which explains how most epilepsy medications work. With this information I quickly realised I had been put on the wrong type of medication. I have previously posted this link as a "MUST SEE VIDEO FOR ALL ON EPILEPSY MEDS" as it describes how they work in easily understandable ways. It is an hour long, but WELL WORTH THE TIME ! I actually found the information I needed within 15 minutes. I wrote to my neurology consultant and asked him to view the video, and prescribe me a modern sodium channel blocker drug which carbamazepine is, as neither Levitiracetam or Brivaracetam are that type. He agreed, and prescribed lacosamide earlier this year. After switching to lacosamide (along with the necessary clobazam) I am now back to my former self !

Please find the time to view this video;

healthunlocked.com/epilepsy...

I wish you all the very best, and hope you find this helpful ❤️ x

[Shorehampete]

Hi. Thanks for your reply.

I'm sorry to hear all the problems you have had over the years. It can be very difficult dealing with all the side effects and different medications and trying to stay positive.

Funnily enough I spoke to my epilepsy nurse last week and she has discussed my ongoing issues with the current medications and the consultant has suggested changing my meds from oxcarbazepine to lacosamide.

I'm still waiting for the prescription for these and I'm still not sure whether to take them but after reading your email that has really helped me with the decision.

Thanks again

[Glaistiarlyn]

Hey, Shorehampete!

Welcome to Prescription Roulette! It is a game most people with seizure disorders play under the 'guidance' of a licensed professional. It's sort of like craps or twenty-one in that meds can seem like luck of the draw because seizure disorders are so unique to each individual despite the diagnoses.

I also gained a myriad of side affects from 1972-2021 from all the combos and 'tweaking' of my meds. (I am allergic or sensitive to over 32 medications, mostly anti-convulsive, Bi-polar, anti-depressive.)

Bottom line: Everyone is different. You know your body better than anyone. Find a neurologist who is comfortable working with you, not use you as a science experiment.

There are a number of ways to decrease the stress on your body that induces seizures:

Meditation or prayer, music, low lights, tinted glasses, budget television and computer/cell/tablet screen time, a low key pet such as fish, a parrot, a cat or laid back breed of dog, visualization to music or verbal description, massage (check out YouTube for Bigan self massage and yoga), audiobooks, learn to play an instrument, journaling in a book-style journal, bee-keeping, gardening..... whatever gives your brain down-time that relieves stress other than sleep. Read labels for additives, preservatives, etc and switch to something else.

Review a Ketogenic Diet for Seizures (posted by the Epilepsy Foundation and other sites).

I am retired and happy. I no longer drive, but my life is full. Yes, I occasionally have small seizures (mine are focal -TLE, hence the difficulty for my neurologists with an "appropriate" diagnosis and treatment)), but I am healthier and no longer afraid.

No one can tell you what to do or give you a magic answer, sadly. Everyone's journey is different but we are here as support.

[Shorehampete in reply to Glaistiarlyn]

Hi.

Thank you for your reply.

I never realised before I was diagnosed with epilepsy that it's such a minefield with all the tablets available and all the different combinations you can have. I just assumed like most people you took a tablet and that was it.

However I have had a good chat with my neurologist and epilepsy nurse and I'm now going trying lacosamide which I have only been on for a week but I feel better than I have for a long time.

The plan is to faze out the other two medications over next two months and see what happens.

Fingers crossed this works if not it's back to the drawing board.

My neurologist is very understanding and helpful and admits she has been asking other colleagues for their opinion with my case and this seems to be the result.

Thanks for your advice regarding managing my stress and gardening and long dog walks do really help as does reading when I have a good book to read.

Thanks again. Shoreham Pete