Meds not working

[missamber]

Hey everyone, I haven't posted for a while. Iv'e had an increase in seizures over the past 2 months and saw my GP about it, she informed my nurologist and have suggested another med. The thing is I don't seem to react well to anti seizure medication. I have tried 3 differnt ones already and the last one I had a horrible allergic reaction to. I was itching all over my body till I bled, swelling face and lips, nausea, headache, memory loss ect. I want to ask her about CBD oil but dont feel very confident. The other anti seizure meds either didnt work or made my seizures worse. They feel so toxic for my mind and body. I have to see my GP next week, what should I do? I have simple partial focal seziures and have a had 2 complex partial seizures. The side effects from them are often really bad if they are big, sometimes Im fine afterwards. Also had a few episodes of new seizures where I dont convulse at all but go either limp or tense in the body,cant communicate at all, see flashing lights, intense fear or sadness, weird energy rushing through my body and cant move...thought I was having a stroke, epsiodes last around anywhere from 5 to 15 mins. Anyone experince anything like that?

 

[Nakamova]

If you're allergic to conventional anti-seizure meds and/or your seizures don't respond well to them, then considering CBD oil seems like a good idea. Your neuro should be open to at least discussing the option, and you should feel confident in bringing it up.

I dont convulse at all but go either limp or tense in the body,cant communicate at all, see flashing lights, intense fear or sadness, weird energy rushing through my body and cant move

Those sound like fairly typical partial seizure symptoms, which can incoude all sorts of sensory disturbances and weird sensations. See: http://www.healthline.com/health/partial-focal-seizure#symptoms4

I hope you get some relief soon.

 

[Highlander]

Hey everyone, I haven't posted for a while. Iv'e had an increase in seizures over the past 2 months and saw my GP about it, she informed my nurologist and have suggested another med. The thing is I don't seem to react well to anti seizure medication. I have tried 3 differnt ones already and the last one I had a horrible allergic reaction to. I was itching all over my body till I bled, swelling face and lips, nausea, headache, memory loss ect. I want to ask her about CBD oil but dont feel very confident. The other anti seizure meds either didnt work or made my seizures worse. They feel so toxic for my mind and body. I have to see my GP next week, what should I do? I have simple partial focal seziures and have a had 2 complex partial seizures. The side effects from them are often really bad if they are big, sometimes Im fine afterwards. Also had a few episodes of new seizures where I dont convulse at all but go either limp or tense in the body,cant communicate at all, see flashing lights, intense fear or sadness, weird energy rushing through my body and cant move...thought I was having a stroke, epsiodes last around anywhere from 5 to 15 mins. Anyone experince anything like that?

Hi, Sorry you don't seem to be having much luck with antiepileptics.
I'm sorry you had such a rotten adverse drug reaction, aromatic antiepileptics such as phenytoin, phenobarbital (phenobarbitone) and carbamazepine are the most frequently involved drugs for cutaneous ADRs such as the one you describe. Lamotrigine is also another contender especially if it is titrated too quickly.

I know it can get disheartening but I have seen graphs that show that your odds of success should increase as you try your 4th or 5th antiepileptic drug.
If this sounds too much of a bind there are always drug combinations and rational polytherapy where doctors look at getting the drugs to work more synergistically together by combining certain modes of action - valproate and lamotrigine is a well-proven combo.

If you have tried 3 drugs - and granted I don't know what they are there are still a lot out there. I appreciate that the lack of success with pharmaceuticals so far, especially with the reaction you had, must make options like CBD oil look like far less toxic. However, just because it comes from something natural doesn't mean it doesn't have side effects - with regard to Sodium Valproate (Epilim, Depakote) in 1592, Fabio Colonna, in his botanical classic Phytobasanos, reported that taking powdered valerian root controlled his own epilepsy. Valerian preparations yield isovaleric acid, a substance analogous to valproic acid and likely to possess anticonvulsant properties, as isovaleramide does. In favorable circumstances, high valerian doses can be calculated to have sometimes provided potentially effective amounts of anticonvulsant substance for epilepsy patients. Pity they supposedly taste like yuk. It's chemically manipulated into salt form for the antiepileptic we know and lurve to aid absorption.
Anyway, cannabinoids -
Sorry, this is a bit TL;DR, I'd put in a link for you but I haven't been here long enough.
This is from a paper Ben Whalley is an author is on. He has been writing about epilepsy and the cannabinoids for a while. I asked about any info when the head of my course gave us a lecture on the cannabinoids and the endocannabinoid system and missed out epilepsy research. At least he emailed me stuff.

'There is a strong tendency to equate “cannabis as a natural therapy” with “cannabis as a safe therapy”. This a priori assumption—the naturalistic fallacy—is countered by many instances of toxic or deadly plants (e.g., amotoxins in mushrooms) and animals (e.g., tetrodotoxin in puffer fish). A more muted naturalistic view is that if side effects occur with cannabis, they would be less severe than those from drugs produced by the pharmaceutical industry. A recent Epilepsia survey of 776 individuals found that 98 % of the general public supported the use of medical marijuana for severe cases of epilepsy, compared with only 48 % of epileptologists. Similarly, the majority of the public and a minority of epileptologists thought that there was sufficient safety (96 % vs 34 %) and efficacy (95 % vs 28 %) data for medical marijuana use in severe epilepsy. This significant disparity in opinion between professionals and the lay public, possibly swayed by the appeal of natural remedies, emphasizes an increased need for further research and public education regarding medicinal cannabis and epilepsy.'

Here is the reference if you want to google the paper, it is all online. Sorry, can't do links yet.
Rosenberg, E., Tsien, R., Whalley, B. and Devinsky, O. (2015). Cannabinoids and Epilepsy. Neurotherapeutics, 12(4), pp.747-768.

This is from a pharmacological paper from this year, it is basically a review of available research and their findings. It is also behind a paywall. If you truly wan't 6 pages of pharmacology, happy to send it if I can.

'There is accumulating evidence that some cannabinoids have anticonvulsant properties in animal models of seizures and emerging evidence for efficacy in human epilepsies. Despite this empiric evidence, the mechanisms by which these compounds exert anti-seizure effects are poorly understood. The major cannabinoids have multiple targets
within the Central Nervous System and can modulate the activity of neurons, glia, and microglia and it is unknown which mechanism(s) are critical for therapeutic actions.

The pharmacokinetic properties of Δ9-THC, Δ9-THCA, Δ9-THCV, CBD, and CBDV also present unique challenges to use as therapeutic agents including low bioavailability (the fraction of an administered dose of unchanged drug that reaches the systemic circulation) and potentially erratic absorption in oral formulations, significant accumulation in adipose and other tissues, and interactions with certain other drugs ... Some of these problems may be overcome by novel delivery systems (oromucosal, transdermal) or through the synthesis of related compounds with optimized properties. However, the potential interactions with other antiepileptic drugs pose a particular problem for patients with treatment-resistant epilepsy for whom polypharmacy
is the norm.'

In trials for Epidolex, which was granted orphan drug status, there were side effects ranging from vomiting, fatigue, fever, drowsiness, and diarrhea. Eight patients in the group withdrew from the trial because of the severity of the side effects.

In the best-done study for CBD oil, and there aren't many good ones - most lack a decent sample size, length or placebo control; 79 percent of participants reported adverse events, including diarrhea and fatigue, but only 3 percent of them dropped out of the study. The adverse event rate is not small; according to a letter in the journal Lancet Neurology, it's higher than the side effect rate for other epilepsy drugs.

One thing I didn't appreciate was that some people in the studies were also on other antiepileptics and CBD oil is very good at blocking the liver enzymes that normally break down other drugs such as Clobazam and Valproate.
This drug interaction makes it impossible to say whether reduced seizure incidence seen in study participants was due to CBD by itself or whether it was simply the result of those other medications staying in the system for longer stretches.

Despite sounding all doom and gloomy, it is something I'm interested in and I do try to follow the research. It was suggested for a friend of mine by 2 neuros, but he has been on quite a few drugs and combos and had surgery.

Maybe worthwhile putting it to your doctor, I guess it depends on their attitude, but it isn't side effect free.

Hope you get your seizures sorted out some way or another.

Oooh long post!

 

[Porkette]

Hi missamber,

Just like you seizure meds never worked for me I broke out with rashes on 3 of them and I've tried over 10 different seizure meds. Then my Epileptologist did a DNA test on me and found out I was drug resistant to all seizure meds that are out on the market now so I started cbd and I am amazed at how it has reduced my seizures and the seizures which are complex partial, absence, and simple partial (aura) are not as severe as they were in the past. Before I started cbd I had 120 seizures in one yr. and last yr. I only had 65 seizures which is the lowest ever in my life even after having 2 brain surgeries.
I buy the cbd mouth spray at healthyhemp.com and squirt it in my mouth twice a day. It will make you sleepy until you get used to it but a 2 ounce bottle last 3-4 months for me. Also if you have back problems or headaches this works great. I wish you the best of luck and May God Bless You!

Sue

 

[valeriedl]

I have simple partial focal seziures and have a had 2 complex partial seizures. The side effects from them are often really bad if they are big, sometimes Im fine afterwards. Also had a few episodes of new seizures where I dont convulse at all but go either limp or tense in the body,cant communicate at all, see flashing lights, intense fear or sadness, weird energy rushing through my body and cant move...thought I was having a stroke, epsiodes last around anywhere from 5 to 15 mins. Anyone experince anything like that?

I experience many of these things during my seizures and they are partial seizures. I usually don't even know that I've had it unless there is someone there to see it happen. After the seizure I'm very tired and I might have a bad headache.

I don't know how many meds I tried when I was first diagnosed with epilepsy. I was either allergic to them, had horrible reactions from them or they didn't work. It took a few years before my neuro found the right combos and dosages to find out what worked best. I did get a VNS after 4 years which helps a lot and I've been able to get off some of the meds I was on or lower the dosages.

I had talked to my neuro about CBD and he wasn't too sure about trying it, this was when it first came out though. Since it's been out for a good while I'm going to bring it up again and see what he has to say. I know there are people on here who are using it and it's working good for them so you can probably get some information from them.

 

[Mari]

Hang in there Missamber. It took many tries before we realized that the only med I can successfully take is Lamictal. But being without benefits for years I was forced to do without them, and have just started them again. Hoping I did not have a seizure last night, as I have, with the neurologists consent, lowered my dose from 400mg./day to 300mg./day. Fingers crossed...smile.