I remember a funny conversation with the doctor when first selecting an anti-epileptic (AE) for me to take ....
I did a bit of my own research because I wanted to avoid all gabapentin analogs (which pregabalin is - pregabalin was one thing tried initially and was just awful - made me so irritated and upset I felt on edge of meltdown literally all the time, and for absolutely no reason) and ideally all AE meds that were known/thought to work via the same mechanism (GABA).
In researching had stumbled across some case studies suggesting valproic acid (and divalproex...essentially the same medication once metabolized) could be used and were also potentially useful for autistic people (and people with developmental disabilities of other kinds ... my doctor found the latter ones, I had excluded them as not relevent enough) with co-occuring ADHD who had "challenging behavior" and meltdowns not adequately controlled by ADHD meds, antipsychotics, anxiolytics, antidepressants etc.
Interestingly, when I asked about trying valproic acid my doctor raised the issue of how valproic acid use in pregnancy is thought to cause (or increase the risk of) autism in the child....ie saying "what if this actually makes your autism worse?"
I thought that concern was sort of ridiculous and now think even more that it's ridiculous because:
Today it occured to me:
WHY DID NOBODY IN THE MATERIALS DOCTOR SHOWED ME (OR THAT I PERSONALLY FOUND) CONSIDER THAT EPILEPSY AND AUTISM FREQUENTLY CO-OCCUR AND ARE THOUGHT TO HAVE A GENETIC/EPIGENETIC LINK??
MEANING:
COULDN'T THE HIGHER FREQUENCY OF HAVING AN AUTISTIC CHILD SEEN IN MOTHERS (OR THE MINORITY OF FATHERS/NON-BINARY GENDERED "PARENTS" WITH THE REPRODUCTIVE ORGANS REQUIRED TO BEAR CHILDREN WHO CHOOSE TO USE THOSE ORGANS FOR THAT PURPOSE) WHO TAKE VALPROIC ACID (AND IT TURNS OUT OTHER AEs ALSO -- LIKELY MOSTLY FOR EPILEPSY, AS I THINK OTHER CLASSES OF MEDS COULD BE USED AT LEAST TEMPORARILY FOR MOOD DISORDER OR MIGRAINES IN PREGNANCY FOR MANY) BE ATTRIBUTABLE SIMPLY TO THE FACT THAT EPILEPTICS ARE MORE LIKELY TO HAVE AUTISM THEMSELVES AND MORE LIKELY TO HAVE AUTISTIC CHILDREN REGARDLESS OF MEDICATION STATUS????
WHY ARE SUCH OBVIOUS ALTERNATIVE EXPLANATIONS FOR PROPOSED CAUSES OF AUTISM SO OFTEN NOT EVEN CONSIDERED (OR NOT USUALLY MENTIONED IF THEY ARE CONSIDERED)....? (I SAW ZERO MENTIONS OF THIS ALTERNATIVE EXPLANATION MYSELF - ALTHOUGH IN FAIRNESS DID NOT DO EXHAUSTIVE RESEARCH; WAS TO HUMOR DOCTOR)
Please add your thoughts/discuss.
Was not for bipolar/mood things nor epilepsy.
Don't have bipolar.
Dont have epilepsy
Supposed to be for 3 things to minimize polypharmacy.
1. Neuropathic pain (post-herpetic neuralgia that just spiralled out of control into a strange suicide-worthy centralized neuropathic pain syndrome involving my entire body ...seems to be gone as of last time I stopped taking them for a short time)
2. Severe chronic migraines I've had since childhood.
3. This was a fingers-crossed treatment item: meltdowns and possible-albeit-unliky adjunct ADHD treatment. (Never worked for this; I added this, was not doctors idea -- and the interesting conversation we had stemmed from this "would be nice if it helped this also" non-priority treatment goal influencing specific medication selection)
(4) Unanticipated fourth things treated (as in they completely disappeared and have not ever come back unless I stopped the medication) that I conceptually group together:
4.1 What I have only ever been able to call "twitchy things" once the dose was high enough ....
... which originally were triggered by movement but had dramatically worsened and become chronic, needing no movement-trigger to happen, around same time as neuropathic pain but before neuropathic pain became extreme and suicide-worthy; Meaning, started I think after the 1st of 2 bouts of shingles occuring </=3 months apart -- got so bad I could do virtually nothing with my hands anymore because all movement triggered the "twitchy things"; stopped using knives for food prep or anything else; shaving my face with a razor was suddenly impossible and dangerous....
4.2 Not as noticeably until in retrospect (because they happened less often) some strange nearly-lifelong involuntary movement things I had never mentioned to anyone (mostly because i never worried about them and had no reason to mention them to anyone; they were annoying and curious, but not disabling or painful....and frankly they were so sudden and brief I actually could never recall what happened so descriptions were not just difficult like with most things, but truly impossible when others occasionally witnessed them and asked me "what was that?").
Migraines and 4.1 and 4.2 all came back worse than ever when stopping anti-epileptics once after less than a week.
Don't have bipolar.
Dont have epilepsy
(or...if I'm in denial and have some weird variant that does not involve obvious seizures that is fine and is likely so mild it's benign/not-serious; i don't drive for other reasons nor do anything where it would matter...only reason am no longer 100% certain I don't have it is (1)my family is full of epilepsy - every generation on one side has multiple people with epilepsy - and; (2) wierd things happen in my sleep when I stop taking anti-epileptics that theoretically might be signs of seizures..but I seriously seriously doubt it.)
Supposed to be for 3 things to minimize polypharmacy.
1. Neuropathic pain (post-herpetic neuralgia that just spiralled out of control into a strange suicide-worthy centralized neuropathic pain syndrome involving my entire body ...seems to be gone as of last time I stopped taking them for a short time)
2. Severe chronic migraines I've had since childhood.
3. This was a fingers-crossed treatment item: meltdowns and possible-albeit-unliky adjunct ADHD treatment. (Never worked for this; I added this, was not doctors idea -- and the interesting conversation we had stemmed from this "would be nice if it helped this also" non-priority treatment goal influencing specific medication selection)
(4) Unanticipated fourth things treated (as in they completely disappeared and have not ever come back unless I stopped the medication) that I conceptually group together:
4.1 What I have only ever been able to call "twitchy things" once the dose was high enough ....
doctor witnessed at their worst and wanted to send me to a neurologist, had no idea what it was ... referral never happened because of my needing support I do not have to avoid disasters and communicate things to unfamiliar healthcare people, and I suspect because so many of his attempts to refer me to specialists had been rejected by the clinics and physicians involved for no clear reason or what seemed like weak excuses...suspect this was esrly stages of him wanting to give up, perhaps because he felt helpless and doctors in general seem bad at tolerating helplessness...last rejected referral he told me about he seemed both embarrassed and disheartned; another doctor at his clinic whom I had seen once called me out of the blue to ask my permission to attempt to persuade my doctor to try again after that referral was rejected, because he was so concerned about more bone damage from the inflammatory arthritis he was 100% convinced I had based on test results of seriously abnormal synovial fluid, x-rays showing damage, and blood tests...took 4 attempts to get the referral accepted at all and it was strangely redirected away from rheumatology but at least I saw someone with some rheumatology knowledge beyond GP/family doctor standard
4.2 Not as noticeably until in retrospect (because they happened less often) some strange nearly-lifelong involuntary movement things I had never mentioned to anyone (mostly because i never worried about them and had no reason to mention them to anyone; they were annoying and curious, but not disabling or painful....and frankly they were so sudden and brief I actually could never recall what happened so descriptions were not just difficult like with most things, but truly impossible when others occasionally witnessed them and asked me "what was that?").
Migraines and 4.1 and 4.2 all came back worse than ever when stopping anti-epileptics once after less than a week.
I did a bit of my own research because I wanted to avoid all gabapentin analogs (which pregabalin is - pregabalin was one thing tried initially and was just awful - made me so irritated and upset I felt on edge of meltdown literally all the time, and for absolutely no reason) and ideally all AE meds that were known/thought to work via the same mechanism (GABA).
In researching had stumbled across some case studies suggesting valproic acid (and divalproex...essentially the same medication once metabolized) could be used and were also potentially useful for autistic people (and people with developmental disabilities of other kinds ... my doctor found the latter ones, I had excluded them as not relevent enough) with co-occuring ADHD who had "challenging behavior" and meltdowns not adequately controlled by ADHD meds, antipsychotics, anxiolytics, antidepressants etc.
Eventually my ADHD meds were just increased beyond normal max so there was no unmedicated time during waking hours and that is the only thing that has helped with meltdowns snd "challenging behaviour"....has also fixed insomnia....a little too well, going to the edge of "narcoleptic zombie" territory.
....And in case anyone wonders I don't take valproic acid anymore -- made me gain like 50 lbs and I insisted on switching to to a different AE, and I lost all that weight without trying to in approx the same time I had gained it and have had no similar issues on any other AEs
....And in case anyone wonders I don't take valproic acid anymore -- made me gain like 50 lbs and I insisted on switching to to a different AE, and I lost all that weight without trying to in approx the same time I had gained it and have had no similar issues on any other AEs
Interestingly, when I asked about trying valproic acid my doctor raised the issue of how valproic acid use in pregnancy is thought to cause (or increase the risk of) autism in the child....ie saying "what if this actually makes your autism worse?"
I thought that concern was sort of ridiculous and now think even more that it's ridiculous because:
Today it occured to me:
WHY DID NOBODY IN THE MATERIALS DOCTOR SHOWED ME (OR THAT I PERSONALLY FOUND) CONSIDER THAT EPILEPSY AND AUTISM FREQUENTLY CO-OCCUR AND ARE THOUGHT TO HAVE A GENETIC/EPIGENETIC LINK??
MEANING:
COULDN'T THE HIGHER FREQUENCY OF HAVING AN AUTISTIC CHILD SEEN IN MOTHERS (OR THE MINORITY OF FATHERS/NON-BINARY GENDERED "PARENTS" WITH THE REPRODUCTIVE ORGANS REQUIRED TO BEAR CHILDREN WHO CHOOSE TO USE THOSE ORGANS FOR THAT PURPOSE) WHO TAKE VALPROIC ACID (AND IT TURNS OUT OTHER AEs ALSO -- LIKELY MOSTLY FOR EPILEPSY, AS I THINK OTHER CLASSES OF MEDS COULD BE USED AT LEAST TEMPORARILY FOR MOOD DISORDER OR MIGRAINES IN PREGNANCY FOR MANY) BE ATTRIBUTABLE SIMPLY TO THE FACT THAT EPILEPTICS ARE MORE LIKELY TO HAVE AUTISM THEMSELVES AND MORE LIKELY TO HAVE AUTISTIC CHILDREN REGARDLESS OF MEDICATION STATUS????
WHY ARE SUCH OBVIOUS ALTERNATIVE EXPLANATIONS FOR PROPOSED CAUSES OF AUTISM SO OFTEN NOT EVEN CONSIDERED (OR NOT USUALLY MENTIONED IF THEY ARE CONSIDERED)....? (I SAW ZERO MENTIONS OF THIS ALTERNATIVE EXPLANATION MYSELF - ALTHOUGH IN FAIRNESS DID NOT DO EXHAUSTIVE RESEARCH; WAS TO HUMOR DOCTOR)
Please add your thoughts/discuss.
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