I have been on Neurontin sonce nov 2016 for atypical facial pain. 4 weeks ago my neuro wanted to try triliptal. I started triliptal while weaning off neurontin…All hell startred…i started anxiety attacks skaking not eating and facial burning…all thia time my family dr and neuro said it was impossible. 2 WEEKS ago i ended up in the Er…Stopped trilital (300mg tid)cold turkey and restarted my neurotin dosage…
Anxiety is down but still having restless legs, musle pain and nuesea and some anxiety…
Im 2 weeks of trilital after being on 150mg for 2 weeks and back on my regular dose of neurontin…
Why am I still having these symtoms?
Can anyone relate? Today my arm and leg muscles were fatugued and burning…and restless…and my appetite still hasnt returned…
Sadly that is not an unknown reaction with both on board. but a very effective combination if very slowly titrated. I can’t imagine neither your Doc or Pharmacist questioned it…
Quiting triliptal cold turkey especially at the dose you were at would certainly have a BIG effect. Did you do it on your own? In any event you will straighten out. It may take a few weeks. The half life of these meds is as long as 6 weeks.
They said on the triliptal i should have no side effects…they told me to quit…i was on the lowest dose…
Neurontin i was tapering 300mg a week i never got below that…
Accoutding to the neuro and family doc , there should be litle or no withdrawel…
By both i mean my family dr and neuro
Thank You moderators.
You have been doing this for a while and know much more than doctors.
At least the ones I have been to.
I wish I could hold your hands in the doctor appointments and you guys do the talking about the meds.
Do you mean that withdrawel will last longer and be slightly differenr because the 2 meds combined changes the dynamic so im still going through withdrawel despite reinstafing neurontin
I have a lot of experience with both Trileptal and Neurontin, individually and in combination. The doses that you mention are quite low based on my experience and what Mayo puts me on during relapse periods. When remission seems to be present, Mayo’s approach is to wean me off very slowly, weeks or months depending on the dose level, to ensure no issues. These are powerful drugs. I experienced 16 side-effects when I was on high doses of Trileptal and Neurontin together. Once med-free, it takes my body a while to feel normal again. In other words, some of the side-effects take a while to fully leave my body… my opinion is that anxiety issues are caused more by worrying when and where the next attack might come versus med side effects…but I’m not a doctor.
I’ll use this to pitch the book “Striking Back”. My Mpls and Mayo neurologists know that I credit it for saving my quality of life…and maybe my life. It was there that I learned so much about TN and meds and was able to make med recommendations to my neurologists that worked better based on my type-1 and type-2 attacks, frequency, duration, etc. I keep a daily pain log, analyze the results and adjust when I take my pills during the day, all while maintaining the daily dose prescribed by my neurolists. They are fully on board with it. They prescribe lower dose pills to allow me to do this. My desperation led to a good result with two periods of long-term, painfree, med-free remissions over 5 years. Educate yourself and push your neurologists to think out of the standard-approach box. Every pain-free day is amazing. Stay positive and don’t let it beat you!
Every time I go to the neurologist, he asks me, “Are you depressed?” I always say no, I’m upset, ok I’m mad. You see, in my profession, I’ve read thousands of patient health records, and I’ve seen it over and over. If doctors do not have a treatment that works for what ails you, and they find out you are depressed, many times they will treat depression and consider your ailment a conversion disorder. So I didn’t want to give my neurologist that option, I need real medical treatment for my physical TN. He did however refer me to psychiatrist for evaluation. Turns out, I am not clinically depressed, but off the scale for anxiety, they named it PTSD. The anxiety people get with TN makes us a little crazy, but that came after the TN. Also it is notable that I have not been prescribed anti anxiety meds because–get this–they may be addictive. Oh Lord, don’t give this girl anything that is proven to help her with this overwhelming anxiety or pain, because she might become addicted! Its laughable really. I have daily pain that is the equivalent of childbirth or a finger dismemberment, so I’ve read, and actually named the suicide disease. So I feel that politics and fear get in the way of good science in the treatment of TN patients. I recently read a book called “No, I’m Not
Depressed” (I recommend, its on Kindle). The author gives a good description of the psychobabble she was put through, when really she had a concussive brain injury. The psychologists wouldn’t allow her to say her symptoms, she was made to call them feelings, and it totally undermined her belief system and trusting herself. So I just want to say, beware that while you are taking these powerful, mind altering drugs, to ease your pain, its very normal to have psychological problem, and they can mess up your thinking, awareness, emotions, nerve conduction, etc. I urge my friends that have TN to be aware of this rabbit hole. We all have to decide what we are willing to put up with in exchange for a little relief of pain. You are your best advocate, decision maker, and please do not let a doctor put a diagnosis on your file that may impede real medical treatment for your TN Pain. Suffering through TN pain is a dangerous road to travel. Discuss this with your neurologist. Insist that he puts on your medical record any mental problems are secondary to medication or primary TN. Hope this helps someone.
And yet “medical treatment” ie meds for chemical depression is the single most effective means of dealing with chronic pain. Psychobabble helps no one. Probably thw single BIGGEST problem is few patients (or individuals) understand the clear difference between Neurology, Psychiatry, and Psychology. Psychology has NOTHING to do with anything and is essentially voodoo.
Psychiatry on the other hand is actually with rare exceptions Psychopharmacology. They deal with brain chemistry. FWIW brain chemistry is the source of ALL physical pain. Located in the “brain” are what are called opiod receptors Opioid receptors are distributed widely in the brain, and are found in the spinal cord and digestive tract. These have NOTHING to do with opiates - pain drugs, despite sounding similar and this leads to a lot of confusion.
The endogenous opioids are dynorphins, enkephalins, endorphins, endomorphins and nociceptin. The opioid receptors are ~40% identical to somatostatin receptors (SSTRs) for what it is worth. The most important one for us are the endorphins. Remember I said the receptors are found in the digestive tract. In fact the majority (up to 80%) are in the digestive track. The receptors “recieve” the endogenous opioids including those who do the best job of managing pain.
If something is haywire it can be frequently adjusted. A GOOD Psychopharmacology expert working with a neurologist can make the chemical changes. SADLY due to some strong bias not only previously on this site but many other sites the minute Psychopharmacology, psychiatry, antidepressants (which really only stimulate the endorphin system to not only control pain but relieve symptoms of depression, PTSD etc) comes up, It is immediately dismissed by by not only folks who should know better but by patients as well.
For some reason lay people are far more worried about stigma than what medical professionals see. The pain is real. Except for the psychologists practicing voodoo, NO ONE doubts it. Few outside the medical field have any understanding of the new methods and classifications of somaticism let alone treatment. They would sooner picket the DEA and FDA. Meantime folks who could be helped aren’t. This why some familiar faces are missing around here from time to time. This isn’t a political issue, its a change in the practice of medicine adapting more multidisciplinary methods. A few of the old timers in and out of the profession simply can’t get the idea change is most often progress,
Now I suffer from extreme pain from another source, TN episodes are the least of it, but I have tell you I could give two hoots what medical specialty or class of medications are used to control it. Hell if painting myself purple, dancing under afull moon naked while licking frog scum had any evidence base behind it for controlling my neurosarcoid arthritis, I’d do it in a heart beat. An antidepressant/antisizure combination is no problem (and yeas I use all)
Hi
There are some people that the anti-depressants work for and some people like me have a hard time.my pain management guys wanted me on anti-depressants years ago for my back.Now that I am in so much pain i will take anything-most especially licking that toad-and I have found out how awful they make me feel and the encouragement to go to higher and higher doses.
It took a year to even try the tegretol and trileptal because they were in the anti-depressant mode.
One thing that I would caution,or at least make people aware of,is that at least in Canada, your psychiatric or psychologist will be compelled to provide in court cases.as an example-my son was seriously injured while riding his bike.During the legal court case to try and get him the help he needs now the lawyers had him sign papers releasing medical records.These records included confidential notes made by the psychiatrist(keep in mind he saw a psychiatrist for reasons that had nothing to do with getting hit by a car ten years later)and those records were read out in front of me.The idea was to humiliate us so badly we would drop the case.
I would suggest very strongly that anyone who chooses to see a psychiatrist that they request that the doctor take very minimal notes.You never know if you will get hit by a bus tomorrow and you will putting your family in an awkward position of hearing your personal details.
That’s too bad. In the US “notes” can’t be released under ANY circumstances ever. (well by court order after death)
However that’s a completely separate issue from psychopharmacology as it does not contain (again this is in the USA ANY mental health code) as what consult work they do is under the primary axis ICD-10-CM code Which is used internationally. for TN that diagnoses code would b G50.0 It would become G50.073 for Cranial and peripheral nerve disorders with mcc and G50.074 for Cranial and peripheral nerve disorders without mcc.
mcc = major complication or comorbidity
As I said the stigma is with patients NOT the medicos. we need to get past it.
When we get in enough pain ,we get past that.I decided to take one of the 10mg imiprimime tablets this morning.Taking 20mg at night was causing the back of my head to go numb at night.Weird feeling,that, and it has happened twice on this drug.So the 10mg did nothing but make me feel nauseous and I took a gravol and that made me sleepy.I am now still nauseous and wearing those anti-nausea bracelets(and needing to do a weeks worth of dishes).If I knew the drug would work- but I need to give it more time-I would be less resistant to taking it.And it is not stopping me from needing to go pee at night. I cannot believe my son was on this for his bladder when he was like 4 years old.
It just would be nice if they could figure out why these drugs work.They presume they work a certain way-but no one seems to know.
Thanks again for your response.It really makes things so much better to have moderators that are active and hands on and knowledgeable and kind.
@ellen5 At least there is a reasonable chance of them working.
BTW that dancing naked painted purple thing… The frog got away before a second lick, although I am pretty certain it wasn’t going to work any way. My big concern is that although I was 20 miles back in the Bob Marshall Wilderness, and certain I was alone, that young couple that came up from nowhere may never recover from what they saw that night…
We do what have to do and your right sooner or later pride is unimportant
Well if you point me in the direction of the frog-away I will go.
Maybe I could find one in a pet store.Sneak in a lick.
You probably were the guardian angel of that couple.imagine -the guy telling the girl-we just need to hike this far-nobody ever goes there,just stupid scientists looking at the frogs.And there you were-ruining(?) their plans.
But you made me smile.Thank you.