My 11 yr old has been prescribed Gabapentin for pain relief until we can get to see a neurologist (which might take months). She starts with 300mg once a day for a week, gradually building up to 900mg (3 tablets a day) over a month.
However, I’ve been reading about the side effects and am really worried. My mother’s husband took 900mg of Gabapentin and became really uncharacteristically aggressive, so had to come off them.
Very torn between trying to help my daughter with the pain but not wanting to see her afflicted with mood/behaviour changes.
Has anyone been prescribed this for their child and were there any side effects? Thank you so much
I haven’t a child that has been prescibed gaba drugs, but as a parent, your right to question them, as I would if prescribed them for any of my kids.
Prior to the below I might add I hate pharma drugs 99% of the time so a little biased.
You don’t state in this post what pain gaba is meant to be relieving, relevant, I’m unsure.
Interestingly the Daily Mail has highlighted these drugs in a very recent article, link below.
By my understanding they only reduce pain in 20% of folk prescribed them, and bearing in mind the side effects, see below, I feel your right to question the use especially prior to a neuro appointment. |Do not discontinue treatment without medical supervision.
They are pushing gabapentin for everything.
For me,I started with hot flashes and thought gabapentin was the leeast of the evils(all the natural stuff was not working and I worked in electronics and could easily be electrocuted if I was too tired)The back pain-they were surprised I was on gabapentin,and then this facial pain.
They just keep upping the dose.
I am able to go up and down on it.
my sister’s dog was on it and my cat is on it.
If that was my kid I would cough up some bucks to take them to the best naturopath I could find,\Failing that-I don’t know.
Horrid situation.
I wish you wellness
I’ve worked in a pharmacy for 15 years and have dealt personally with chronic pain (migraine/ATN) for 30 years. I am a huge fan and believer in medications! That being said you should question everything all the time. I know we all want to believe our doctor is good but keep in mind someone had to be last in the medical class.
My pharmacy is one of the largest home delivery pharma in the USA, right now I process medication prior auths and see an average of 50 different prescriptions a day. I have noticed a trend of doctors not starting with the lowest dose and working up slowly to the therapeutic level that works for individual patients, they seem to be jumping right into the deep end, so to speak.
Take gabapentin. It used to be prescribed 100mg once a day for two weeks increasing by 100mg every two weeks until pain relief began. But within the past year or so it started being prescribed 300mg three times a day immediately. I don’t know why. Maybe the average therapeutic dose is 900mg a day. But how do you know you’re average?
I take gabapentin myself. Started at 100mg once a day and have ended up finding excellent relief taking 100mg in the morning and 200mg at night. I recently cut back to 100mg twice a day with no change in pain control.
A friend was prescribed 300mg three times a day, I told her all of this and she decided to start with 100mg once a day. She has since stabilized on 300mg at night. Not 300mg three times a day as prescribed.
My advice to everyone all the time is to start with the lowest available dose and build up slowly — and this goes for any and all meds. You simply don’t know how you will react to a med and neither does your doctor so go slow. I firmly believe in using meds but I also believe in using the lowest possible dose.
I would tell you to start your daughter with 100mg and increase gradually.
Second thought for you – what’s the Dx? or approximate Dx? Gabapentin has very specific and very limited uses. I realize the GP wants to help but since the issues is being referred on why is the GP providing care? Shouldn’t that be left to the specialist?
Why would it take so long to see the specialist? Are you not in the USA?
Thanks everyone for the advice. We are in the UK so healthcare works very differently here to the US.
Gabapentin was prescribed yesterday by the consultant paediatrician at our local hospital for suspected geniculate neuralgia. It’s a stop gap until she has an official diagnosis from a neurologist and can be given more targeted medication. She has been in so much pain that I had to push to get the appointment yesterday - the first objective is to get her out of pain, the second to get a more specific diagnosis.
I like the idea of trying a lower dose first. The drs advised 300mg to begin with so she starts to build up tolerance of the medicine to try and avoid side effects as much as possible, but maybe I start her on 100mg?
She was given pills yesterday but couldn’t swallow them so I need to go back and get a liquid prescription - maybe it was good to have that time just to pause and think about what we’re doing.
I am going to look for a private neurologist today to see if she can see someone sooner even if we have to pay for that consultation.
I do believe in medication but also know that doctors here tend to hand medicine out like sweeties even before a diagnosis. Because she is so young I am worried about any long-term effects - but we’re caught between a rock and a hard place. The choices are at the moment - leave her in excruciating pain, or treat her with a medicine that has a long list of possible horrible side effects.
Thank you again for your advice. Thank goodness this forum exists!
may I ask - did you find you had the sleepiness even when starting on a lower dose of Gabapentin? And how long did it take when you first started on Gaba to get relief from your pain?
I’m trying to remember if it made me sleepy at 100mg. I don’t recall drowsiness with it, but, per my nuero I started 100mg at bed time, so any drowsiness would have been just part of going to bed. I did that for two weeks then added 100mg in the morning. When I went to 300mg a day it was 200mg at bed time and 100mg in the morning. Any drowsiness helped me sleep – which I have some limited problems with because I shattered my left shoulder, had it reconstructed, and have lymph edema in that arm. I also have migraines, which interfer with my sleep pattern so drowsiness at bed time was a very welcomed side effect.
I had an ATN flare up about 18 months ago and upped the dose to taking 200mg twice a day, that about knocked me out cold, after 10 or 12 days I hadn’t even started adjusting and was sleeping 15-20 hours a day so I went back to 300mg a day. At that dose I went back to my normal sleep pattern of 6-8 hours a day.
Now, my disclaimer is that I react very strongly to medication, be it negative or positive, so it’s hard to use me as a good example (or a warning, as the case may be!).
I would say start the med at either dinner or bed time – I say dinner time incase drowsiness is an issue, better to be sleepy in the eve than unable to roust your daughter for school in the morning. I know she’s in pain and I know you both want it to stop but I stand by the idea of starting at 100mg and working up from there about every two weeks, that will give you a better handle on what’s really working.
I did a quick search on geniculate neuralgia (I tell you, I don’t know how I lived before google!) and the treatments listed everywhere appear to be Tegretol (Carbamazepine) or Trileptal (Oxcarbazepine) as the top two, followed by Gabapentin with the disclaimer it “may work for some.” Which makes me think it’s not all that successful with geniculate neuralgia. As ellen mentioned, they seem to be dispensing gabapentin for everything under the sun lately…it may not be the option you want at this point since there’s not an official Dx to work with yet. But of course, I’m not a doctor, this is all just my opinion and semi-informed info from research.
How long until I had relief? I would say it started feeling something within the first week and had 90% relief within 3 weeks, at at the 300mg mark I was doing really well.
I take gabapentin for the pain of nerves being compressed by lymph edema and for ATN. I also take depakote for migraine and it definitely has helped with the ATN.
Thank you Azurelle. We’re getting the medicine in liquid form today so will be able to adjust the dose down quite easily. I must say your approach sits well with me - I am very cautious about medicine - and yes, as you say, who’s to say what the right dose is for an individual. I would rather start on a low dose and work up. Thank you.
Gabapentin is mentioned quite favourably in the book Striking Back but I am aware that was published in 2004 and back then Gabapentin was quite new as a prescribed medicine for neuraliga type pains.
It really is just a stop gap until we can get a specific diagnosis. When you child begs you to take the pain away it’s really very stressful so we are walking a fine line between being desperate to try anything and then feeling very cautious.
My fingers are crossed! Please post regular updates! Everyone here has been where you are and as you get more info people will have more tips and tricks.
One thing that I found helpful when ATN flared up in my ear was to wear a soft ear plug on that side, one of the sound deadening ones like what they wear in factories. In the USA I get them at any drug store/pharmacy.
I am also surprised that many people’s doctors prescribe relatively high doses at the beginning of treatment. My prescription started at 100 mg per day, to be increased by 100 mg per day every week until I experienced pain relief. As I recall, I only needed to get up to 200 mg per day before I got substantial relief from my TN symptoms.
Because I am also very sensitive to medication, I eventually reduced my dose back to 100 mg per day, taken at bedtime since I find gabapentin so sedating. Most of the time, even at this low dose, I am unaware that I even have a chronic pain disorder. Unfortunately, even at this low dose, I still experience side effects that are unpleasant. I don’t know how people manage to take the super high doses (2,000+ mg/day). I don’t think I’d be able to do anything other than sleep if I had to take that much gabapentin every day.
I look at it this way: Medication for pain relief isn’t the same as medication intended to actually cure something. I would NOT recommend altering doses of any medication that’s designed to kill a bacterial infection, for example. For pain relief, of course you should discuss options with your doctor but in the end the patient is the one grappling with both the pain and the side effects of the medication so the patient should be more in control over how much medication to take (notwithstanding opiods).
Yes, I have side effects from even 100 mg of gabapentin. I think that the same mechanism that calms the firing of nerves seems to have just dulled everything else in my body. My metabolism is slower. I get drowsy easily even if I have a full night’s sleep. I have experienced quite a bit of weight gain. And on and on.
The only reason I still take it is that even with all of those sides effects, it’s still preferable to all of the other medications I tried, not to mention NOT taking anything and having attacks of excruciating pain at unpredictable intervals throughout the day.
My daughter was unable to swallow the pills - so I haven’t given them to her and I think that’s a real blessing in disguise. The list of common side effects are horrible.
We are paying for a private consultation with a paediatric neurologist next week so hopefully that will put us on the right track.
From your own experience, is there anything I can go prepared with, what questions to ask etc? Thank you again
First don’t let the list of side effects scare you off. No o e gets all of them and you never know to what degree.
I will never come off gabapentin! Never! It stopped basically all my pain from two different chronic conditions. I have lymph edema from shoulder reconstruction and ATN. Once I got situated on gabapentin months and months of pain stopped. I could move my arm, I could chew my food, it was a miracle.
The dosing for chronic pain is much different than the med inserts advise, most of the meds used for nerve and facial pain are primary meds for things like seizures, bipolar, and depression, doses for those are typically much higher so side effects are somewhat different. You can’t discount a med because a list of side effects, you have to try it on yourself and see what happens. Rather like choosing between evils. Are you going to be in pain that interferes with daily life? Or are you going to have the occasional chill like I do but be 97% pain free?
You want to have a MRI done first to rule out scary things like tumors.
TMJ is worth discussion. Jaw joint issues can radiate into the ear.
Does herd ear ring? Causes of that need reviewed.
Start a pain journal to take to the appointment. How it hurts. When. How long. What was going on right before it started. What helped it. What made it worse.
Bullet point out a list of the history of what’s been going on and for how long. Any family history? Any past head trauma, no matter how long ago.
Should she have a hearing work up? See an ear specialist?
Have in depth discussions with your daughter, she’s the one living it, she needs to be able to express herself clearly and make informed decisions on what she’s willing to do to manage her pain. Kids can be a lot like injured baby birds, they’ll hide a chronic condition or down play it so you might not have completely accurate info. Is your daughter one who doesn’t like to worry you? If so she may need to speak to the doc with you and on her own.
Head trauma includes heading the ball in soccer…er, football
Question all meds and the dose. Typically meds for chronic conditions should be titrated, question if they are not.
What non- medication options are available? What lifestyle changers could help?
I am 98% against surgeries. You can always make it worse! At least with meds you can eventually reverse the worst, you can’t with surgery. And nerve conditions are known to get worse over time so if she does have nerve problems I again say start low and slow with meds, leave the “big guns” like surgery for when everything else has failed. Which may not ever happen anyway. She may be like Jeff and get pain control on the !lowest dose available.
Should she be checked for other diseases that are known to cause nerve damage? MS comes to mind.
I really hope it works out.
I think you guys are in England?
How do you get the private done?Out of country?
I am in Canada and I think the only way for me to get private done is to go to another country
For appointments I find those Flow Charts used for doing computer programming works.
List all the appointments your daughter has had and tiny summary in the boxes.And then have all the details in your hands on papers that you can quickly find more details.
Doctors seem to love this.
You could also add head injuries and or falls to the flow charts.
Pleas let us all know how it goes.
I totally agree , I have always started with less than they say and had good results . Then when it stops working you can increase your dose. For me gaba made my heart rate 90 at resting, dizziness and tired. It took the pain away though for awhile. I sure hope your child gets some relief .
