Hello hello my lovely lot.
I’ve come on to muse and mumble again, I’m not sure if I’ve blogged about this on here or gone into it in much depth other than in individual conversations, but I saw someone posting about this and I lost the post ( the joys of not having to have a chance to reply at work!) And funnily enough the subject came up again on another board that I use this week too, so I thought I would come on and share my experience of it.
Now this is very much a personal and I am by no means telling anyone to come off their drugs, I am not a doctor or a medical professional in any way shape or form. I’m just becoming an old hand at the neuralgia business, and read all I can find, much like the rest of you, so please don’t take my word as gospel, it’s just what’s happened to me and my journey with this beast.
Now I’m at my 3 year point with this and eventually got my diagnosis of GPN after more than 2 years ( livingwithgpn.org is on it’s way for all you other glosso’s round here!) However that was a long time in coming and my diagnosis was muddied somewhat firstly by the fact that there is TN in my family already, and also that I was having extreme facial pain, so for long enough, all the diagnosis were focusing around TN and ATN etc.
After 1 week of my neuralgia starting, I was put on carbamazapine ( the fast action stuff) within the first couple of weeks my neuralgic pain was much better controlled but I was beginning to get bad pain in my cheeks and forehead, I went back to my doctor, and he prescribed gabapentin along with the carbamazapine, we assumed that the additional pain that I was having was just part of the same condition so I carried on taking the drugs, my pain got worse, so I took more drugs, it got worse again, so I took again more drugs and I somewhere got lost in this cycle of pain, and drugs, I had by that point moved onto the tegretol retard, and tried it in combination with lyrica, gaba, and lam, and various other things thrown into the mix all in varying combinations and cocktails, all to no avail, the terms ATN, AFP, all of those were being bandied about, I was depressed and battling with horrendous side effects, a list although none life threatening far too long to try and list or indeed remember now.
Anyway I was on another board that I use about 18 months ago, and read someone’s posting, and if I recall correctly it went along the lines of their neurosurgeon saying not to worry about their atypical pain prior to MVD because it could well be the drugs that were giving them the additonal pain. Now this was an earth shattering moment for me, I couldn’t believe that that could be the case! Could all of this pain I was in actually be caused by what I was taking to make the pain go away? None of it made sense, so due to the fact of wanting a family, and wanting to minimize the amount of drugs I was taking I decided I was going to try to get off the polytherapy ( at that point I was on retard, gaba and lam and get down to a mono treatment regime ) I started very slowly to come off the lyrica, I was very careful about doing it, because coming off the gaba had nearly killed me, so I took it slowly, then stopped the lamotragine.
Initially, it was rough, there’s no disputing that, but although it got worse before it got better the pain that was bringing me to my knees, leaving me in tears, ruining my life, turning me into a useless shadow of who I was and leaving me far less able to cope with the true neuralgic pain was gone. All of a sudden I felt far more equipped to deal with the neuralgia, and life as a whole, plus with the other side effects eliminated I was a new woman.
I spoke to my pain consultant about it, and her response ( as someone who has for years specialized in facial pain) said, that was a very brave thing to do but and that she wasn’t surprised that the pain had in essence just stopped, apparently the drugs can do something to the nerves while they are screwing up the signals, and it just puts them all wrong.
For me I could not possibly have made a better choice.
This last week to a fortnight though I have been having some really bad spikes and the retard tabs I take haven’t really been taking care of it as well as I would like, so I’ve been taking a lot of the fast acting carbamazapine on top of it, and the atypical pains seemed to be grumbling a bit, but I just put it down to the eagles, and to the changes in weather and temperature, and hadn’t really thought too hard about it.
2 days ago however I was at work and realised that I was out of the retard tabs, I didn’t have any with me at all, and I was having quite a bad day , so I was throwing the fast acting ones down my neck like smarties, and you know what, all of a sudden it dawned on me, the fast acting carbamazapine gives me pain! Even after the discovery I had never blamed the fast acting carbamazapine, I need to have at least a couple of hundred milligrams, but it actually gives me pain, while at the same time taking the edge off the neuralgia. I couldn’t believe that I hadn’t realised that the fast action stuff did it to me too, it’s amazing, 3 years before I make a connection!! ( tegretol retard, it does exactly what it says on the tin!!!)
I would love to survey people who take the anti convulsants to see what their experiences have been on this, I know of a few people now who have had the same problem ( and after taking them for non facial pain related issues, ) it’s difficult though to determine for a lot of people what is true ATN/AFT and what is drug induced ( unless it’s followed the long term TN path ) there’s something wrong about trying to survey a group of patients for a side effect of face pain when their initial condition that they are being treated for was face pain!
I guess your control group would have to be people taking it for some other reason, to be a true reflection. The side effect of facial pain is listed no where on any of the 3 drugs I mentioned though, migraine yes, throat pain yes, all manner of other wierd and wonderful things, including lactating, ( also in men!) but nothing about facial pain
My real concern it this though, it that people classic TN are taking these drugs, experiencing the same results as I did, and because the side effect so closely resembles ANT/AFP, that they are being told they can not have surgery to relieve their actual true neuralgia, and they then go on to suffer indefinitely, it just seems so wrong,especially when the longer you leave surgical intervention, the more difficult it is to achieve a good result! When all along the drugs that are supposed to be making you better are making your pain 100 times worse ( or at least that was my experience)
So I thought I would share, see if anyone else had a similar experience with them or any thoughts to throw into the mix, this particular subject facinates me, but I can find no literature about it, it all just comes up of these drugs being used in treatment, not that they could be a cause.
Anyway for now though I will love you and leave you, but as ever all my love to one and all
Gracie x x x
Hello hello my lovely lot.
Gracie, I can’t tell you much about carbamazapine because I’ve only ever taken half of one tablet [I’m going down the self-help TMJ exercises route]. However I can tell you what happened when the neuralgic pain stopped, to be replaced by facial muscles going into spasm. I had severe pain where it had never been before–high in my cheek & I had difficulty swallowing. I’m not trying to say that the drugs didn’t cause your pain but I sometimes think that the role of these powerful facial muscles gets overlooked, we focus so much on the nerve. Things are calm for me now.
Thank you for your reply, I am pleased to hear that you have got your pain under control, long may that continue!
I wont argue that a lot of the time there are issues like myofascial pain and TMJ etc that are overlooked, and it’s just part of the complicated nature of cranial pains, there are so many factors and if’s but’s and maybe’s that it can be very very very difficult to determine the exact cause.
We see it all the time hearing from people have suffered for years, been through hundreds of tests, oral surgeries etc before finding a true diagnosis, I was lucky that I managed to get a diagnosis as to the true cause of my pain (secondary GPN) before I had to undergo unnecessary surgical procedures. ( or at least inappropriate to my particular condition.)I know a woman on the other board whose daughter had an MVD for what turned out to be a myofascial issue, it’s a scary thing, and I am a firm believer that being sure of the condition/cause of the condition and being well educated is crucial.
I have has muscle spasms in my face during my first week of having this problem, and my face was twitching all of it’s own accord for hours a day and it’s a horrible thing, so you have my sympathy for having to deal with that too, thankfully that settled for me, once I had the neuralgic pain under better control. Unfortunately it was soon after that the other pain started.
This may be something that doesn’t affect many people, but I have spoken to a number of folk who have had experiences almost directly echoing my own. I don’t know, the whole issue of facial pain is so complicated, and there are so many varying factors it’s really difficult to pin point things, but I just thought it might be information worth sharing, and I’m interested to see if anyone else here has had similar experiences.
All the best
Gracie x x x
I understand that sentiment well, how I kept my job is some kind of miracle, because I really wasn’t functioning. It’s funny you mention that, because not long ago I read an article somewhere about pain pills causing pain too,but it related to headaches, not this nonsense and it was centered round analgesics, not anticonvulsants. I hadn’t remembered until now. Was either of these the articles you read?
"The result is a vicious circle, where a sufferer takes a drug to make the pain go away, but in doing so ensures that it recurs.
Scientists are not sure why taking headache pills regularly can cause pain to rebound. "
Maybe the same is true for us! Mmmm, they used the term re-bound headaches, I will be back, you’ve just reminded me of this, I have some research to do!!! Maybe this is all connected.
Thanks Nancy, x x x
I don’t think I had ever heard that term before, I could find nothing to link the 2 types of pain other than that they were treating the problem of rebound headaches with anticovulsants.
I’m thankful that migraine isn’t something I suffer from regularly ( I very very occasionally get them around the time my period’s due, and I’m usually able to sleep it off,but because it’s so very rare that it happens I’ve never sought medical assistance for it and it has never altered my life in any way other than being a write off all day and having to go sleep in a dark room for 12 hours, so it has no where near affected me the other issues I have so I never followed it up)So I absolutely appreciate just how different the pain is from a headache!
I’ve tried in so many ways so many times to describe the atn/afp that I was experiencing, and nothing came close to doing it justice, maybe a migraine like pain in my face would make it more understandable? I dunno, but it’s piqued my interest, ( I want to clarify that though, because facial migraine is a condition in and off itself and that is something I have never investigated or been diagnosed with, just for the record! )
hmm off for more cyber research and I’ll see what I come up with.
Gracie x x x
I was taking neurontin and trileptal and tylenol 3. The doctor added tegretol at a low dose. By the second day I had some of the worst pain ever. I thought how can the tegretol cause me more pain. But apparently the tegretol affected the levels of my trileptal and tylenol. The literature states that this is just a possibility but it happened to me. My doctor then said that I should up the dose drastically but I was too afraid to try it so I didn’t. I don’t know if this is the same situation as you described above.
I’m sorry that this is how it played out for you, none of the literature I’ve read has said anything like that, but inserts can be quite different on this side of the pond! when you google anticonvulsants causing pain all you get is information saying they are used to treat pain, not cause it!
I hadn’t made the connection and I got stuck in this more pain more drugs loop for a long time, can I ask what kind of pain were you in when you started the tegs? For me, it eased off the really sharp stuff, ( For GPN, but we thought it was TN for a long time because of it being in the family, and the drugs, causing pain in my actual face too, so it muddied the diagnosis)
But the pain the drugs caused was like a deep burning, crushing, drop you to your knees relentless thing that took over my life, and I never ever made a connection to that pain being drug related.
But the more I speak to people since realizing that was my problem, the more people seem to have experienced this to one level or another, quite a few like yourself,made the connection right away, and thankfully didn’t continue with the drugs,others like me don’t realize what’s caused the problem.
It’s something that really interests me, I wish I could go to the people in the white coats with a whole load of examples and say " look at this!!! fix it!!! Let People know what’s happening to them!"
Anyway thank you so much for writing. All my love and best for pain free days.
Gracie x x x
The trileptal I’m taking is giving me headaches, the regular kind. No fair!
Mark, that’s rough, I’m sorry that you’ve had headaches from the trieptal, is it doing enough good though to warrant the bad though is the question!?
Gracie x x x
Yes, It’s keeping the tn pain away.
It’s a real trade off but lesser pain ( albiet a nightmare and somewhere else) is definitely better than TN pain, so you gotta run with it!
I hope it starts to ease for you soon though.x x x
Thanks very much Grace.
No probs hun. You take care of yourself .x x x
I found this under rxlist.com. The lists of drugs that may have levels decreased include oxcarbezepine (trileptal) and acetaminophen (tylenol) which I take. The pain was very bad, the worst I’ve had since my MVD. I thought about trying the higher dose to get it into my system but while I was thinking about it, tremors started the following day. So I decided not to try it at all. And then I tried baclofen the following week. I am going to post my experience with that to see if anyone has had trouble with it. Baclofen was a a worse experience. And my TN pain is increasing. My pain is typical TN pain along with severe tingling and background pressure (atypical pain). Here is the excerpt from rxlist.com.
Tegretol induces hepatic CYP activity. Tegretol causes, or would be expected to cause, decreased levels of the following:
acetaminophen, alprazolam, dihydropyridine calcium channel blockers (e.g., felodipine), cyclosporine, corticosteroids (e.g., prednisolone, dexamethasone), clonazepam, clozapine, dicumarol, doxycycline, ethosuximide, haloperidol, itraconazole, lamotrigine, levothyroxine, methadone, methsuximide, midazolam, olanzapine, oral and other hormonal contraceptives, oxcarbazepine, phensuximide, phenytoin, praziquantel, protease inhibitors, risperidone, theophylline, tiagabine, topiramate, tramadol, tricyclic antidepressants (e.g., imipramine, amitriptyline, nortriptyline), valproate, warfarin,ziprasidone, zonisamide.
In concomitant use with Tegretol, dosage adjustment of the above agents may be necessary.