Posted , 6 users are following.
I am in the midst of a bad flare up which has lasted over a week, it’s making me so miserable that Im upping my medication, this seems to happen every three months or so.
In the opinion of fellow sufferers does pain breakthrough indicate that I’ve done something to irritate ‘the beast’ and it can be rode out or does it generally mean dosage needs to be upped on each occasion?
0 likes, 14 replies
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saaz79347 anne40307
Posted
Speak to your doctor about suddenly upping the dosage, because i know that if you up it a lot and then want to reduce it again, it has to be gradual so as to not shock the nerves and irritate them. I was told that a combination of meds sometimes works better but never tried it as i was only on Tegretol and kept upping the dose to approx 1000 mg / day until i couldn't handle how it made me feel and then decided on MVD surgery. ( the combination some people like is Baclofan, with Teg)
TN attacks for me and from my research were totally random. Most of my nero's also told me that there would be no pattern for flare up's. I know that stress caused me more flare up's, for some people it could be diet, or lack of rest.
anne40307 saaz79347
Posted
Thanks for your reply. Must admit the thought of surgery is very scarey, have you had the MVD or still awaiting it?
saaz79347 anne40307
Posted
I had MVD on March 31st 2016. I have posted my experience with it in this forum. If you click on my name and scroll to the bottom of the page where it says view all replies, you should be able to find my posts from 9 months to 1 year ago. Let me know if you have trouble finding it, i can copy paste it.
marlene36342 anne40307
Posted
hsisk24 anne40307
Posted
susan33651 anne40307
Posted
According to most of the information out there, TN becomes less easily controlled by medication. So either the current dose would need adjusting or an additional medication added to the regime. Either way please speak to your doctor about this before you increase your dose. These drugs can have serious implications for your liver (and possibly other organs especially the kidneys).
Best wishes
anne40307 susan33651
Posted
Thanks for your reply, I too share your worries regarding the use of this medication and really dislike taking them but I guess there just comes a time when I have to accept the meds’ as friends rather than enemies, it’s taken me one year of constant TN to accept that.
what meds/dosage do you take?
susan33651 anne40307
Posted
Greetings,
I currently take Carbamazepine 1200mg per day in divided doses (I set my phone alarm to go off every six hours to make sure I take it!! Best piece of advice I was given from a member of this forum). I also take 70mg of Amitriptyline (20mg at about 8:30 - 9am and 50mg at night. I know it's supposed to be in a single dose but I had been getting a lot of pain in the first 4 - 5 hours of waking and my GP okayed it! When the pain is overwhelming I take Oramorph, Co-codamol (the stronger formulation), Tramadol, Ibuprofen in a variety of combinations until the pain stops. I also use a volcanically hot hot water bottle on my face. Just lately, since the morning Amitriptyline, I've had fewer attacks overall but every week - ten days I get an epic attack involving all three branches of the nerve on the left and on occasions accompanied by a migraine! I actually have a confirmed diagnosis of bilateral TN and migraine with aura, my body hates me!! Oh, and there's the Stabbing Headache Syndrome too, who knew?!
I've a few issues with double vision, but I'm not sure if that's the TN medication or the drug I take for autoimmune disease (maybe Lupus?). I get weird rashes too but again that could be the autoimmune disease. I find, though, that I get used to the side effects. On the whole my experience of pain has been alleviated with the medication by about 85%, it's the remaining 15% that still bothers me.
What has been your experience of this hideous condition?
Hugs.
anne40307 susan33651
Posted
Im so sorry to hear you are having such a terrible time yet you have somehow managed to keep your sense of humour and fighting spirit, you are a very brave lady!
Basically I’ve suffered with TN for the past five years and taken meds over the last year. I’m currently taking 600 mg Tegretol in three separate doses. I very naively thought I had seen more or less everything TN could throw at me during the last year and knew what to expect next....if only!
I suffer on the right hand side of my face with electric shocks, tics, varying amounts of pain in face generally, pain in gums and teeth, sometimes all branches going off together and most recently searing pain going through my teeth straight into my head which in the past has kept me awake at nights. My mouth swells inside which makes it difficult to talk and of course eat. I’m annoyed to find myself in this situation as it’s slowly and surely robbing me of my everyday life. I just want to be able to eat and drink what I want and be able to wash my face properly without having to suss out the parts of my face I can/cannot wash. It’s hard to accept and I’m fearful that the future holds more of the same, to be honest I try not to think about it, I’m trying to be positive and carry on as normally as possible no matter how bad I feel!
Many hugs back to you Susan, try to keep your pecked up.
susan33651 anne40307
Posted
It's a truly hideous condition and I often say that I wouldn't wish it on anyone, but secretly the list gets longer by the day! Queue jumpers are the latest addition. To be honest, laughing at myself and being positive is just as important as taking the drugs. For me it's the left that's worst, a variety of pains ranging from a burning, tingling to horrific stabbing in my eye. The electric shocks are also so sudden and painful that they literally stop me mid word! Luckily the right seems to be inactive at present, phew!
Do you have a good support system from family, friends and colleagues? I am fortunate in that regard.
Wishing you well.
anne40307 susan33651
Posted
Thank goodness I do have a good support system, especially my husband, however this has been the only thing during our married life that we can’t apply our usual logic too ie share problem and immediately fix it together then move on, it’s going to be more complex than that. As I am retired I don’t work which eases the pressure.
Here’s hoping that miracle cure is just around the corner.
Best wishes.
cathleen38205 anne40307
Posted
For my experience, and I've been having flare ups for about 4 years is I never take the drugs and it always subsides. I use frequency treatments at night while I sleep and Electro magnetic pulsing on my face. It works for me. Don't get me wrong, I describe this pain as the worse pain I have ever endured. Worse then having a baby but I won't let drugs take over me. Just my way of doing things. No judgement.
anne40307 cathleen38205
Posted
Thanks for your reply. I have suffered from TN for over five years and like you refused to take medication as the flare ups were very nasty but only lasted for eight days then it would go into remission for sometimes over a year then return again. Unfortunately this bout has lasted nearly a year and has driven me to the meds. It’s great that you can keep it at bay with the treatment you are using, hopefully you can stay away from the meds forever. Best wishes.
susan33651 cathleen38205
Posted
Hi,
Like you I didn't have medication for a very long time (about 10 years or so), but that's only because I thought it was a variation on migraine! It was only in the last 2-3 years after it got much worse that I started medication (Carbamazepine, I was already on Amitriptyline which was increased). The pain didn't respond to anything I took and it spread to other parts of my face and then the other side joined the party! It got to the point where I was getting hundreds of stabs and shocks every day mostly on the left side, and especially the eye, I had episodes lasting on and off for upwards of 20 hours every 8-10 days. I simply couldn't take it any more. I did some more research and realised that it had to be TN. (Shockingly dim of me considering I'm a nurse!!). My GP said straight away it was TN. Pretty much within a few days of starting the Carbamazepine the pain reduced. Unfortunately it does seem to come back and I have to increase the dose of Carbamazepine with the GP's approval of course. I'm at the point where things are about 85-90% better, so that's a success in my book!
I never thought I would be on so much medication but now that I am, I am so thankful for it.