Ibuprofen

I just read an article and it said ibuprofen is NOT helpful. I'm using 800mg every 4-5 hours and am in constant pain...was up 3x last night (once in crisis pain) with the ice pack then heat, ended up finally being able to sleep in my recliner for 2 hours...went back to bed around 3:30 am and slept til 9. Today is just constant aching. What are everybody's thoughts on ibuprofen? What about taking a Benadryl before going to be or a Tylenol PM? I have been on Lyrica for almost 4 weeks now and I just don't believe it's doing squat for me....

Ibuprofen usually takes the edge off of my face pain but since I had a tooth pulled last week ibuprofen does nothing for my pain. I started taking my Amitriptyline again..Doesnt Lyrica take awhile to take effect? Do you have a doctor? Maybe you need to be prescribed different medication instead of Lyrica or along with it? I hope you feel better...This face pain stinks...

Yes I have a neurologist who has told me to be patient, but that's easy for him to say....I tried Tegretol for 2 weeks and it didn't help at all....I see him this Wed. and that day can't get here fast enough...I wonder what I'm doing to my liver with all the ibu I've been taking for months now....I've just about had it!!!

Hi Turtlebug, Before I was diagnosed by a neurologist, several dentists and doctors I'd seen had told me to keep taking ibuprofen daily. I was taking them like candy everyday because the constant pain was so awful and no one seemed to know what it was. I did this for over a year and eventually I started getting mouth ulcers, tons of them, all the way down into my throat and was constantly feeling like I was choking and/or my throat was swollen. Back to the doctors again ... at first he thought I had an oral yeast infection which I thought was bizarre - never had anything like that before. So I took a month of anti-fungal prescription plus still taking ibuprofen daily. The ulcers got so bad to a point where I could barely eat or swallow (lost 20 lbs) and I was still in agony 24/7 from atypical TN too. The ibuprofen did nothing for the pain either, by the way.

Finally, I was prescribed indomithecin for the TN pain to start with after I saw the neurologist the first time. He wanted me to try tegretol or neurontin but I'm trying (still) to manage without meds I need to take everyday. That made the ulcers worse still! It was then that the doctors put it all together and figured out I'd built up an intolerance to ibuprofen and all related meds. (Indomithecin is a stronger version of ibuprofen I was told). Just a cautionary tale, of course we are all so different but I wouldn't wish that nightmare on anyone. I was told to stay away from ibuprofen, motrin, advil etc. for good. If things are bad I've been taking 1 tramadol + 1 500 mg extra strength tylenol at night. That combo doesn't alleviate the pain but they do make me drowsy which helps in getting to sleep. I have a prescription for tegretol but I'm holding out as long as I can on that. I'm very afraid of what side effects I may have. I'm living day to day, sometimes hour to hour but knowing what's wrong with me took some of the stress away at least.

Good luck, I really hope you get the pain under control very soon and have relief. Take care.



stephanie said:

Ibuprofen usually takes the edge off of my face pain but since I had a tooth pulled last week ibuprofen does nothing for my pain. I started taking my Amitriptyline again..Doesnt Lyrica take awhile to take effect? Do you have a doctor? Maybe you need to be prescribed different medication instead of Lyrica or along with it? I hope you feel better...This face pain stinks...

Lyrica usually takes about a week or so to be effective. Carbamazapine (Tegretol) is another more potent drug in the same class as Lyrica and might help. Be careful both Lyrica and Tegretol can have serious side effects. Both of them gave me Stevens-Johnson Syndrome (rare and deadly skin rash ). You might want to find if neurostimulation is the answer for you as it was for me. I have ATN which affects the left hemisphere of my head, left ear, and numbness on left side of jaw.

So almost 4 weeks on Lyrica does mean it's probably NOT working for me....my ATN also affects my left side, mostly jaw, teeth and below my ear...I'll ask my doc about neurostimulation...I'm desperate and in fear for my job....I can't be on drugs that will make me unsafe to drive....

Yes that's the same with me, just take ibuprofen...but that didn't entirely take the pain away just made it more bearable. It seems like since I've been on the Lyrica I've gotten worse....I'm not taking any more ibuprofen and am planning on taking a Tylenol PM in a few hours to help me sleep...my worst breakthroughs have been in the middle of the night.



Obsidian said:

Hi Turtlebug, Before I was diagnosed by a neurologist, several dentists and doctors I'd seen had told me to keep taking ibuprofen daily. I was taking them like candy everyday because the constant pain was so awful and no one seemed to know what it was. I did this for over a year and eventually I started getting mouth ulcers, tons of them, all the way down into my throat and was constantly feeling like I was choking and/or my throat was swollen. Back to the doctors again ... at first he thought I had an oral yeast infection which I thought was bizarre - never had anything like that before. So I took a month of anti-fungal prescription plus still taking ibuprofen daily. The ulcers got so bad to a point where I could barely eat or swallow (lost 20 lbs) and I was still in agony 24/7 from atypical TN too. The ibuprofen did nothing for the pain either, by the way.

Finally, I was prescribed indomithecin for the TN pain to start with after I saw the neurologist the first time. He wanted me to try tegretol or neurontin but I'm trying (still) to manage without meds I need to take everyday. That made the ulcers worse still! It was then that the doctors put it all together and figured out I'd built up an intolerance to ibuprofen and all related meds. (Indomithecin is a stronger version of ibuprofen I was told). Just a cautionary tale, of course we are all so different but I wouldn't wish that nightmare on anyone. I was told to stay away from ibuprofen, motrin, advil etc. for good. If things are bad I've been taking 1 tramadol + 1 500 mg extra strength tylenol at night. That combo doesn't alleviate the pain but they do make me drowsy which helps in getting to sleep. I have a prescription for tegretol but I'm holding out as long as I can on that. I'm very afraid of what side effects I may have. I'm living day to day, sometimes hour to hour but knowing what's wrong with me took some of the stress away at least.

Good luck, I really hope you get the pain under control very soon and have relief. Take care.

Have you gotten lidocaine patches? Can help mannny

Up to 12 hours.

If lyrica not working on week four… Either not high enough, or not your med.

Keep researching… Most of these neuros are stabbing in the dark… Literally

Hi Turtlebug,

Sorry to hear about your pain. I was told to come off the Ibuprofen as was taking too many. Neurologist has put me on Indomethicin (Sp?) for the headaches and that is working amazingly, but can't be on it for a long time as it is so strong. However, I'm now trying Lamotrogine and I have to say it is crap. I'm on 100mgs now and it is rubbish, just complete rubbish. I'm planning on going back on Pregabalin as this is one of the best meds that I have been on. I've tried Tegretol (which was fantastic as well) but had an allergic reaction to it so had to come off. I'm also on Amitryptilline which helps me to sleep at night - just makes me that little bit drowsy. I also use the Capsaican cream when the TN2 pain is quite bad.

Pregabalin takes a while to build up to the level that you might need to be on, but there can be quite bad side affects to it. I learnt to manage the side affects and worked around timings of taking the med so that the majority of side effects was when I was home That way I could 'function' at work. Maybe your not at the level that will work for you, or maybe not the right medication for you. Don't give up hope though.

BTW - I have TN, AFP and there's a question mark as to whether I have TAC. I've diagnosed myself with TN2 through this website and from researching, but dr's in England don't seem to know too much about TN2. They've just said that it is AFP which means that they don't know what to do. Oh well, still persevering in getting the right treatment...

Hope that you find something to help you.

Marcie

I was in some pretty intense pain before figuring out I had ATN and not a dental problem. Ibuprofen did nothing for me. Neither did Aleve. I found that Tylenol 3's helped me. Only at night, though, because they knock me right out. I think that is the only reason they actually helped.

My TN affects all of my teeth on my left side, my jaw, cheek and into my ear. I am taking Amitriptyline 40mgs. It has been my lifesaver!


Hi marcie,. I know exactly what youmean, I am , in Ireland and I had so much trouble and in painforso long before I was referred to a face pain dr but he even said he did'nt think I had TN, but he did prescribe amtrypline which didnot work, so he put me on lyrica, which has helped somewhat, its different for everyone, if a med dose'nt work go backto your Idoc and look for something else, I have diagnosed myself also from this website, which is just fantastic and I would like to say a special thanks to KC dancer KC who always takes time to give some help to
Marcie said everyone,

Hi Turtlebug,

Sorry to hear about your pain. I was told to come off the Ibuprofen as was taking too many. Neurologist has put me on Indomethicin (Sp?) for the headaches and that is working amazingly, but can't be on it for a long time as it is so strong. However, I'm now trying Lamotrogine and I have to say it is crap. I'm on 100mgs now and it is rubbish, just complete rubbish. I'm planning on going back on Pregabalin as this is one of the best meds that I have been on. I've tried Tegretol (which was fantastic as well) but had an allergic reaction to it so had to come off. I'm also on Amitryptilline which helps me to sleep at night - just makes me that little bit drowsy. I also use the Capsaican cream when the TN2 pain is quite bad.

Pregabalin takes a while to build up to the level that you might need to be on, but there can be quite bad side affects to it. I learnt to manage the side affects and worked around timings of taking the med so that the majority of side effects was when I was home That way I could 'function' at work. Maybe your not at the level that will work for you, or maybe not the right medication for you. Don't give up hope though.

BTW - I have TN, AFP and there's a question mark as to whether I have TAC. I've diagnosed myself with TN2 through this website and from researching, but dr's in England don't seem to know too much about TN2. They've just said that it is AFP which means that they don't know what to do. Oh well, still persevering in getting the right treatment...

Hope that you find something to help you.

Marcie

I've been off ibuprofen for 2 days now and guess what-it was doing NOTHING for my pain!!! And I do feel better, not so wiped out...went to work yesterday and today! I'm carrying around my "binkies" everywhere I go...that's what I've named my fleece mittens that hold my ice pack or heat packs! Had several co-workers ask me if my husband decked me, oh I wish it was that instead of ATN!!!! Off to the doc tomorrow and hope I get either upped meds or different ones...

I just want to say thank you to all who have replied...this is a great group!

http://www.livingwithtn.org/forum/topics/for-those-on-the-medicaion-merry-go-round-i-ve-compiled-a-list

Here is a list to print off for your doctor --- our favorite meds!!!!