Advice please

Hi I’m currently on 600mg tegretol a day atm And I’ve had two really bad attacks today. Had one earlier this evening and it’s now 2am and another is just subsiding. . Is there a really strong painkiller I could take along with this when I am having an attack to help it? I know people have been prescribed others so I’m just wondering if there’s anything people find particularly good because I can’t cope with this I just need something else to take when attacks are this bad? Thanks

Hello, I have had TN for about 4 years now. I also have MS which brought on my TN. I take 600 MG of Tegretol every 12 hours, Baclofen 20 MG 5 times a day, Lyrica 300 MG every 12 hours. My anti depressant also has some pain relief in it. If I didn't piggy back all the others on top of my Tegretol I would not be here today. If you need anything please let me know

Thank you for your help :slight_smile:

As ebyrt says, baclofen along with tegretol helps many.You may need more than 600 mg of Tegretol, ask your prescriber, this is not the max dose. But please don't self medicate, Tegretol always needs to be titrated.

Is there anything that you can get OTC? Just with it being a bank holiday I will have to wait 3 days before I could try and get a doctors app to get prescribed other meds?

Elle can you phone your local late night pharmacist and ask them - they're probably in the best position to give you advice on this. Alternatively, your local emergency may be able to assist - especially if you have drug sensitivities.

Last time I was so bad I went to a and e to see if they could give me anything and after a two hour wait they gave me co-codymol and sent me away despite the fact they knew I was suffering from TN

Hello Elle
My best advice would be to be your own advocate. I hate going to the ER…if your having an attack sitting forever with all the noise and explaining what TN is and what an attack means feels like your teaching the nurses…sometimes even the drs is so exhausting. I stopped going a long time ago bcuz it actually makes an attack worse. TN is so rare that many drs only know what they read in that tiny part of the DSM. Which states TN is mostly in elderly people. …which we all know is way way false. Ask your neurologist to be prescribed a topical cream for pain. Also im not sure what type of TN you have but if you are having horrible attacks still with the meds you are on a combination of meds is probably what you need. There are many different meds that can be used separately or with different meds to at least make things bearable. Also you definitely shoukd be prescribed a pain medication such as percoset for when you have an attack to try and an at least take the edge off. The issue is that pain medications are made for actual people who are in horrible horrible pain. Drs have become really hesitant now bcuz of all the people who lie and are adicts so they are hesitant about even prescribed opiods to us who truly need them. If your dr is reluctant to do anything else for you…Get another one. I finally learned that after having TN for awhile. I always say…they work for me and my health is their job. I really hope at least a little of what i said helps at all
Good luck to you

Hi Elle,

Sorry to hear you are hurting so much. Been there. Often.

I will second the advice of others. Do your research. Find a doctor who will listen to you and do his/her own research with you. (I actually take copies of the research with me to doctor appointments). Often a combination of drugs will work when one drug alone is not successful. A caring, competent, knowledgeable physician will give you advice about when and how to increase your meds if you are having a pain flare-up.

Emergency rooms are never helpful; pain drugs don't work for us with TN and that is what the ER know to prescribe.

I understand that frantic feeling you have when it's the weekend and your pain is unbearable, but your doctor is not available.

You need to build yourself a toolkit of all the things that help when you are hurting the most: medicine, meditation, distractions, soothing music or silence, (I like smells, so maybe some incense or a candle burning), a kind friend giving you a foot massage.....whatever works for you.

It feels like this is a continuous search for relief from pain; I guess all I can advise is don't give up. Keep trying until you find what works for you.

Wishing you pain free days,

Rissmal

From 20 years of study, I can say with at least a bit of credibility that there is nothing over the counter which works reliably for TN pain. And not all people respond to even the strongest opioids. If you are in terrific pain and can't wait for an appointment, then please go to and emergency or urgent care facility. For future use in this situation, also suggest you print out the "Physician Advisory Form" from our "Face Pain Info" tab, and fill in the blanks. When you're having a hard time making yourself understood, that form can save you time and difficulty, and it tends to lend credibility to what you say to a triage nurse before seeing a doctor.

Regards, Red

Elle13 said:

Is there anything that you can get OTC? Just with it being a bank holiday I will have to wait 3 days before I could try and get a doctors app to get prescribed other meds?

Thank you everyone for your advice it has been really helpful! Bank holiday is finally over and I’ve managed to get a phone consultation with an “advanced practitioner nurse” later on so I have prepared a list of suggestions for her from what you guys have said! Wish me luck! I even took extra tegretol last night as the pain got too much. X

I too just went through the same so I took another couple of pills, it zonked me out for the night. Feeling drowsy today but pain free now thinking what to do before going back to work on Monday.

Hi Elle,

I'm sorry you are struggling right now. The strangest things can really set it all off. I'm just going to jump in with a little suggestion that helps me sometimes and I'm on a several medications. But there are those times when thing get so bad that I just lay down in a quiet room and apply heat to the whole side of my face. I gently lay a heating pad, not too hot, you don't want to burn yourself, and just try to relax with it. Heat seems to help me when things are out of control. It might work for you.

Cathy In MD

What about tramadol as a painkiller? Anyone tried it yet? And Marihuana can take the edge off.. With tegretol you can add antidepressants as others suggested...

I hope you’ve gotten some relief by now. I second the importance of a knowledgeable and caring doc. They may be hard to find, but they’re out there. There is an arsenal of drugs to try and a good doc can lead you thru them. I’ve been with me neurologist in Houston for 20 years and we’ve tried many meds. I’m currently on Tegretol, Lyrica, Vimpat (fairly new and expensive), Tramadol, and Baclofin. Sometimes it takes a cocktail. I’m confident you’ll find the right ones. Don’t give up - keep on trying.