I was lucky to be in remission for the past year and now they pain is back. My trigger is a change in temperature. If I go outside for a walk in the cold or if I get heated from running when I come back indoors or stop running the pain comes within about 15 minutes. I tried three different daily meds but can't stand feeling like a zombie. I couldn't work or drive. What I am wondering is if there is something I could take before going outside/running etc that would stop that pain or at least help relieve it. Thanks!
Prescription Lidocaine Patches !!!!
Can be cut down to specific sizes that you want
Last forever that way !
How quickly does it work? Can I put it on when I feel an attack starting or do I need to use it earlier?
You put it on when you feel that familar twinge - works within a minute
- or if you are certain whatever you are about to do is a 100% trigger put one on !
There is a group here listed for topical relief
Poke around and get a script if you can! No side effects for most -- a couple tried it on their arm first and broke out = very low percent on that here at least!
Some have special compounds made with lidocane and ketamine - compound pharmacist
Patches were about 30 a box with Insurance - but its a huge box - and by the time you cut each one up into 4-5 strips
its the best deal in town!
I’m afraid I can’t help you with an idea of meds., but my attacks can be brought on by cold. Last winter I only left home wearing a trapper hat and scarf!! I looked like Nanook, but the attack I had in January this year only lasted for 2 months and only affected 2 points in my face.
Good luck, I wish you well.
Roger.
Shiela, I know that many people detest the side effects of anti-seizure drugs. But right now there just aren't any medications that will "prevent" breakthrough pain from TN. If you had migraines, you could be tried on Indocin or one of the more modern preventative meds. But there just aren't any equivalents for TN. Lidocaine patches can be helpful for some people. And many people acclimate to more powerful meds over periods of a few weeks. What meds were you on and at what doses, please? For how long were they tried?
Regards, Red
Apo Carbamazepine 2-- mg 2x
Nova Gabapentin 300 MG - 2 capsules 3x daily
There was one more but I no longer have the bottle. I tried each one for about a month. I don't even like the feeling of cold meds so these were really harsh for me. Since I was in remission for quite a while I would like to find something that I can use for what I hope is a short period of time. ( I have to stay positive) Last go around I just put up with the pain but the attacks come on for longer periods this time so I need some help.
Thanks for the advice
Hi Sheila, The slightest breeze brings on an attack that is so severe that in winter I don't leave the house for 3 months. Now I know that that is not an option for everyone especially if you are a runner but would suggest you prevent by wrapping your head in some kind balaclava type headgear that will protect you from the cold. Even now in summer when it is chilly at night I drape a light fleecy blanket over my face so that it is not exposed to changes in the temperature. I don't think it is the heat that is causing the pain. It is the cold. Try to wrap up warmly.
Cheers
The cold is a trigger for me and I do have wraps to wear but even if I excersize in the house or on a warm summer day as soon as I cool down I get an attack. Am I the only one? That is how I first discovered I had TN I was training for Ironman and I could run for two hours but I would be in pain when I stopped. My bike was done inside and still the same problem.
I say I am hibernating in the winter but I have two dogs and a husband who travels so I can't avoid the cold unfortunately.
It seems to me that it is the cooling down factor which is causing the attacks. But, that is just my opinion. NOW! Sheila I have special empathy for you. In the first place I can't for the life of me fathom how you can be so brave as to do Ironman when you have TN. I have a special place in my heart for athletes, extreme athletes and especially Ironman. My son is an Ironman and an extreme athlete. This may be a long shot but I have Professor Tim Noakes' email address and telephone number and I am going to give them to you. As you will know he has an extra special place in his heart for all athletes - he has devoted his life's work to them at the University of Cape Town. Perhaps, perhaps he may be able to do some research and be able to help you. Here goes: ■■■■■■■■■■■■■■■■■■■■■■■■ or phone +27 21 650 2459.
And I wish you all the very best. You are very special.
Thanks! I did Ironman in 2006 and then started having severe pain when I was training for 2007. I had to pull out of the race because I just couldnt get the training in. After being in remission I set a goal next year of a half ironman and then another full in 2014. now the pain is back but I am determined not to let it get the best of me this time but it is hard. So I haven't done an Ironman with TN but if everything goes well I will. perhaps I should think about raising awareness while I try to reach this goal.
I have to agree with Red, it is my experience that you need to be on an anticonvulsant and then let it build in your system. After my first attack of TN it took 4-6 weeks to get to a therapeutic level. I felt pain relief within 24 hrs. But needed to work up to about 800mg to get long lasting pain relief.
It sucks, because of side effects etc.
And I too detest meds of any kind. Before tn only took meds when absolutely necessary.
Good luck! Hope you find pain relief soon!
(( hugs )) Mimi
One thing I just read on the internet was that an increase in blood pressure can trigger an attack. Perhaps that is why I get them from exercising. A thought anyways. I won't go back on the meds because for me it wasn't living. I would rather suffer through the pain than live like a zombie. Not fun either way but what can you do?
Sheila, you asked "what can you do"... and although I don't want to come across sounding like I'm fussing at you, there are other options than suffering or being tranked semi-conscious. Patient reactions to meds vary -- and different meds affect the same patient differently. Oxcarbazepine (Trileptal) is tolerated more easily than Tegretol (Carbamazepine) by many people. And you might also find that a lower dose of an anti-convulsant med is more effective when given with a low dose of a muscle relaxant like Flexeril, an anti-spasmodic like Baclofen, or a mild tranquilizer like Valium.
Please be advised also, that the longer your breakthrough pain is not controlled, the more likely it is to become worse and more debilitating over time. That outcome is observed frequently in pain management practice. As you note, an increase in blood pressure can indeed be one of your triggers. So can a burst of adrenalin when you react to sudden changes of conditions under heavy exercise. Many TN patients find over time that their best forms of exercise with minimal or no pain will tend to be non-impact exercise. Yoga and Tai Chi Chuan seem to have a record of positive results for many people.
I wish you well,
Red
Thanks Red. Perhaps I need to re-look at things and try again to find some meds that work for me. I was just hoping that I could take something short term when needed as of course I am hoping that I can go back into remission. Are you not in favour of the patch that was mentioned? It seems to be what I am looking for but of course at this point I don't know if it would work for me.
The Lidocaine patch might help you with break-through pain, Sheila. But it is likely that the frequency of your attacks and their severity will increase if you are not dampening down the overall tendency of your nerves to fire off an avalanche of pain under relatively light stimulus. Your central nervous system has become sensitized to these stimuli and trigger points, and will continue to react in this manner. The central tendency in trigeminal pain is for initial remissions to become shorter over time, and then for the pain to stay on 24-7 unless you are medicated. Some people do have further remissions. But what causes the remissions is as much a mystery as why the pain comes in the first place.
Go in Peace and Power
Red
Just so I understand. the patch will help with the pain ( possibly) but if I don't find a medication that works for me my pain will probably get worse over time? If this is correct then it is not a very happy prospect.
Reality sometimes isn't what we want, Sheila -- and medical reality varies between individuals, sometimes for reasons that aren't at all obvious. But "progression" of the chronic TN pain is a very common occurrence over time -- for a few unfortunate folks, as short as a few weeks or months, and for others over several years. For some folks even medications that initially work well, later stop working as well.
Surgeons tend to resist doing MVD in younger people unless all of the medication alternatives have been exhausted (with the probable exception of opioid drugs, which might be reserved for people in whom anti-convulsant medication hasn't worked at all well or the patient has Type 2 TN pain or both). MVD is often delayed because like other treatments, pain can come back later (about 50% of all MVD patients are pain-free after 12 to 15 years) -- and second procedures tend not to be as successful. So doctors may want to wait until the patient is more likely to have a pain free outcome until death by natural causes.
This patient population is caught between a rock and a hard place. And that condition is one of the reasons why I and some others are so active in pushing the medical community to get off its ass and DO SOMETHING NOW! Meantime, I try to do what I can here, to help patients locate information they need and doctors who are above average in their effectiveness and doctor-patient manners.
Regards, Red
Thanks Red. I do appreciate your input. I am not ready to give up running or my dream of another Ironman but I guess I need to look again at the meds that may help. I just thought that if was willing to put up with the pain to avoid the negative feeling of the drugs then that was that. I had no idea that I may be making things worse.
Red,
It is so sad that some people in the medical profession are just not willing to go the extra mile to help with TN. One neurologist I went to after I had been diagnosed sat back in her chair, crossed her arms and said:"There is nothing I can do to help you."
My husband and I were speechless. She is regarded as one of the top neurologists in our country. I had spent a week in her hospital having every conceivalbe test known to the medical profession and she had confirmed that I had TN and it cost us R100 000.
Another, also after I had been diagnosed didn't lift a finger while we were in his office and chatted away blithely to my husband about sport and eventually after about 45 minutes turned to me and said: "Well my girl I can tell you that you don't have Trigeminal Neuralgia. You are too young."
I was 57 at the time.
Then he said: "But I do have a friend who is a neurosurgeon who will cut the nerve and - bob's your auntie." This after telling me I did not have TN. So what nerve was he planning on advising his friend to cut. He was part of the process with the insurance company to ge me medically boarded so I supposed it was in his interest not to help me get boarded to save the insurance company money and for him to maintain the cushy lifetstyle he had - thanks to the insurance company.
Now because of the blackouts I have been having the psychiatrist I have been seeing after I had a near breakdown in March is going to insist that I go to another neurologist. That is why I am reluctant to mention the blackouts to her on Oct 25 when I have my follow up. I have lost all faith in neurologists. The meds that they prescribed at the clinic seem to be working relatively well. But I will not see a neurologist because that will just put me back onto the merry go round that I have been for all these year.
Richard A. "Red" Lawhern said:
Reality sometimes isn't what we want, Sheila -- and medical reality varies between individuals, sometimes for reasons that aren't at all obvious. But "progression" of the chronic TN pain is a very common occurrence over time -- for a few unfortunate folks, as short as a few weeks or months, and for others over several years. For some folks even medications that initially work well, later stop working as well.
Surgeons tend to resist doing MVD in younger people unless all of the medication alternatives have been exhausted (with the probable exception of opioid drugs, which might be reserved for people in whom anti-convulsant medication hasn't worked at all well or the patient has Type 2 TN pain or both). MVD is often delayed because like other treatments, pain can come back later (about 50% of all MVD patients are pain-free after 12 to 15 years) -- and second procedures tend not to be as successful. So doctors may want to wait until the patient is more likely to have a pain free outcome until death by natural causes.
This patient population is caught between a rock and a hard place. And that condition is one of the reasons why I and some others are so active in pushing the medical community to get off its ass and DO SOMETHING NOW! Meantime, I try to do what I can here, to help patients locate information they need and doctors who are above average in their effectiveness and doctor-patient manners.
Regards, Red