I've been "diagnosed" with TN; it feels like the doctors ran out of options. I've had dental and sinus issues for 20 years and now have found that I have neither. I may be in denial--looking past what's in front of me. My symptoms are consistent with TN: face, neck, and dental pain--dull and extremely painful--mostly at night.
I also had stage 3 breast cancer 15 years ago, so scary I now have tendencies toward hypochondria. I try not to be a drama queen.
These are my questions:
1. Why does it feel like a cold coming on? Sore throat, drippy nose, sneezing, chills.
2. Has anyone tracked down their triggers? Mine seems to be travel, weather, and (I hate to say this out- load) wine. I never have this in the summer. I live in a dry climate at 4800 elevation, but always begin in September. This is why I thought it was allergies for decades--all that sudafed.
3. Anyone try the herbal remedies out there? Essential oils? Massage?
4. I'm on Gabapentin and I am afraid to increase dosage for the sake of the tiredness. I am very active and would hate to lose my energy level on top of the pain. Words of advice?
I’m sorry to hear you had to battle breast cancer and endure this all in one lifetime. I’m interested to see the replies to your first question because when my second flare up started I was saying with two days, before it became unbearably painful , that I thought I was getting the start of a Sinus infection. Once the attack became full blown though these flu like symptoms went away. Just pain from there on.
My triggers are also cold, wind, very hot or very cold beverages and when I am very bad any slight touch to my left cheek, left temple and scalp in that area and also under my chin, left side. All of these will trigger pain for me when in a flare up.
I tried acupuncture to no avail I’m afraid. Lovely lady though who gave me a peppermint oil to rub on. That did not help either but have found it great for a nigly disc!!
I can’t help you on the dosage and tiredness. I kept upping my dose until I could get relief, under doctors instructions, which left me like a zombie for almost 6 weeks. I have found that I am however coming around to it now. I find if I can manage to get a good night’s sleep which amitriptyline is doing wonders for me, I can function pretty well once I wake for about 6 hours. After that it’s game over and everything is an effort. I’m hoping that in a little more time I might be able to knock another couple of hours out of my energy levels.
Many people trigger on seasonal changes, air travel or sudden changes in weather. It appears that some are sensitive to changes in barometric pressure as well as (possibly) humidity or temperature. However, in the 19 years I've been talking with chronic face pain patients, drippy nose, sore throat, sneezing and chills tend to be associated with colds and viruses, not with TN as such.
What dose of Gabapentin are you on? Side effects with this medication can vary greatly between individuals. My wife has been on this med for 15 years at 2700 mg/day, with relatively few effects. But I've talked to others who couldn't tolerate dose levels even as low as 600 mg per day in divided doses. As noted by Suzi, you might also acclimate to the drug even if the initial side effects leave you very fatigued. Best to give it a few weeks.
I've also talked with people who tried herbal remedies, essential oils and massage. While these therapies most likely won't hurt you, I've seen no medical evidence that they reliably help a lot of people either. A great deal of what I see written on all three in internet sources, I must consider to be fraudulent hype. If you are going to research these methods, I suggest you start with the US National Library of Medicine -- Pubmed, at the National Institutes of Health. Run combinations of "trigeminal neuralgia", plus "herbs" or "essential oils" in that database of 20 Million Plus abstracts, and see what you come up with.
Sore throat, drippy nose, sneezing can all be signs of trigeminal nerve complex irritation, as can misdiagnosed sinusitis.
Weather changes including barometric pressure will/ does influence the trigeminal nerve complex.
Medication, as I am sure you are aware only at best dampens the symptoms and does not cure any ailment itself.
Don't be put off any treatment that isn't ' evidence' based, as RED states it is unlikely to harm (though there are risks).
Searching PUBMED for any of the alternatives is pointless, evidence based medicine serves the dollar, these alternatives make no money for big corporations so you will never find meaningful trials, it just perpetuates their cause and advocates for evidence medicine are their voice. ( political I know, my opinion sure, but deserves a mention ).
If you hear of anecdotal symptom relief, perhaps try it, it is possibly preferable to a life time of Meds with side effects, destructive procedures or drilling holes in heads.
This fall especially was very nasty for me. It was the first time that sinus symptoms were on the top of my TN pain list. I too thought it was allergies or a prolonged cold until my multiple DR trips started reminding me of every other new TN symptom that I have experienced over the past two years. Not only were my sinuses killing me but I have been having pain down the one side of my throat and weird sensations across the back of my mouth. I also have a runny nose and teary eye on the one side during some flares.
My summer was so great that I actually went off my med but sure enough two weeks after going back on it my symptoms have diminished greatly. I am on Nortriptyline. Have you ever tried a tricyclic? They can be very helpful for the constant, atypical pain.
Weather and the season changes always affect my TN. Every winter sucks for me and this one is starting off the same. Other triggers for me are lack of sleep, stress and my cycle.
Thanks Red. I appreciate your thoughts on alternative medicine. As a breast cancer survivor, I witnessed many women that would forgo chemo to "cure" their cancer with Vitamin C or herbs. Some had fatal results. I would only use alternative as an adjunct therapy to help relieve symptoms and help me be a contributor to my recovery. I hope that makes sense.
Right now I'm on 600mg of Gabapentin. I just upped it from 300 during Christmas since we had a string of storms and I had a very bad attack on 12/23. I never knew a pain like that. I am a little nervous about gabapentin because I have a history of depression. Combine that with a very busy work schedule with a grueling job, I didn't think it was a good time. The doctors gave me no other options.
Francine Richard A. "Red" Lawhern said:
Many people trigger on seasonal changes, air travel or sudden changes in weather. It appears that some are sensitive to changes in barometric pressure as well as (possibly) humidity or temperature. However, in the 19 years I've been talking with chronic face pain patients, drippy nose, sore throat, sneezing and chills tend to be associated with colds and viruses, not with TN as such.
What dose of Gabapentin are you on? Side effects with this medication can vary greatly between individuals. My wife has been on this med for 15 years at 2700 mg/day, with relatively few effects. But I've talked to others who couldn't tolerate dose levels even as low as 600 mg per day in divided doses. As noted by Suzi, you might also acclimate to the drug even if the initial side effects leave you very fatigued. Best to give it a few weeks.
I've also talked with people who tried herbal remedies, essential oils and massage. While these therapies most likely won't hurt you, I've seen no medical evidence that they reliably help a lot of people either. A great deal of what I see written on all three in internet sources, I must consider to be fraudulent hype. If you are going to research these methods, I suggest you start with the US National Library of Medicine -- Pubmed, at the National Institutes of Health. Run combinations of "trigeminal neuralgia", plus "herbs" or "essential oils" in that database of 20 Million Plus abstracts, and see what you come up with.
Thanks Red. I appreciate your thoughts on alternative medicine. As a breast cancer survivor, I witnessed many women that would forgo chemo to "cure" their cancer with Vitamin C or herbs. Some had fatal results. I would only use alternative as an adjunct therapy to help relieve symptoms and help me be a contributor to my recovery. I hope that makes sense.
aiculsamoth said:
Hi Fran,
Sore throat, drippy nose, sneezing can all be signs of trigeminal nerve complex irritation, as can misdiagnosed sinusitis.
Weather changes including barometric pressure will/ does influence the trigeminal nerve complex.
Medication, as I am sure you are aware only at best dampens the symptoms and does not cure any ailment itself.
Don't be put off any treatment that isn't ' evidence' based, as RED states it is unlikely to harm (though there are risks).
Searching PUBMED for any of the alternatives is pointless, evidence based medicine serves the dollar, these alternatives make no money for big corporations so you will never find meaningful trials, it just perpetuates their cause and advocates for evidence medicine are their voice. ( political I know, my opinion sure, but deserves a mention ).
If you hear of anecdotal symptom relief, perhaps try it, it is possibly preferable to a life time of Meds with side effects, destructive procedures or drilling holes in heads.
Thanks everyone. It was a tough Christmas. I had a BAD attack on 12/23. I nearly went to the ER. I never knew pain like that. It was so bad I started vomiting at 3am and hubbie got really scared. I called the DR in the morning, I was upset and tearful. He didn't offer any options except to up the medicine (Gabapentin) to 600mg as he described. I was only taking 300mg. I was nervous about this drug (and I told the DR this when we prescribed it) that I have a history of depression.
Just in the last 3 months, the pain and number of attacks have become more often and more severe. Its a little better after a week of 600mg, but I can feel the throbbing, just not as bad. I have an appointment with a different Dr, but not till April...geez.
El Nino is promising more snow and snow storms. So at least now I can plan for an attack and be gentle on myself.
This is a good encouraging group. thanks for your kind words.
You poor thing! If the doctor's doesn't offer any solutions for you, get another neurologist who specializes in TN like a Neurosurgeon. Gabapentin did not help me for a lengthy time. I was so drousey and sick on it. I couldn't live that way. TN is so violent before you will need a surgical surgery of some kind. If you are interested in what kind, write me back.. I had them all and nothing worked for me. They may help you however.
My last resort was a facial Ritzotomy. I do not have the pain anymore. The side effects are better than the searing pain you have. I can live with the side effects not the pain of an attack.
Fran Scene said:
Thanks everyone. It was a tough Christmas. I had a BAD attack on 12/23. I nearly went to the ER. I never knew pain like that. It was so bad I started vomiting at 3am and hubbie got really scared. I called the DR in the morning, I was upset and tearful. He didn't offer any options except to up the medicine (Gabapentin) to 600mg as he described. I was only taking 300mg. I was nervous about this drug (and I told the DR this when we prescribed it) that I have a history of depression.
Just in the last 3 months, the pain and number of attacks have become more often and more severe. Its a little better after a week of 600mg, but I can feel the throbbing, just not as bad. I have an appointment with a different Dr, but not till April...geez.
El Nino is promising more snow and snow storms. So at least now I can plan for an attack and be gentle on myself.
This is a good encouraging group. thanks for your kind words.
There are many interests represented here, Fran. For guidance as a newly diagnosed person, you might want to review the information under the TN Basics tab on the menu at the top of the page.
I wish you wellness,
Red Lawhern
Fran Scene said:
Please this discussion off this thread. I am needing guidance as a newly diagnosed person. I am not interested in this.
forums, can like any conversation at said dinner party, move off topic so apologies. I would add you might consider all options before invasive/ destructive procedures. Wishing you all the best for the new year, and answers to your problem.
I'm sorry that you have had such a hard time over the holidays. Finding relief from this pain is not easy. I have gone to the ER a couple of times but nothing they can offer helps. No pain medication will touch this. They will usually just give me a shot of dilaudid and while it does not take the pain away it is often enough to knock me out so I can get some sleep and hopefully break the pain cycle, even a wee bit.
If the Gaba is helping then continue on as it takes some time to kick in and if it is relieving some of the pain then a higher dose may get rid of it all. None of the medications used to treat this are ideal and they all come with some nasty side effects. Hopefully you will tolerate Gaba well. It is often a process of trial and error with finding the right med. Which of course takes time and leaves you to deal with the pain for much longer then you want to. Hang in there!
I have gotten some relief with physio and acupuncture. I had to have physio for a neck issue and it ended up helping with my facial pain as well. It has not cured it at all but keeping up with both treatments has made a world of difference for me. The acupuncture is an amazing relief and I highly recommend it as a release for stress and anxiety.
I work full time too and have a fairly hectic schedule. I want you to know that stress, anxiety and lack of sleep are huge triggers for me. It took me quite a while to really clue into that. It is really important to take care of yourself right now. I know it is easier said then done but you really need to get rid of as much stress in your life as you possibly can.
We are here for you any time. Ask anything!
Jane
Fran Scene said:
Thanks everyone. It was a tough Christmas. I had a BAD attack on 12/23. I nearly went to the ER. I never knew pain like that. It was so bad I started vomiting at 3am and hubbie got really scared. I called the DR in the morning, I was upset and tearful. He didn't offer any options except to up the medicine (Gabapentin) to 600mg as he described. I was only taking 300mg. I was nervous about this drug (and I told the DR this when we prescribed it) that I have a history of depression.
Just in the last 3 months, the pain and number of attacks have become more often and more severe. Its a little better after a week of 600mg, but I can feel the throbbing, just not as bad. I have an appointment with a different Dr, but not till April...geez.
El Nino is promising more snow and snow storms. So at least now I can plan for an attack and be gentle on myself.
This is a good encouraging group. thanks for your kind words.
I am definitely in more pain after consuming alcohol. A sad truth. I can live without alcohol, but I do enjoy a few cocktails now and then. Sad that it has that effect. I think that most of us wake up feeling pretty ok, but as the day goes on, the pain or burning comes back. I feel great when I am asleep!!!! :)
I am on gabapentin and duloxetine now. They were working, up until yesterday where the pain started to come back. I hate being tired too....but I hated the pain more. I have tried chiropractic and acupuncture. I thought that they both worked in the beginning, but I believe that I had the placebo effect, because in the long wrong, it was just a waste of money, for the ATN at least. I had also tried all kinds of herbal remedies, natural cures, oil pulling, oil of oregano, etc. They did not seem to work. They made me feel better in other areas,,,,but not with the TN. I am going to be asking for an increase in my meds. I dread falling asleep in the middle of the day time, but for now I would take that over the pain.
I had difficulty with gabapentin as well. It made me foggy and I had a hard time keeping up with my kids and our busy family. I was switched to a delayed release form of tegretol, which alleviated the tired-confusion and was even better for my symptoms. There’s no harm in asking about alternatives… It may be that an entirely different medication will work best for you.