New to trigeminal neuralgia was hoping for some insight

Hi Malak- I’m sorry you are experiencing this and will share my story of TN. Everyone is different so I hope I can give you a little help. I have both TN1 and TN2 due to MS so I have constant pain. The TN2 gives me more of a gnawing, burning pain and is less severe but it is constant. The TN1 are attack’s and I experience them mostly like stabbing, feels like a screwdriver is going deep in my gums, sometimes there are shocks. This is all in my upper right jaw.

you are on the traditional medication for TN and it helps a lot of people but may take some dose alterations. There are also other medications if it doesn’t work to try or to add as well.

You have very good dentists and are lucky in one sense (lucky! I know how dare she say that) but I had two root canals and one tooth pulled before I was diagnosed. Many people lose many teeth before they are diagnosed. You are also on the right path seeing a neurologist and getting an MRI. Yo are doing everything right.

To answer your questions:

1. Yes, definitely. The lucky b******s lol.

2. Yes. It depends on the person. For me ice helps and chewing gum actually dampens the pain. Talking is a huge trigger and I stay away from it when I have attacks. But for some people, they can’t have anything in their mouth. If it works for you and helps the pain and you are doing something nondangerous like that than all means help yourself. Your body knows what it needs I think.

3. Yes for some people for sure. Lucky b******s. Lol. No yes with TN1 that definitely can happen. 

Try looking at the the Facil Pain Association also for information. There is a great forum on Facebook called simply trigeminal neuralgia support where people will definitely answer questions like this also.

I hope you find some answers soon and get some quick relief and that tegretol works for you. Many times it can. But, if you need support it will be there for you. There are many people in the chronic pain community. I will send you blessings tonight. 💕

 

I must add as well that at 14 I had a Jackson Eplisey seizure the only one I had in my life and thru several tests they did discover a noncancerous small cyst on the pineal gland which resides in the interior of the brain. Now we were supposed to keep a check on it to ensure it didnt enlarge which we did for awhile and at time it did not but after a year or so we fall off. Anyone ever heard of this potential causing onset of trigeminal neuralgia if it did eventually grow In size.

I am pasting from an older response- it's quite long.  I will tell you that my daughter  had her 1 year 'surgeraversary' in May and thank G-d is doing well and starting school in the fall.  She traveled through Europefor 5 weeks a few months after surgery.  My daughter was diagnosed with TN in February 2017 while attending school in Madison Wisconsin.  She looked up her symptoms on the internet and asked the ER doctor if it could possibly be TN.  He said it was, gave her prescription for Tegretol and told her to find a primary care physician and a neurologist.  I am a retired nurse so I got busy here in the Boston area looking for a specialist and reading as much of the research as I could.  The neurologist in WI had only treated 2 patients with TN during the course of her career, and had seen a few diagnosed in the ER during her residency.  Usually, an MRI is ordered to rule out other conditions such as a brain tumor or Multiple Sclerosis.  MS symptoms can be similar because the sheath, a fatty covering on the neurons- (the cells that transmit nerve impulses), is attacked.  In some cases of TM blood vessels are compressing on, wearing away or irritating the neuron.  A general brain MRI can, in most cases, help rule these other diagnosis out.  After my daughter saw the neurologist she suggested a high resolution/multi-cut MRI on both sides with and without contrast.  It could be done in WI but because of the density of hospitals in Boston there would be more and newer machines with this capability so it was suggested we get it done here.  We got that before we saw the neurosurgeon, because without that what he or she could  tell us would be very limited.  While this was all happening my daughter was having side effects from the Tegretol/carbamazapine- needing to sleep 14 hours per day- hard on a 20 year old.  I spoke with an expert on medication and double checked with  pharmacist who said the second generation drug Trileptal/oxycarbazapine has a lower side effect profile and told her to tell the doctor to change the perscription.  After the switch she had fewer side effects and good relief most of the time.  Stress also was a big factor in having pain attacks so we found a practioner who help her with relaxation and self-hypnosis to keep the anxiety from the pain breakthroughts from getting the best of her.

My criteria for looking for a surgeon were the following- experience with all the surgical options (for there was a saying; if all you have is a hammer everything looks like a nail).  I was looking for someone who has done a large number of these surgeries and was involved in research and had a record of good outcomes.  I found a physician at the Mass General in Boston who met this criteria.  She would not be seen until she was seen by a neurologist and had an MRI and all the relevant information was sent over.  The high resolution MRI needed to be prescribed by a doctor so I called the neurosurgeon's office and asked them to call the MRI company out here to get her an appointment before we met with the neurosurgeon.  They were happy to help us out.

At this point let me say that it would probably be in the best interest of the UK patients to get together and try to advocate for a centralized a place to have this condition treated; even if you have to travel it is worth going to an experienced physician since this is a fairly rare condition, the more patients being seen and followed up a practice the better off things will be.  It is cost efficient too, better to have fewer beta/gamma knifes and high resolution MRI's in the hands of experienced surgeons and surgical teams who are familiar with the treatments and techniques.  

So we had the MRI done on a Monday and the appointment in Boston on the following Wednesday.  The surgeon, after taking a history with focus on the pain symptons, briefly explained the medical treatments involving drugs and then the surgical treatments available.  He recommended the microvasuclar decompression, putting a teflon pillow between the nerve and the blood vessel.  He was very specific about why he came to this reccomendation - my daughter had classic symptoms, a classic response to the medication and when we reviewed the MRI even we could see the distinct difference between the left and right trigeminal nerves- the compression was very clear.  What I am saying is each case is different depending on the symptoms and anatomy and for this reason, what works for one person may not work for another.  Because of her age I was nervous about needing the surgery done again after a few years as I had seen with the rhizotomy.  I could not find any information about it being done more than twice, and for someone in their 60's that might be o.k. but for someone in their 20's it was more concerning.  The surgeon said that the MVD had a better and more durable outcome and gave us a high probability that the surgery would be successful.  He also explained that sometimes with the surgery there is hearing loss and that they would use an ear bud and an electrode to moniter hearing during the surgery which has significantly reduced hearing loss as a side effect of surgery.  When asked if she was interested in having the surgery my daughter agreed it would be a good for her; she did not want to take medication her whole life.  He treats many patients, some who fly internationally for this surgery and it turns out there was no use in getting a second opinion as he's done around 1,000 MVDs and andother 1,000 rhyiotomies.  I didn't feel it would be easy for me to find anyone with as much experience.   He opened his schedule and said there was availablity on Saturday- that threw her off guard.  We tlod him we would be in contact with the office.  As we were leaving we met his nurse practitioner.  I asked how long she has been working with this doctor- 'eleven years' was the response.  This is usually a good sign.  My daughter needed some time to wrap her mind around the idea of surgery right away but as far as I was concerned if she wanted it why wait?  

Yes, she needed to have her head shaved a bit behind the ear and there is a scar.  It is invasive but do not fool yourself, radiation or rhizotomies may be less or non-invasive but that does not mean they are benign.  The staff at the Mass General is world class.  After surgery she was in a Neuro ICU because as a standard she needed to have neuro checks every 2 hours and be on moniters through the night.  She basicallly had her own nurse until morning.  She spent the following day in the hospital and was discharged on Monday and walked across the street with me to go out to lunch.  She was off heavy pain medication after a week and taking valium at bed time for another few days following to help with neck spasms. She drove with me 9 days later to NY to see a show (because when your daughter who is going into brain surgery says she'd like to see a show you do it if it's possible). Fifteen days after surgery she flew back to Wisconsin to begin work part time.  She started tapering off the medication 13 days after surgery and appears to be doing well.  We realize are truly fortunate to be well insured (we do pay a hefty monthy bill and have a high deductable) and have access to some of the world's best medical care.   All this may change under this administration as our surgeon's research funding comes from the NIH- (government funded) and with the current proposed cuts to both research and drastic reductions in health care spending things may get tight as hospitals vie for significantly fewer dollars.  We hope all of you struggling to figure this out are able to get the support that you need.   Check with the facial pain association and read their news letters.  There is a lot of helpful infomation out there.  You are in our prayers.   

my husband has suffered from TN for about 10 years.  He was put on prescription after prescription...the only help he ever got was from prednisone ( which is a steroid) but as soon as he stopped it as that can not be taken very long.  His pain was atrocious and it interfered with his entire life as sometimes he would have four flare ups a day- other times he would have one.  Some were hours long- others 20 minutes. Sometimes that pack that you heat in the microwave would help lessen the pain!!  Out of desperation, as nothing was working, I started looking up natural substitutes for these medications.  I found DONG QUAI ( sold at a health food store) was a substitute for prednisone and CURAMIN helps to control pain and inflammation.  After some trial and tribulations with experimenting with a salve called comfrey cream ( a great muscle rub- but did not help the pain of the TN- but still not a wasted purchase so that is good), then we tried spraying on magnesium flakes and letting that set on his legs, arms, and stomach one hour every morning to absorb into his system, then we tried a mixture of Organic cayenne pepper and coconut oil mix to rub on the painful area ( you can tell we were desperate) he tried these two pills three times a day....Dong Quai and Curimin (extra strength).  Well lets see, he took them three times a day and I would say within 5 to 7 days he stopped experiencing flare ups.  We proceeded cautiously as, really, who would believe this would help...so not to tell anyone he was getting relief- they would think we are crazy.  But one week went by, two weeks, three weeks...I know I started to relax a little bit.  It has probably been since February or March....no flare ups.  He has cut the pills back to two a day.  He has had blood work two times as he told his doctor what he was taking.  His blood work is coming back fine...actually great.  I hope this will help you and others.  I know one thing can help one person and not another but I know he was suffering and myself right along with him.  Our entire life was controlled by this disease.  If you or five or ten or one hundred people, or more tried this and it helped them as it has my husband, it would be wonderful.  It is a horrible debilitating disease.  No One should suffer and go through what I watched my husband experience.  Good Luck!   

Another question, the possible TN is on my right side of face anyone experienced a bad blood shoot eye