Who else has made a trip to the ER?

I don't know what else to do, my pain has been so bad for several days now, I am thinking about going to ER. I have bi-lateral atypical and typical trigeminal neuralgia, mixed with glossopharyngeal neuralgia and a current molar infection. My R half of face if numb and it hurts to talk and hard time swallowing. I AM IN SO MUCH PAIN! What is the most likely scenario at the ER? I hate going due to bad experiences in past trips from migraine issues. I feel so helpless.... I am dizzy and nauseated because the pain is so intense, and it is not even responding to baclofen and lortab 10mg.

I was actually diagnosed in the ER by a neurologist. So my experience was fairly good because the ER doctor knew and admitted he had only seen one other person like me. I was shot full of opiates and observed. If that did not work, they were willing to try something else. What that was I don't know. There is a form you can fill out under the FACE PAIN INFO tab, and then doctor. You fill it out and take it with you. Most doctors are trained to get rid of the pain or try to treat it.

For me it was a waist of time. Came out still in TN pain after getting oxi which I could of taken at home. AND a 1$1200 bill from the hospital!

I've been to the ER so many times the nurses joked that they should set up an apartment for me there.

Sometimes the pain gets out of control and as doctors, especially ER doctors, are aware, interveinous opiate intervention must be done to break the pain cycle.


I've been to the ER four times in four months. They know me by name, but when I have a pain attack it usually increases my blood pressure to levels as high as 264/180 (that was my last one) so ofcourse I get admitted right away. I try and tell them everytime that the pain will go away if they just give me an i.v. of morphine but I always have to go thru them doing a cardiogram and checking for potential heart attack. But, now that they know my condition it is much easier since once I am given the pain killer my blood pressure drops to normal in minutes. The last time I was there I was given " dilaudid " which is much better than morphine. It took the pain away right away and I was able to go home and get some rest. I was lucky enough that one of the nurses actually suffers from TN, so he was quite helpful. I definetly think you should go to your nearest ER instead of being home feeling desperate and miserable. I have only had good experiences with the hospital visits.


I'm sorry, but your information is incorrect when you made the claim that these doctors have "pretty much 100% success rate with TN patients".

There is no such thing as even close to a 100% success rate in any area of Trigeminal Neuralgia treatment.

It's dangerous to promote treatment to others without proof. There is no One-Size-Fits-All where TN is concerned. What may work for some will not work for others. What are the statistics on TN being cause by cervical problems verses damage to the Trigeminal Nerve? Patients with TN caused by damage to the Trigeminal Nerve would not benefit from any type of physical therapy.

Kathy, I'm happy to hear of anyone's improvement in pain. However, I must echo Gloria's concerned and accurate advice. You unfortunately have your physiology mixed up. The trigeminal nerves come nowhere near the discs of the cervical spine. They branch out of the brain stem just below the cranium, above the spine. Compressed disks in the spine do not cause TN, and realigning them won't cure the disorder.

From past correspondence and conversation with neurosurgeons, I can say with some confidence that first emergence of Trigeminal Neuralgia is fairly often associated with a whiplash injury in automobile accidents. The mechanism is believed to be the stretching and twisting of the neck, bringing vascular loops into contact with the surface of the nerve for perhaps the first time. When cervical chiropractic or physical therapy are successful in correcting facial pain, it may be because "adjustment" again opens up a distance between the surface of the nerve and nearby blood vessels.

Likewise, be advised that TN is not a variety of headache. It is quite a different and distinct form of pain.

Go in Peace and Power

Red Lawhern, Ph.D.

Resident Research Analyst, LwTN

Kathy said:

Hi, I am sorry your pain is so bad. I have been to the emergency room once. The doc gave me morphine and when I said everything is numb except for what hurts, could she give me a shot of lidocaine in my face? The doc said I think you have trigeminal neuralgia, gave me lyrica and said the pain would stop in about 4 days. I might need more than 50 mg. But it worked. In the mean time I took the green herb to take the edge off until the medication started. I will say that when the pain subsided I weaned myself off of lyrica, but the pain returned several months later.

I've had two surgeries, gamma knife which worked for about 6 months, then MVD, which left me deaf in one ear and I still have pain.

Just two weeks ago I went to the headache institute in San Antonio. I saw a neurologist there and also a physical therapist who pretty much works wonders. I have learned how to decrease the pain through certain exercises (pain comes from bulging cervical discs squashing the nerves, and muscle tension squashing the nerves) and I also am learning which movements I make that will set off an attack. It is taking me longer than most patients to get better because of two surgeries and bad form habits. The good news is I am down from 450 mg of lyrica to 50mg.

If you already know what you have, my suggestion is why waste time and money going to the emergency room? The neurologist, told me if I have a headache why not increase the klonopin that I've been taking for years. It seemed to work for me today because I had a terrible attack this a.m. My husband noticed that my body was in a very awkward position while I started to cry in pain. I was on the floor petting two dogs with my head extended way out in front of my body, while also leaning my head down. You may want to get a neck collar to help you, not with decompression but to train yourself to notice your tiny movements that set off an attack.

Along with the medication I lied down with an ice pack, on my side with my spine and neck as horizontal as possible, have your significant other look at you while you do this to make sure your head is not falling back or tipping upward. Try to look straight ahead forward. Do this every hour or two.

Think about when we eat or brush our teeth, that can set off an attack because the position your neck and lower back is in when you do an activity that sets off your pain. I know it sounds kinda crazy, but it is working. A decent book I picked up is called The Back Pain Book by Mike Hage. There is much more that goes into this whole thing that I am learning about. Talk to your doc about a small dose of muscle relaxer like flexeril, or an anti seizure med like lyrica or klonopin. That may help reduce the pain. Topomax helps for me but only if I actually have a headache, otherwise it will give me one. go figure.

My suggestion, get your neck and spine imaged and see if you have any discs out of whack. Then find a physical therapist that knows how to treat TN and other head and glosso problems, not a chiropractor, I've had one make me worse.

These doctors I went to have pretty much 100% success rate with TN patients. And I am convinced I am on the right track now. I'll be going back after the first of the year to learn more.

Best to you.


GO!!!!!! My first trip this month was a big fat waste of time. My second trip I was armed with Red's form, a picture I drew and a stuffed duck in my mouth. (It was, new and the dog didn't have a chance!) I was seen immediately and after begging to be admitted psychologically I felt some relief.

The put me on IV dilauded that seemed to come me down, anti-nausea medicine, and liquid steroids. It wasn't until the third dose of dilauded that I started to no feel my mouth at all. Now my pain comes in waves so and lasts for max maybe 20 minutes to 1/2 hour so it is somewhat confusing when I am asked my pain scale when the attacks are dying down So I have gotten to the point of giving two answers. 1 pain scale response for in betweeen attacks and another for during attyacks.

Also I haven't tried this but you could faint and the ER registration desk after throwing all your documents at them. That could really work. And don't go to a really busy hospital if possible.

you DESERVE relief and that's all there is to it.

Thank you everyone for the reply. I did try to go Sat night but when I got there the receptionist treated me pretty bad so in stupid frustration I went back home. However, yesterday after morning church service my pain was so bad and I was so exhausted I finally went to the er. They processed me right away and the doc that treated me put me on i.v. dilaudad and ativan. She ran blood work, which came back with an imbalance in my white blood cell count and my CRP and SED rate were both eleveated as they have been for five years. I told her about the white spots on my brain that showed up in my last MRI and she said that I need to push for further evaluation of possible MS and most likely Lupus. Also, she sent me home with pill form dilaudad and valium for two days and today I have an apt with my primary doc to get referrals to wherever I want/need to go. Now, I am in a frenzy trying to research the best docs to see for lupus testing, MS testing, and treatment for bilateral TN/ATN with glosso. Whew.... At least my pain is finally lower than a 10! She said that in no way was my infected tooth to blame and even did a FULL health history- which is more than most primary docs do! I wish she had a private office, she was an excellent doc. She said if she could she would have referred me to Stanford or Berkeley, but she only practices in the ED. Thanks again, Hugs to you all!

Kathy, I'm going to go through the site link you provided, with a fine tooth comb. I'll report back what I find.

Initially, I must reinforce Gloria's appropriate concern. We should be prudently suspicious about any therapy that is supported by nothing more than patient testimonials without the use of randomized controlled trials. As far as I am aware, Chiropractic techniques have never met that criterion. This is true not only for TN but for other medical problems where the less scrupulous in the so-called "alternative and complimentary medicine" movement have made widely publicized claims. It's easy to assemble a few testimonials, by cherry-picking results or simply paying off a few people to speak from a script.

I realize that you may find my attitude (and Gloria's) on this subject frustrating. But there is an underlying reality in these issues that is dangerous if denied: there are no 100% one-size-fits all answers for this class of pain disorders. Period, no exceptions. Demanding or expecting that there are 100% solutions can be a prescription for a serious depressive crash in patients whose lives don't turn out that way. It's really not okay to lead people into such bear traps.

I'll get back to the thread in a few days. Please feel free to ping me if I forget.

Regards, Red

bhamilton...hope you have some better answers to your difficult situation. I am new to the site but read with interest all the responses on the issue of ER visits. My neuro today just informed me that "yes go to emerg" if you are having unbearable lasting pain, unable to talk or difficulty swollowing. This believe it is news to me. She said have them give you morphine and at least they can put you out and you won't feel the pain. Interesting and scarey but I pointed out that process could take hours as I sit in a waiting room. Her response was to suggest that I could try pill form of the drug but of course I don't have any in my hip pocket. So dilauded is a drug I've never heard of and will ask about that.I have downloaded the form on the site on attending physcian hoping to be a little prepared but I'm also putting on my GP's file at soon as possible (at the front) and hope that should I need this ever it will help. So much to learn but I am immensely gratefuly to be hooked up to this support site. Do others agree IV drugs are the way to go?

ooh, PLEASE let there be no ruffled feathers, (sort of a pun based on my sucking duck), I say what ever works for you. Of course we need all the information we can get before jumping in. Based on the little bit of time I have had with this disease I certainly don't pooh-pooh anyone who is willing to try anything to stop the pain. We all have our reasons for trying different methods of pain removal. From the research I have been doing, (Red, I realize you are the resident researcher but you have to admit there are many, many, many different results out there), I find it difficult to understand what might work and what might not. I am pretty sure I will not base by decision on % that is for sure. AT THIS TIME I believe I will base my decision on what my heart tells me to do.

The only thing I can say is this: I visited my first chiropractor in the early 1980s, (not for this condition but for the nerve pain I was having in my arm), It was also my last visit. There were 2 reasons. 1) I was not willing to be turned and twisted by this person's arms around me. 2) When his talk turned to being able to cure a host of other conditions from ear aches to appendicitis.

The only reason I have been seeing my current chiropractor for the past 12 or so years is because I knew her from being a customer of mine. She is soft spoken, trustworthy, and uses the activator method. She does not spout what else she might be able to fix unless you ask her.

She was able to stop the arm nerve pain so many years ago I have lost count. It has never returned. I guess this is anecdotal but it worked FOR ME. Some things she works on and the issues returns, some things not.

In closing, if your going to report on procedures I believe it important to give the % and who they are from. Then let others make their choices.



Kathy and Phoebe --

It is not my purpose to get into a public hair-pulling match with either of you on issues of your personal experience of medical therapies. Your individual experience is, after all, your experience. This isn't an issue of who is right or wrong.

The balance I am striving for is to inform other readers that some techniques offered by so-called Complimentary and Alternative practitioners don't appear to have any science (or in some cases even documented data) beneath them. And some are clearly fraudulent. The 100% relief claim for TN is one of the more reliable indicators for fraud. Claims that contradict or confuse what is known of the physiology of the human body should also be looked at skeptically.

That said, we all have a right to pursue the possibilities for improvement. "This worked for me" is -- with rare exceptions for known frauds -- valid. The place where I get off that trolley is when people try to generalize from such a sample of one, to advocate for their chosen solutions with other members. To support advocacy, there needs to be valid data in larger samples, and a record of published results subject to professional peer review and evidential oversight. "This worked for me and it will work for you" isn't good enough (and please understand that I'm not accusing anybody of having phrased their opinion in exactly this way).

In all of this, I understand and accept that I don't set policy for Living with TN. Only the owners do that, sometimes consulting with the moderators, of whom I am one of several. Mine is not the only voice here and I would never wish it to be. The value of a forum like this one is very often the support and information that members bring here for each other. When I can lend the insights of 45 years of experience in scientific analysis, and 16 years of advocating for better patient outcomes, I will try to do that -- with courtesy. Sometimes I will write with passion, for I've seen people hurt badly by their own wishful thinking and the manipulations of financial predators wearing white lab coats and preaching snake oil and nonsense. I hope I shall be pardoned for that passion when it may contradict the passionate concerns of others. Finding truth and healing isn't about me or you.

Hi bhamilton

I have been looking through this and see many kind members have offered their help to you. What I would like to know is have you had any relief, help or lessening of pain yet? Please do let us know, we all seem to have gone off track a little in this thread. It will happen when we are all reaching out to help. It just shows how many members care about others.

While I am almost sure I would eat a stray dog to get out of pain (no I don't mean that! just trying to show that I do understand) I always like to keep a little cautionary note in the back of my head, even with (or especially) what a Dr recommends. I think a lot of us feel like this. I remember when I had a life threatening illness I put myself on a diet claiming a massive success rate in keeping sufferers alive even when their tumors were huge stage 4, In fact the author claimed hers went completely in a week. I made myself so miserable sticking to this routine until my husband told my oncologist. He had a long talk to me saying I was having very expensive therapy that was known to be the best in the world for that disease. If the NHS knew of a diet that could do the job better they too would have prescribed it for me. The treatment I had has kept me alive for 8.5 years. I discarded the diet and ate in balance.

So what am I trying to say with all this? Well just that I advocate everyone, like has been mentioned here, to do their homework before trying a treatment and make a balanced judgement. It is exceptionally hard for us guys with TN/ATN as the desire for relief is immense as the pain is so awful. I hope whatever type of treatment you all choose is effective and safe for you. My heart goes out to you all.

As I mentioned earlier I did end up going to the er and I was sent home with dilaudad and valium. The dilaudad doesn't help the pain but for some reason the valium does, so I am only taking that along with my reg meds. The next day I went to my primary doc and she is sending me to Standford Neuro research clinic- based on my abnormal blood work and complex neuro history. I thank everyone for their input. And, I have to say that in some ways I agree with what everyone has said on here.

You see, I'm not only a patient of ATN/Tn bilateral with glosso, but I also usffer from "unspecified connective tissue diease", hypothyroidism, protracted triple complex chronic migraine, SI joint dysplasia, GERD with polyops, insomnia, and benign liver tumors....

So, my point is that yes- I 100% believe that all and any type of medicinal approaches MAY help at least one person somewhere. I also am a student of anatomy/ physiology with a 6 year medical background that includes research into rare & complex diseases/disorders (which is odd that I am now a patient and not just a student...) I know we all know a lot, and I like a good discussion. I appreciate what every one of you offered...

I take some meds, get massages, do acupuncture, have had surgeries, get chiropractic adjustments, see a DO, take vitamins, change my diets with the blowing of the wind... Life for me isn't just TN it is also three other chronic pain conditions, so I am always open to any and all advice.

I believe that God designed our complex bodies and God provides relief in the end... It is the here and now I am in search of. Many blessings to you all, and prayers that we can all get at least a bit of sleep tonight ;)

I'm so sorry you're in a flare up of TN pain right now. My heart goes out to you. I've gone to the ER three times with horrible TN pain. The only thing that worked for me was an IV of Solumedrol. Even Morphine didn't touch the pain. I wish they would give priority to facial pain patients, but unfortunately, you have to wait your turn. The last couple of flare ups I was able to have an IV nurse come to my home and give me the infusion. There was quick relief with the Solumedrol and it's definitely my "go to" pain relief medicine.

Hope you're hanging in there and find fast relief! Thinking of you. :)

To follow up on what Red said, when a medical provider tells you that something has a 100% success rate, you need to be very, very wary. As a lawyer, I will tell you that when a doctor tells you that, he faces a real problem with malpractice. A treatment provider cannot guarantee success. And if he does, then he opens himself for a big ole fat lawsuit when it does not happen. That's why a reputable doctor will tell you that things have a "high" success rate, but never a guarantee. If his malpractice insurance was aware of this, he would also be dropped like a hot potatoe.

So yes, when a medical professional tells me that, I run for the hills.

As a researcher myself, I know that 100% only means death and taxes.

Thank you for that Lisa. So good to get some Legal clarity on issues which can concern so many!

And as a lawyer, I'm sure the taxes part are subject to negotiation... {:-) Be well, Lisa (I couldn't resist the ironic joke).

Thanks for your input,


I have been twice and both times, it was terrible. First time was by ambulance and the ER drivers were nice but had no idea of what TN was. The Dr. and nurses had no understanding of it either, it was very scary. They sent me home with increasing my tegretol, which after calling my neurologist and him telling them to do this. I could have stayed home and saved the money. A lot of it! The 2nd time, they gave me dilaudid, which I am highly allergic to.