Long post.....please read

[Tia1]

I seem to be a jackpot winner of things that suck!

I made an emergency next day appointment with my neurology office for last Friday because I had spent the better part of the week with face pain, (dental ruled out) finally I couldn't take it any more.

I was diagnosed with trigeminal neuralgia. My symptoms were pretty classic, except I've never had it so long or so intense before. In fact, my pain level was down when I visited the doctors office and they started it again by touching my face and my pain level quickly started at a 6 and by the next mourning was a 9.

Neurology assistant upped my current meds baclofen and keppra significantly, preferring not to add a third medicine in the same class, which made sense to me a t the time, but seeing spasms and increased pain, she also added a medrol pack.

I tried to go about my day, but when you are in a certain amount of pain, you simply cannot! I made it through that day, but ended up at the er before 6 the next morning. I took the paperwork from the neurology appt. explained that the medications WERE NOT working at all and that my pain level was at a 9.

I also mentioned that I felt that I had a dental issue brewing because before the pain got so bad, I had tried flossing and extra brushing, picking etc. thinking that there had to be something that could help the pain. At this time I can't even touch my face.

ER doctor told me that my symptoms were classic to TN, and that I was being adequately treated. By this time, I'm actually feeling worse, desperate, for relief, I ask if it could be dental and he says that they don't take care of that in the er. I have tears running down my face, I can't sit, or stand still, now my nose, eyes and a new headache is there. Probably because I'm crying. I'm also trying to do a controlled cry because every movement of my face is making it worse.

He tells me he will write me a prescription for an antibiotic and a pain pill, which I can't imagine it working. I felt like I needed someone to knock me out or give me something to help control the pain. I hurt so bad. He orders an ekg I almost refused, because I couldn't understand how that would be helpful, but I didn't.

The discharge nurse came in and I could see that she felt bad, she ask me if I had told the doctor how bad I felt. She gave me the two prescriptions and I took the antibiotics and left a note on the pain med one for the doctor, letting him know that "I came in for help, not drugs" I also let him know that in the 1 1/2 hrs that I was there I felt so much worse. I gave it to the nurse and asked her to give to the doctor. The nurse even cautioned me about driving with the pain med. I wanted to scream how could the pain med be worse than someone with a pain level of 9.

I did not make it home before I was on the phone with the neurology dept. on call. I could not take the pain. Could not think about anything else. They called in a prescription for klonipin? I made it home to DH, who didn't realize that I wasn't home. He tried to comfort me as best as he could, but the remedy at that point was only going to be getting my face pain under control.

He went to fill my prescription once the pharmacy opened an hour and a half later and by this time, what are the odds. I now have face swelling that increases pretty rapidly, so back to the er, I go. Finally they consult my neurologist, give me tegretal, a stronger antibiotic and a pain med in the er. My cheek continues to swell, No visible abcess. They discharge me, Still in pain, no scans, a different er doctor who is sympathetic, but tells me nicely that I have to deal with it on my own and follow up at the dentist, and with neurology and they would help me.

Is this appropriate care?? I did not stop crying the entire time that I was there and was in so much pain, I surprised myself by being able to drive myself home. (short distance, no traffic) the tegretal did help and I took the klonopin for breakthrough, but honestly, I couldn't concentrate on all they told me to do. No one told me to stop taking the steroids, or with the exception of not taking baclofen with the klonipin, no other directions where given. I stopped taking what I considered meds that were not a priority because no one else told me and I still need my kidney and liver.

I could not go to the dentist the following monday, due to pain or to my neuro appointment, due to pain and swelling. I could not let anything or anybody make me worse. Probably not the smartest thing to do, but when your in a certain amount of pain, do people expect you to be able to think clearly? I feel like I went into survival mode and I am usually reasonable, I can imagine a very bad outcome all together.

And to add injury to insult, they gave me the wrong dosage of antibiotic to treat my infection. 150mg ( they don't even make them anymore, although pharmacy had almost the entire prescription on hand. I was wondering why things were not clearing up fast. Can't even imagine what this has done to my teeth, mouth, jaw. Finally got the correct dose of 300mg yesterday, thank God! A week late.

Thank you for reading this very long post. I am hoping to find the best way to handle this in the future and if there is something that I should/could do differently, I want to know. I do plan to get with neurologist to have a game plan for future TN symptoms.

I just feel like a dog would have gotten better treatment!!!! I really was in an incredible amount of pain, but am quiet spoken, how do I get doctors to understand this? What can I do?

[Jules A]

First I'm so sorry you were in such pain, this disease is hideous! That said you asked for advice on how to best handle this in the future and while nothing is going to make a situation like this markedly better I'd like to offer the following suggestions:

1. Call the neurology dept before going to the ED because they are in a better position to help you and if they recommend you go to the ED can call ahead and brief the ED providers on your condition.

2. Include your husband in what is going on as driving self to the ED isn't a great idea in general and especially if you are so distraught that you can't remember what they have advised or have to drive yourself home after receiving additional medications. It doesn't make sense that you are able to drive your self to the ED but not to your regular appointments where most MS stuff should be handled.

3. Adjust your expectations. It does not sound like you were treated poorly in the ED. There is truly only so much they can and should be doing which is triage and disposition. After assessing for a lack of life threatening or emergent to the point of needing inpatient hospitalization conditions they offer a temporary solution such as a minimal amount of pain meds, antibiotics and recommend follow up with appropriate out-patient providers. Unfortunately this type of pain is not considered a life threatening emergency and really should be handled by your regular providers or possibly consult pain management. You are already on a complicated med regimen that together can contribute to negative outcomes so in my opinion being conservative about prescribing additional medications which might further depress respirations and are unlikely to provide much pain relief anyway is thoughtful care.

I hope you are feeling better and definitely talk to your neurologist to get a plan in place in the event something like this happens in the future.

[sardi_g]

So sorry! I don't know anything worse than being in that amount of pain. Is there still swelling? What was that from?

Ugh, doctors. Just remember not all of them graduated in the top 10% and that doesn't even assure the best knowledge/care. I do respect them in general but they have been wrong so many times. I try to be my best advocate but sometimes get taken by surprise and forget to be assertive. You shouldnt have to 'be on top of it all' when you're at that pain level. But you did pretty darn well considering.

It's smart to have a game plan for next time. Don't expect er docs to have much specialized knowledge. How to be firm and assertive without causing defensiveness that is also something to consider. Let's see what others say but excellent idea to be prepared.

side story: went to er bc my foot was tingling and/or numb at times. Was told I should get a volunteer job.

later saw a highly reputable gp - the 'doctor to the doctors' at wash u. complained entire left side was numb. blood test showed vit d level at 8. He was so happy he found the solution. "take 5,000 vit d a day and you'll feel much better! come back in three months"

I'll save the optic neuritis story for another time this is your thread.

Sadly one neurologist said that there are many many doctors with sexist views towards female patients, probably thanks to freud and the 'hysterical hypothesis'. We can't generalize but we can be informed of the potential for this and be as prepared as possible. I hope it all works out!

[Tia1]

Thanks for the reply. My initial visit to the er, I felt worse upon leaving and the er is literally in my neighborhood. I could not drive on the highway as my attention was more on my pain than the roadway. I do have an appointment with the neuro on Wed. and will make them the first call next time. (praying that there is no next time) It makes perfect sense, now that I am not out of my mind with pain.

Once again thanks for your input.

First I'm so sorry you were in such pain, this disease is hideous! That said you asked for advice on how to best handle this in the future and while nothing is going to make a situation like this markedly better I'd like to offer the following suggestions:

1. Call the neurology dept before going to the ED because they are in a better position to help you and if they recommend you go to the ED can call ahead and brief the ED providers on your condition.

2. Include your husband in what is going on as driving self to the ED isn't a great idea in general and especially if you are so distraught that you can't remember what they have advised or have to drive yourself home after receiving additional medications. It doesn't make sense that you are able to drive your self to the ED but not to your regular appointments where most MS stuff should be handled.

3. Adjust your expectations. It does not sound like you were treated poorly in the ED. There is truly only so much they can and should be doing which is triage and disposition. After assessing for a lack of life threatening or emergent to the point of needing inpatient hospitalization conditions they offer a temporary solution such as a minimal amount of pain meds, antibiotics and recommend follow up with appropriate out-patient providers. Unfortunately this type of pain is not considered a life threatening emergency and really should be handled by your regular providers or possibly consult pain management. You are already on a complicated med regimen that together can contribute to negative outcomes so in my opinion being conservative about prescribing additional medications which might further depress respirations and are unlikely to provide much pain relief anyway is thoughtful care.

I hope you are feeling better and definitely talk to your neurologist to get a plan in place in the event something like this happens in the future.

[Tia1]

I think that the swelling came from me digging in my mouth. It sounds so stupid, but I was determined to get whatever was causing that horrible pain.

I guess the doctors were not horrible, but not one of them considered my pain level. Just because there is a name for it, doesn't make it any easier to bare. It may not have been life threatening to them, but to me....it was.

I want to hear your optic neuritis story, we never know how someone else story can equip us for this battle.

I hope that you are recovering from your numbness.

So sorry! I don't know anything worse than being in that amount of pain. Is there still swelling? What was that from?

Ugh, doctors. Just remember not all of them graduated in the top 10% and that doesn't even assure the best knowledge/care. I do respect them in general but they have been wrong so many times. I try to be my best advocate but sometimes get taken by surprise and forget to be assertive. You shouldnt have to 'be on top of it all' when you're at that pain level. But you did pretty darn well considering.

It's smart to have a game plan for next time. Don't expect er docs to have much specialized knowledge. How to be firm and assertive without causing defensiveness that is also something to consider. Let's see what others say but excellent idea to be prepared.

side story: went to er bc my foot was tingling and/or numb at times. Was told I should get a volunteer job.

later saw a highly reputable gp - the 'doctor to the doctors' at wash u. complained entire left side was numb. blood test showed vit d level at 8. He was so happy he found the solution. "take 5,000 vit d a day and you'll feel much better! come back in three months"

I'll save the optic neuritis story for another time this is your thread.

Sadly one neurologist said that there are many many doctors with sexist views towards female patients, probably thanks to freud and the 'hysterical hypothesis'. We can't generalize but we can be informed of the potential for this and be as prepared as possible. I hope it all works out!

[Jules A]

The discharge nurse came in and I could see that she felt bad, she ask me if I had told the doctor how bad I felt. She gave me the two prescriptions and I took the antibiotics and left a note on the pain med one for the doctor, letting him know that "I came in for help, not drugs" I also let him know that in the 1 1/2 hrs that I was there I felt so much worse. I gave it to the nurse and asked her to give to the doctor.

My guess is this probably hit home with him. Most physicians would feel terrible if they made a patient feel judged as a drug seeker who in fact was not. Again there isn't much else I can think of that might have helped but I would bet he didn't mean to make you feel worse and took pause when he got your note. Maybe he will spend a bit more time with the next person even if he isn't able to do what they are hoping? Perhaps that would be one positive that came out of this horrid experience?

[Tia1]

He actually came in an apologized. He said that if he had thought it was drug seeking behavior, they would not have prescribed anything. By that time my face was swollen and he could see how much pain I was in. I appreciated him coming in, I thought he was gone for the day.

The whole experience could be anxiety provoking. I would have never imagined being left in that kind of pain. I will definitely try to have a plan so that this never happens again. Who would think that MS can cause all this. (sigh)

Thanks again!