Is anyone else’s neurologists refusing to give pain meds? This pain is unreal. I cannot hardly eat or talk and it is miserable. Is it normal for them to refuse to give pain meds?
NO WAY???? I cant believe this. Where are you from? Facial nerve pain is horrendous and ruins lives, these neuro's who think they understand are making me so angry. Get a second opinion asap. Helen x
Is there any gp or dentist that will call these in for you?
Lidocaine face patches
if mouth hurts inside
lidocaine mouthwash
these can make life almost bearable till you get a real doctor!
And yes, there are a few here that have been treated like they were med seeking.
You can try ER?
You NEED a neurologist WITH patients that have TN. Even if you have to drive further! Call and ask before you make an appt. and waste time. Not every neuro even knows what TN is.
I have a mouth spray called xylocaine x
Yes, my neuro refused to give me pain meds for five years. He felt that because TN is nerve pain that opiates/narcotics would be useless against it. I was lucky in an unlucky sort of way because I also have a type of rheumatoid arthritis and fibromyalgia, so my rheumatologist prescribed pain meds.
A month ago, as I suffered from 24/7 severe TN pain, I had tried every TN med available & after explaining to the neuro that if nothing else, the pain meds allow me to distance myself from the pain, he said he would prescribe Fentanyl patches.
I would definitely see another doctor, even if it is your regular doc. Pain meds can give relief for some of us.
Take care,
Pam
My neurologist refused them as well statinh that pain meds don’t help nerve pain but I have a burning sensation on the right side of my face where my TN is and pain medicine was the only way I got relief! This pain recently came back with a vengeance and now the pain medicine doesnt help at all. My dentist gave me pain medication and the er as well.
Yeah it all only has limited use. Nerve pain is so complicated to manage. X
Pam, sounds similar to my friggin journey with TN and TMJ, with arthritis and possible Fibro. I do get some pain meds, Flexeril to relax my jaw from TMJ and T3's for arthritis pain.
Do you also take an anticonvulsant?
My GP is only focusing on the Fibro and keeps pushing those pills on me, I went through this song and dance with a previous GP 5 years ago and I was a mess and said no more of those drugs because I kept having serious side effects from them, I have anxiety/depression and these drugs apparently work on that and on Fibro pain. I can live with the Fibro pain and I believe the so called anxiety/depression is just what everyone has in this crazy world and has tons of pain to deal with etc. Now that my life is calmer (only because of God and the TN did I give in and make my life calmer) LOL funny how things work out. Anyways I am up against a Dr/GP who said at my last visit that he is determined to convince me to take one of these meds, the last one he prescribed was similar to Zyban and if it wasn't for my one Pharmacist who informed me that it was a type of Zyban I would have had a terrible reaction (just as I did years ago) which I had told the Dr. a year 1/2 ago when I became his patient (should be in my file) when I told him this after he asked me how it was working, he literally just shrugged it off!!! I landed up in emergency when I used it last to quit smoking!! Can you believe this guy!! So now I'm going to have to find a new Dr./GP. I have an appt. with the Chronic Pain Centre on Monday, maybe they know a good one, but Dr.'s are getting harder to find here, mostly walk in clinics. :( He doesn't like the muscle relaxer Flexeril that I have been using but I told him that when it gets super bad in my jaw, Flexeril is what works not Baclofen as he would like me to use!!
I'm starting to think he's getting some (kick backs) for these drugs because he says he doesn't like the side effects from Flexeril but if any of you watch TV or have looked into the side effects of these drugs, the list is a mile long!! They are all antidepressants!!
When are these Dr.'s going to listen to the patient and not text books or the Pharmaceutical salesman/woman!! I also have T3's but all that Tylenol is bad for a person, I used to use just codeine and I think I should go back to that or maybe a mix.
At least this Dr. will give me those prescriptions and refills.
My daughter is on stress leave and seeing a Psychologist and she and my daughters Dr. are insisting she use antidepressants (they hand this stuff out like candy) she got it filled but with no intentions of taking it. She has every right to be upset with an abusive ex whom she still has to deal with in the courts. These pills are addictive, the last one I was on for only 3 months, took me 3 months to get off of!! I'm proud of her to work through this crap without antidepressants, without putting a bandaid on it and calling it all OK!
Sorry for the length of this! Just gets me sooooo mad!! Pam what you experienced with this Dr. is just typical it seems!!
Do they think we're just a bunch of junkies who want pain meds for kicks?!?!?!?!
I can prove that I don't take my low keyed pain meds all the time, nor do I take all of the Gabapentin daily, you'd think that would be to my credit when I ask for something stronger when the TN pain comes and I'm desperate for even the tinyest bit of relief!!
I only managed to get a handful of T4's while I waited for oral surgery to pull a broken tooth that had lost the filling, 2 1/2 months I had to wait!! I lost 10-15 lbs which was awesome...lol.
When I told my dentist about TN he knew that with the TN and from how sensitive to pain I was in 2008 that pulling my tooth any other way than IV sedation would be cruel!! How does this dentist know this and yet my GP doesn't????
So my Dr. like yours Pam will not even consider other pain meds for me as they are highly addictive but constantly pushes the antidepressants that can/may provide pain relief for the Fibro (they are daily pills that are also highly addictive) that I don't really believe I have and my last Dr. didn't either (he moved out of Canada) and over the years the arthritis is rearing it's ugly head so much more that you'd have to be blind not to know it's arthritis!!! The lady at the ultra sound could see and feel it behind my knees (just one of the places) and shook her head as to why he ordered an ultra sound!! Not too mention the Osteoarthritis, the ankles and hands and fingers. Wow just by writing this I am getting more convinced that I too need another Dr.
But no higher pain meds for that!!
Best of luck to us both to find a knowledgeable Dr. who does not have the blinders on! :)
Cheryl,
Liliacatnap said:
Yes, my neuro refused to give me pain meds for five years. He felt that because TN is nerve pain that opiates/narcotics would be useless against it. I was lucky in an unlucky sort of way because I also have a type of rheumatoid arthritis and fibromyalgia, so my rheumatologist prescribed pain meds.
A month ago, as I suffered from 24/7 severe TN pain, I had tried every TN med available & after explaining to the neuro that if nothing else, the pain meds allow me to distance myself from the pain, he said he would prescribe Fentanyl patches.
I would definitely see another doctor, even if it is your regular doc. Pain meds can give relief for some of us.
Take care,
Pam
Unfortunately, for those of us with REAL PAIN, there are multiple hurdles we must jump. First, all of the junkie-drug-seekers (who abuse the very meds that prevent us from jumping off a cliff due to TN) have caused a problem within the whole prescribing and pharmaceutical system. They have had to alter drug formulas so that the junkies can't crush them to smoke them or do whatever else they do with them. This has actually made some of the meds less effective than they were previously. Secondly, the doctors are leery that everyone is a drug-seeker. Third, compound that with an ignorance about TN and the result is that the legitimate patients like us wind up suffering. Best advice I can give you is to arm yourself with information from the resources on this website and TAKE IT WITH YOU TO THE DR. Some will get offended (THEY are the Doctor/God, you know). But the really good ones will be receptive to learning about something that they might not encounter regularly.
They all say that pain meds don't help nerve pain, but..... when nothing else works....it at least makes life bearable by dulling the pain. Best of luck to you...and I hope you can find a good neurosurgeon "up North".
Healing Vibes to you :)
Thanks for the info on what has happened to pain meds due to junkies. Did not know that.
I think I should print something off for my orientation on Monday with the Calgary Chronic Pain Centre, waited a year 1/2 to get into that. Then an appt. with my Dr. and I will see if he is receptive or not, if not, it's time to move on.
Cheryl,
Yes! Definitely arm yourself with printed information from this site. All of the links and articles are from referenced medical literature...not just internet junk. There is also an interesting article about being told it's "all in your head". You should definitely read that one. It can be found on this site's main page under the FACE PAIN INFO link and then MAKING A DIFFERENCE link.
And definitely take the Facial Pain Test. It will give you your results and you can print it out and take it with you.You have waited a long time (God love you) for your appointment...go prepared & armed with info. Pain clinics are often ignorant about TN... I know from experience (sadly). Good luck & keep us posted.
Inquisitivegirl said:
Thanks for the info on what has happened to pain meds due to junkies. Did not know that.
I think I should print something off for my orientation on Monday with the Calgary Chronic Pain Centre, waited a year 1/2 to get into that. Then an appt. with my Dr. and I will see if he is receptive or not, if not, it's time to move on.
Cheryl,
Thank you to everyone who replied back. I am really liking this website. Today has been a HORRIBLE day. Like it has been worse today then it has ever been. I came home from school crying because it hurt so bad & my mom has had enough with my neurologist because they NEVER return my calls. It is ridiculous. I am searching for another neurologist. I am going to a regular doctor tomorrow and I am hoping they give me something for the pain and refer me to another neuro. If they do not give me something I will be making a trip to the ER. They expect us just to "deal with" this pain? It's not called the suicide disease for nothing. I can't hardly eat or talk or drink anything. Something has to give. I went for about 4 months with no pain and it was amazing. And now it is back with a vengeance. I cannot believe that about all the druggies! That's ridiculous. That just makes me mad. That is probably what they think I am since I keep asking for them but I am just doing that because the pain is unreal. I will definitely print out some info to take in the morning. Great suggestion! It won't let me take the facial pain assessment and I don't know why! It always says webpage cannot be displayed?
Hang on - hsisk2013.
The weather change has probably made your TN worse, I know it did to me!!
I always forget about it until it comes! Yikes!
Terrible waiting time in the ER unless you go by Ambulance maybe.
Just keep insisting for the proper meds like Tegretol or Gabapentin, the anticonvulsant type drugs.
In my experience they won't go over and above T3's but these do help a bit.
I wish you all the best, just remember, you don't look like a druggie (they really should know the difference). :)
Cheryl,
Hydrocodone was the best the GP gave me.At the end when he realized it wasn't getting better,he was going to give something stronger.I didn't think the narcotics really helped much other than taking the edge off.The pain and attacks still came.And they wrecked my day as far as being functional between episodes.If it helps you,you should have it.All the way to Morphine IMO.Nobody else know how much this hurts.
Don, is that on top of an antiseizure med?
Cheryl,
Don said:
Hydrocodone was the best the GP gave me.At the end when he realized it wasn't getting better,he was going to give something stronger.I didn't think the narcotics really helped much other than taking the edge off.The pain and attacks still came.And they wrecked my day as far as being functional between episodes.If it helps you,you should have it.All the way to Morphine IMO.Nobody else know how much this hurts.
Cheryl,Yes,I took Carbamazepine 800 mg ,lots of x strength tylenol,and the Hydrocodone 10/325 mg as needed.He gave me samples of Cymbalta to try to add to the mix,but i had a bad trip kind of feeling when i took one the first time and never tried it again.
I wasn't a candidate for the AVD surgery due to a AVM(bulged vein type thing)that is close to the area and what they think is the cause of my TN.I had a Cyber Knife procedure on the AVM,but the pain returned with vengence.MRI showed no change to the AVM so far,but they say it takes time.Up to 3 years.I had a Gamma Knife procedure in mid July(happy Birthday!) and it seems to be successful!I am pain free for now.Don
Thanks! :)
Not Again said:
Yes! Definitely arm yourself with printed information from this site. All of the links and articles are from referenced medical literature...not just internet junk. There is also an interesting article about being told it's "all in your head". You should definitely read that one. It can be found on this site's main page under the FACE PAIN INFO link and then MAKING A DIFFERENCE link.
And definitely take the Facial Pain Test. It will give you your results and you can print it out and take it with you.You have waited a long time (God love you) for your appointment...go prepared & armed with info. Pain clinics are often ignorant about TN... I know from experience (sadly). Good luck & keep us posted.
Inquisitivegirl said:
Thanks for the info on what has happened to pain meds due to junkies. Did not know that.
I think I should print something off for my orientation on Monday with the Calgary Chronic Pain Centre, waited a year 1/2 to get into that. Then an appt. with my Dr. and I will see if he is receptive or not, if not, it's time to move on.
Cheryl,
Don, wow so much for me to learn...these surgeries scare me! But this site is a perfect place to learn about them.
That's awesome that your surgery worked! Aaah to be pain free!!
I take 600 mg of Gabapentin/Neurontin if there has been no serious attack and days like Tuesday and Wednesday I took 800 mg, I'm thinking of keeping it at 800 mg to get through the winter and hopefully stronger pain meds for when an attack happens.
Among others, I have taken Cymbalta and it did the same thing to me.
This Dr. I have now keeps pushing these types of meds for Fibro pain and depression, I keep telling him that I am not really depressed but just upset about my situation of pain and I have always had crazy reactions to these, I've tried about 5 of them over the past 6 years, but can't remember the names of them. So unless meds are for TN or pain killers I refuse to take them. He and I are at a stalemate!!
The highest he'll go with pain meds is T3. That's a bandaid for sure, but I'll take it. lol
I've written down Hydrocodone that you mentioned, I will ask him.
Take care,
Cheryl
Don said:
Cheryl,Yes,I took Carbamazepine 800 mg ,lots of x strength tylenol,and the Hydrocodone 10/325 mg as needed.He gave me samples of Cymbalta to try to add to the mix,but i had a bad trip kind of feeling when i took one the first time and never tried it again.
I wasn't a candidate for the AVD surgery due to a AVM(bulged vein type thing)that is close to the area and what they think is the cause of my TN.I had a Cyber Knife procedure on the AVM,but the pain returned with vengence.MRI showed no change to the AVM so far,but they say it takes time.Up to 3 years.I had a Gamma Knife procedure in mid July(happy Birthday!) and it seems to be successful!I am pain free for now.Don
I have had many struggles with this. I was even sent to a MAPS clinic, which specializes in pain medication for chronic pain. I was told by them that I needed to have the MVD surgery because they were not going to just "give" me pain meds. Each of the 5 neurologists I have seen tell me that I don't need pain meds because it won't do any good anyway. Luckily my Primary Doc is very understanding and has done nothing but be supportive and unconditionally helpful.
I still struggle and try not to be on the pain meds so I don't get "cut off". That is a scary thing to keep in mind too, everytime I take a pill I ask myself, "do I really need this or can I tough it out a little longer"....that is so awful and I wish I wasn't put in that postion.
You are not alone!!!!
((HUGS))
Knottytree
I am super happy to tell all of you that I went to my regular doctor this morning and she thought it was ridiculous how they refused to give me pain medication. She could tell I was in awful pain because I kept holding my face when I talked & I just broke down and started crying. I couldn't help it. She was very nice and she gave me a prescription for oxycodone & SHE IS SWITCHING ME TO TEGRETOL! I am stoked about this because I have been begging my neurologist to change it for quite some time now. Tegretol is supposed to be very effective for treating TN so I am hoping and praying it gives me some relief. Cheryl, the weather change definitely hurt me today. The wind would blow & bam there is the horrible shocks that last about 10-15 seconds but it seems forever. I was so excited they changed my meds & I wanted to tell all of you that because you all have been very helpful.