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Help! Doc won’t treat trigeminal neuralgia!!

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Chronic Pain
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luvdogs
Regular Member
Joined : Jan 2005
Posts : 190
Posted 11/7/2020 2:26 AM (GMT -7)
I have severe trigeminal neuralgia. Also my teeth are eroded from long term inhaler use for asthma as well as high dose Medrol.

I now have developed severe trigeminal neuralgia. I can’t afford medical care right now. But the pain is beyond excruciating. I cannot touch my face or even eat without screaming in pain.

I also have severe PTSD, which causes very intense flashbacks & dissociation. And pain makes me worse.

My doctor will not treat my pain because of the psychiatry meds. But if I go off them, flashbacks rule my world.

I’m aware the DEA advised against using pain meds with psych meds, but after talking to the DEA & Board of Pharmacy, they looked at my results & advised to treat me. Doses of both are low & wont cause respiratory depression or addiction.

Even now my doctor won’t listen. I’m at the end of my rope with pain & not eating or drinking. I can’t switch to another doc because he is the only one around.

Does anyone have any advise? My face is on fire!!!!
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 18251
Posted 11/7/2020 8:16 AM (GMT -7)
Hi luvdogs, so sorry to read about your dilemma trying to get treatment. TN can be difficult to treat for many. I don't know what your treatment has consisted of, but I will pass this information on to you from prior members here. Many members said they finally got relief by taking a combination of Gabapentin & Baclofen, both are used to treat nerve pain. If you have not used this combination discuss it with your gp, these are medications he should be comfortable prescribing.

Back in 2016 millions of folks on benzos & pain medications had to make a choice on which medication to keep of the two. The CDC guidelines are directed at gp's prescribing pain medication long term, regardless of how small of a dose. Some have success with seeing a psychiatrist for the benzo's & a pain mgt dr for pain medication. You can consult with a pain mgt dr & see if he/she will prescribe, it's not a guarantee, but it's something to consider. If you do not have prescription coverage, download the GoodRx on your phone. It's a free service & can save you quite a bit on medications, I use it all the time.

Regardless of what the DEA told you over the phone, if this is your gp, yes he would get flagged for prescribing both medications. Drs do not want the feds showing up seizing their computer for an audit, it's too disruptive for the drs.

Take care.
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GreenBeans
Regular Member
Joined : Dec 2016
Posts : 96
Posted 11/7/2020 9:06 AM (GMT -7)
So sorry you have trigeminal neuralgia - I had a bout of it that lasted a couple of weeks and understand how painful it can be. Mine began to calm down after I had a chiropractic appointment where an adjustment was made to my upper neck, the atlas. The atlas is the first cervical vertebra of the spine which supports the skull. That and ice seemed to end the episode - the pain medication I had on hand didn't seem to have any effect and I never figured out what kind of Dr to see, so I never tried anything else. Best wishes for a fast recovery.
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Mercy&Grace
Veteran Member
Joined : Jun 2013
Posts : 1870
Posted 11/7/2020 1:55 PM (GMT -7)
The Dea, Board Of Pharmacy or another doctor cannot tell your doctor what he can and cannot prescribe. Your doctor is the only one responsible for how he does and does not treat you.

Has your doctor that treats your pain talked to your psychiatrist? Has your psychiatrist written a, letter to your doctor explaining why he prescribes you certain medications? Have you tried other medications that might not be as dangerous when used with opiates? Have you tried other medications to manage your pain that might not be as dangerous when used with your psy medications?

Some doctors do prescribe opiates to patients that are also prescribed benzos and/or certain other medications. But they can be hard to find.
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luvdogs
Regular Member
Joined : Jan 2005
Posts : 190
Posted 11/8/2020 3:29 PM (GMT -7)
Thanks so much for your replies! My psychiatrist is writing a letter. Unfortunately I can’t go off the PTSD med as it is the only med that keeps me steady. When I had bad endometriosis, Lortab was prescribed with a benzo, but I carefully staggered them. For 30 years, I never had a problem. I also take gabapentin for trigeminal, but it doesn’t touch it. It isn’t right, safe, or fair that I’d have to discontinue the benzo to get on something to control pain. Without the benzo, I have scary flashbacks nonstop. It almost seems discriminatory. And the DEA agents said it was never their intention to put this fear in doctors. They are highly trained. I’m at the end of my rope with this pain.
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Mercy&Grace
Veteran Member
Joined : Jun 2013
Posts : 1870
Posted 11/8/2020 5:11 PM (GMT -7)
I took Valium 10mg QID and an opiate for as long as you did. Most of the time, I took Valium for muscle spasms. But there were times I took Valium for panic attacks caused by a minor heart defect. Through the years I took codeine 60 mg, lortab 10 or demerol 100 mg for chronic pain.

Doctors were being warned about the dangers of benzodiazepines and opiates as well as certain other drugs long before the CDC came out with their guidelines. The CDC Guidelines issued in 2016 were aimed at Primary Care Physicians. The CDC issued revised guidelines last year. Unfortunately, the language they used was not strong or specific enough to make a difference. Under the circumstances, you may or may not be able to find a new pain management doctor that does not have a problem with prescribing a opiate with the benzos you take.

Post Edited (Mercy&Grace) : 11/8/2020 5:22:20 PM (GMT-7)

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straydog
Forum Moderator
Joined : Feb 2003
Posts : 18251
Posted 11/10/2020 11:56 AM (GMT -7)
Once you get your letter from your psychiatrist take it to your dr. However, keep the original letter & provide a copy only to the dr. My question is, is this your GP turning you down for pain medication, or is it a pain mgt dr?

Keep us posted.
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Mercy&Grace
Veteran Member
Joined : Jun 2013
Posts : 1870
Posted 11/21/2020 9:08 PM (GMT -7)
I respectfully disagree with Susie on this. Under the circumstances, your doctor would probably be more comfortable with the original letter than a copy. Copies can be forged. on the other hand so can originals. If the letter does not help. I think it would be a good idea to ask your psychiatrist to call your pain management doctor. If you are seeing a gp. You need to be prepared to start looking for a Pain Management Doctor.


PS. I am not implying that you would forge or alter a letter. Unfortunately there are patients that do. That is why doctors prefer to obtain medical records directly from the other doctor or to talk with them directly.
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GreenBeans
Regular Member
Joined : Dec 2016
Posts : 96
Posted 11/22/2020 8:07 PM (GMT -7)
I'm curious; why are you focused only on pain medication -- instead of trying to address what is CAUSING the trigeminal neuralgia? It can be coming from dental or jaw issues, or from issues with the atlas. The atlas is C1, the most superior (first) cervical vertebra of the spine. Or any other structures in the head/neck that are affecting the nerve.

My trigeminal neuralgia was resolved by figuring out what was causing the neuralgia and treating that. I never found a pain medication that helped, and I tried Norco and Vicodin, as well as Neurontin (used specifically for nerve pain).

This website lists many other treatments, and pain medication is not generally considered an option.
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/diagnosis-treatment/drc-20353347

Good luck.
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BnotAfraid
Forum Moderator
Joined : Apr 2012
Posts : 8524
Posted 12/30/2020 7:37 PM (GMT -7)
Luvdog. 💛🐕

I empathize with you 110% .
Have you applied for disability yet?
Lots of great neurologists take Medicare

You are in a hard place right now and
As awful as you feel, you must be you own advocate. Why? No one really understands the pain unless they see a love one go through a bad episode.

Try heat packs.
Gentle yoga to strengthen the neck shoulders upper back.

Walk, wear a ski mask

I have:
TN
Cluster pain.
Hemi cranial continua
Face pain, TMJ ..all from trauma.

Neck is wrecked....Yada Yada Yada

My neuro treats me for migraines, dxs all fall under that umbrella.. since 2006 I was turned down for all surgical procedures.

Ask your doc to try Topamax and Amtriptyline. Together as pain maintenance meds I take 250ng T and 75mg A

I have 24/7 pain level average a 6
Spikes to 8 - 10 easily with weather and
Physical activity, like walking, stairs

Not knowing where you live, I go to RELIEVOUS IN Cherry Hill, NJ
my Neuro is there, and he works with my pain doc and Marijuana doc.
Took years to find them. They take medicare
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