Just wanted to ask if any of you have ever been referred to a pain clinic for atypical TN or trigeminal neuropathic pain?
I am diagnosed as Type 2 TN but have recently started be be of the opinion that i have TNP. Recently my pain has been worse than usual, has spread and is leaving me so fed up.
I have no idea what to expect when i get my referral, when i look it up online it mentions people with chronic backpain or chrohns or MS but no experience from anyone with chronic facial pain. Anyone care to share? x mel
ok im gonna broaden this...have ANY OF YOU WITH ANY TYPE OF TN OR FACE PAIN been referred to a pain clinic and can let me know a little of what to expect? :(
Wish I could help Mel, but I have never been to Pain Management. Saturday is often a quiet day on site so don’t be surprised if it takes a while to gain an answer. This has been viewed by 12 people so don’t give up hope. I suspect the reason that MS Back Pain and Chrohns are mentioned is because they are more common. Chronic facial pain seems somewhat less mentioned everywhere!
I am in the same boat as you. I have an appt on Oct 26th to see pain mgt. My pcm dr is telling me that he is hoping that pain mgt will be able to do nerve block injections to help with my pain. Sorry I can't be more helpful.
I have TN type 2…the nerve blocks were a total waste of time and $… I had a series of 2 trigeminal nerve blocks and a series of 2 sphenopalatine nerve blocks…they didn’t help one bit!! I have a peripheral nerve stimulator now and also take meds!! My pain is very controlled!! Sometimes non existant!! Hope this helps. First thing the pain management offered was nerve blocks!! I being so desperate at the time jumped on the chance for relief!! Wish I could go back to that time and refuse them!!
My pain management doc treats me with hydrocodone, oxycodone and clonopin so far. In the past I've had ganglion blocks, injections, but with no success. Neurosurgeon told me I would not be helped with any surgeries or gamma knife procedures because I have Type 2 or atypical facial neuralgia. My standard neurologist does not prescribe narcotics for pain, so he referred me to the pain management specialist. At my first visit, we discussed what I was taking to treat my TN, which right now is mainly effexor, after giving up on neurontin and being allergic to the tegretol family. We discussed things like how I clench my jaw when in pain and during sleep, what triggers my pain, my stress level, and basically everything having to do with pain that the effexor isn't covering. I needed different strengths of pain relief...for example, I work full time and can't be sedated during the day so he chose a particular med for that. He prescribed a stronger narcotic for break-through pain and gave me clonopin to take as needed to relax my jaw muscles and prevent me from grinding during my sleep. I brought with me my entire TN history and a list of questions I had. That's about it. I have followup appts with this doctor, but still see my neurologist regularly and keep each of them informed. They are not with the same medical group but I was referred to the pain specialist by my neuro.
Hope everything goes well for you with your specialist.
Hi Mel, I am going to my first pain clinic appointment on Wednesday. My GP isn't very comfortable treating pain or prescribing medication to treat my TN - he has previously treat one patient with typical TN and had never heard of type 2 TN, and is also not keen to prescribe any sort of pain medication so has referred me to the pain clinic, which has a facial pain specialist on the team. I want them to review my medication and hopefully increase doses or change it so that I get a bit more relief.
The clinic I am going to also at alternative treatments for pain - TENS, acupuncture and physio as well as injections. They also look at individual/group support to help people manage the pain and reduce impact on their lives. They say they treat back pain but also post operative pain various different types of neuralgia and osteo arthritis. Some days knowing this appointment is coming up is what keeps me going and other days I wonder if they will be able to do anything, but really at the moment I'd be grateful for any sort of help. They sent a detailed questionnaire asking about the pain but a lot about how it affects my life, my job and my partner as well, and I had to complete it and send it back in advance, so I'm hoping they'll have looked at it and will have something constructive to say.
I hope it all goes well for you and I'll give you an update after Wednesday.
aww jackie was my desperation so obvious? hehe im sorry if i seemed aggravated at all..i was not mad at anyone here of course, just my stupid face...:(. Thanks for the encouragement
Jackie said:
Wish I could help Mel, but I have never been to Pain Management. Saturday is often a quiet day on site so don't be surprised if it takes a while to gain an answer. This has been viewed by 12 people so don't give up hope. I suspect the reason that MS Back Pain and Chrohns are mentioned is because they are more common. Chronic facial pain seems somewhat less mentioned everywhere!
It seems like the pain clinic just has more rights to hand out meds :O...i didnt know alot about it but i had told my doctor im feelings increasingly depressed and i know its the pain.She had told me the pain clinic will evaluate if a patient needs a therapist to help handle and discuss the pain. Elsewhere i saw talk of a crafting group? I thought it was too good to be true haha sounded fun :(
It was my neurologist that refferred me, i guess things are run different in various countries too.
Im so glad your appointment is coming up! I know what you mean about the wondering..is this going to help massively?is this going to be a fail? I feel anxious about it too..i guess thats why i wanted to know what others went through..i dont want to work myself up only to be disapointed..i dont mean to be pessimistic im just tired of the pain..so so so so so tired..ten years of this crap. I was actually getting used to it in a way until recently after a sinus op i have new pain, in new areas..i feel like i will explode!
I think its great if the clinic will offer alternative treatments and i can understand your doctors reluctancy to just hand out any meds if it might not help or may just make you feel ill. For me it isn't just about the pain, i am thinknig about the long term management of it. My partner has wanted a child for a while already but in this pain..and on these meds..i would never try for a child..i think its selfish and irresponsible, but that does not mean that i dont want one :(. I am hoping i will have my pain under control and make a long term plan .
ruth13 said:
Hi Mel, I am going to my first pain clinic appointment on Wednesday. My GP isn't very comfortable treating pain or prescribing medication to treat my TN - he has previously treat one patient with typical TN and had never heard of type 2 TN, and is also not keen to prescribe any sort of pain medication so has referred me to the pain clinic, which has a facial pain specialist on the team. I want them to review my medication and hopefully increase doses or change it so that I get a bit more relief.
The clinic I am going to also at alternative treatments for pain - TENS, acupuncture and physio as well as injections. They also look at individual/group support to help people manage the pain and reduce impact on their lives. They say they treat back pain but also post operative pain various different types of neuralgia and osteo arthritis. Some days knowing this appointment is coming up is what keeps me going and other days I wonder if they will be able to do anything, but really at the moment I'd be grateful for any sort of help. They sent a detailed questionnaire asking about the pain but a lot about how it affects my life, my job and my partner as well, and I had to complete it and send it back in advance, so I'm hoping they'll have looked at it and will have something constructive to say.
I hope it all goes well for you and I'll give you an update after Wednesday.
Hi, Mel! I have been going to a pain mgt clinic for a couple of years now. I have TN2 but also get the TN1 type shocks. I have had a good experience at the clinic. The doctors were very thorough in their exam and asking questions about the type of pain I have. First, they prescribed me a different meds because, at the time, the one I was on was not working. They also gave me a Lidocaine creme, which does help some with the throbbing. I also received nerve block injections, and trigger point injections. There are several other procedures they can do, but these two were the only ones I have had done so far. As far as the injections helping, sometimes they helped a lot and then other times they didn't. I usually wait until I am in really bad shape before I get one. It is worth it to me to try a block because I have had some good results. They also prescribed me Morphine, as my family doc was uncomfortable prescribing this to me on a long term basis. The one thing I really liked about the PM clinic was that they were willing try as many meds as needed until we found the right combo that worked. The neuro I saw before them just wanted me to get surgery and when I told him I wasn't ready to have brain surgery, he said he couldn't help me anymore. I really feel like they take my pain seriously. I think I have the most treatment options through the PM clinic than any where else. I hope this helps and I hope you have a good experience at your appt. (Oh, they also gave me a TENS unit to try. Sometimes it helped, sometimes it didn't. Wasn't consistent enough to keep it: my insurance wouldn't pay for it.)
Hi Mel, my appointment was this morning. What they mainly did today was go through my details/history and talk to me about what they would/would not be able to do. I think the best thing though was when I had explained why I was there the consultant said "You're in the right place and there are things we can do to help." That really helped, because it made me feel much more hopeful. He has also had experience of treating people with TN and listened properly to what I had to say.
We mainly talked about medication because it's the bit my GP told me I needed to see them for. He has told me the best way to increase the dose of my medication and how much I can take. He's going to write to my GP to explain the best approach to my medication and to give him alternatives to try if the side effects are too bad when I increase the dose of the tegretol. He also told me about other things they can offer and what he would recommend so it's now up to me to make some decisions, but I feel in charge of what's happening, and will be going back when there's been time for the increased dose to take effect.
Overall it was a really good experience. I am really relieved that I am getting more support and actually have someone treating me who has experience of TN. I hope it goes well for you.
Hope you have a good experience like Ruth did. Let us know how it goes!
Blessings to you!
ruth13 said:
Hi Mel, my appointment was this morning. What they mainly did today was go through my details/history and talk to me about what they would/would not be able to do. I think the best thing though was when I had explained why I was there the consultant said "You're in the right place and there are things we can do to help." That really helped, because it made me feel much more hopeful. He has also had experience of treating people with TN and listened properly to what I had to say.
We mainly talked about medication because it's the bit my GP told me I needed to see them for. He has told me the best way to increase the dose of my medication and how much I can take. He's going to write to my GP to explain the best approach to my medication and to give him alternatives to try if the side effects are too bad when I increase the dose of the tegretol. He also told me about other things they can offer and what he would recommend so it's now up to me to make some decisions, but I feel in charge of what's happening, and will be going back when there's been time for the increased dose to take effect.
Overall it was a really good experience. I am really relieved that I am getting more support and actually have someone treating me who has experience of TN. I hope it goes well for you.
Hello ladies, Thank you so much for your experiences
Now i feel like i know a little more what they may offer me, after reading your experiences, and knowing my hate for needles..i think a nerve block injection is something i would not go for unless there was no other choices left..so i can tell them that.
Its great that they evaluate you on the meds constantly too. As you know much of the meds we take for TN are so strong..the leaflets ALWAYS SAY, be checked regularly for changes in blood, or like, talk to your doctors about long term use and such. Tramadol worked for me in the past..i stopped it because my family hated how it made me look and act..i slep most of the time and i became seriously underweight..the doctor perscribed me it and just gave me repeatable perscriptions, i was no checked for addiction, they did not check if they helped or did not help..nothing.
Its dangerous. Not to mention taking strong pills that might not be right which can affect your body, an dtaking them loyally as you have been told not to stop them without a consultants permission and such. It seems they are alot more 'in the loop' with your pain and constant ongoing situation...im so glad...i dont want drugs chucked at me and then ignored for 6 months.
Hi Mangamel, I am very new to this site and saw your request now.I have Trigeminal Neuralgia on the left side of my face. I went to a Pain Clinic in Johannesburg for a year. The Prof there uses Electro impulse therapy and Cryo therapy combined. I don't know what kind of therapy the pain clinic will use that you are going to. When I started going to him I had regular lightning strikes - very very painful. So bad I asked my husband to help me kill myself. I went to the clinic three days a week for a year and I found that the strikes had receded significantly. But I was not cured. He wanted me to stay on to receive more treatment but I simply couldn't. The procedure entails putting acupunture needles attached to electrodes all over the head and face and neck and arms. Then he switches on the electricity. After that he used cryo therapy to freeze the parts he has treated. After a year I just could not do it any longer. I had an aversion to needles to begin with and I don't anymore but I couldn't face another year not knowing that I would be fully cured. Had he been able to guarantee me a complete cure I would have stayed on. But I developed a mental block about going there.
I hope this helps. Or maybe not. But check out what they treatment they use.
Mangamel said:
ok im gonna broaden this...have ANY OF YOU WITH ANY TYPE OF TN OR FACE PAIN been referred to a pain clinic and can let me know a little of what to expect? :(
I wrote you another reply but for some reason it did not send correctly *frustration*
I just wanted to thank you for the information and i understand that fear assciated with medical appointments can be so strong sometimes, i hate it. You are very brave..ive had acupuncture from a traditional chinese medical doctor, one i trust, and it gave me the worst pain of my life, one that made me say 'rather be dead' i never did it again!
Take care and hope your having a better time controlling the pain x