Hello Wanganui,

Welcome to the NeuroTalk Support Groups!

I'm sure that EnglishDave, or other members, will respond when they are able.

Happy New Year to you.

Welcome
 

Thank you Lara for welcoming me! Happy New Year!

Hi Wanganui,

Sorry for the delay in responding, I have been laid up, ill.

Few things are more miserable than chronic Facial Pain, even the sporadic attacks of TN only bear comparison - at least their intensity lasts minutes, it is not ongoing.

While the cause of my TN and Facial Pain/Paresthesia is known (arterial knot), no Neuro can understand WHY I suffer with the constant pain and numbness.

As for treatments, I have the misfortune of suffering chronic Cluster Headaches which take priority. For prevention I take Topiramate, an anti-convulsant, which has the beneficial side effect of reducing the Facial Pain, probably by 25%. Due to my multiple other conditions I also have monthly Lidocaine Infusions and take Oral Ketamine. After this procedure, or having taken the Ketamine, I notice a marked reduction in pain, but not the Paresthesia.

The Infusions are a little extreme for this condition, but the other two, or another anti-convulsant could be worth exploring.

Hope you get some relief.

Edit: Just read your other Posts. You should definitely have your GP refer you to an idiot Neuro (just my low opinion of them, but they serve a function sometimes). I am surprised you have not seen one before, that is the first option usually.


Dave.

Atn
 

Thank you English Dave! I will ring my doctor today to refer me to a neurologist.I need help quickly as there seems to be no let up with this pain especially over the last three months!Best Wishes!

Hi, I was diagnosed with the same thing but it's RSD. I used 4% lidocain nasal spray, 10% ketamine nasal spray and oral ketamine troches. The lido and k spray over time reduced and eventually ended pain. I has speneopatine blocks, stellates did nothing. The continuous use of the nasal sprays settled nerve activity down. Dental work troches helped. I also used ketamine topical cream on my face, refrigerator cold packs too. It's possible your cervical spine could be mediating your face pain or it could be vascular. Try clonodine patch and if it helps it might be vascular. My eyelashes and eyebrows used to feel like steel wool. Head pain no fun. You can use topical k on your neck too numbs pain signals when but on spine. Any questions send me a message.

Hi Jeri. I am very interested in talking to you regarding the Ketamine treatments as I am pretty much out of options and have a lot of rarities surrounding my particular case. My problems intensified/worsened after my wisdom teeth were extracted 12 years ago. After intense pain occurred in my upper left socket 2 weeks after extraction a mass formed in my upper left socket. The muscles surrounding that socket became inflamed/rigied to the point I could feel them popping out with a tongue sweep and I had an extreme headache. The mass was removed with no obvious causes or infections, and after a 3 week healing period which resulted me feeling the best I had in YEARS, the mass returned after being in a steam room/sauna.

I have had a headache all day, every day since. I have had teeth removed, nerve blocks, botox, all of the ATN/TN meds, tried accupuncture/chiro/massage/other alt medicines, had splints made, had balloon compressions with glycerol...nothing has helped. I have been to Mayo, Cleveland Clinic, Cedars Sinai...and others in a total of 12 states. In the last few years doctors seem to be gravitating toward the atypical facial pain profile, though I'm not so sure.

The problem with me is that I have a lot of unusual circumstances surrounding my case. Prior to the tooth removal I suffered from impaired nasal breathing, malaise, neck stiffness and a bunch of other seemingly unrelated issues like my smile feeling off and poor posture. Two days after removal I experienced a brief but 100 remission of symptoms. Imagine being born sick. You feel as if you don't feel like everyone else but you don't have a reference point so you are unsure. At this point I realized I had been dealing with something since at LEAST the 7th grade, when I experienced a period of extreme facial fatigue, a severe migraine, then a 3 month long bout of insomnia. I knew I didn't feel "right" but couldn't quantify it; this bothered me as I was a very intuitive kid who always knew when I had strep, sinus infections, etc. I started sleeping again but was never the same and it bothered me for years. I had no idea how bad it was until that epiphany after the removal.

So there is the age of onset (12), the mass (that formed TWICE in the same spot), the impaired nasal breathing (not sinus related), the muscular rigidity and dysfunction in that region and the headaches. Right now about the only things that I have left on the table are the DREZ procedure (don't feel good about that after the last one made it worse), MCS (no insurance covers it) and maybe ketamine treatments (no one close to Kansas City). The hard part is I have yet to find ANYONE that has a story similar to mine to the point where I'm like "yep that's me". To me be quite honest I'm not sure if I have CRPS (I don't quite fit there) or atypical facial pain (don't exactly fit their either).

All I know is I'm at the end of my rope. If you could give me some background it may help with some decisions I'll have to make.