anyone finally get burnout?

[terracotta]

My pain doctor claims the nerve that is constantly firing and causing pain (from being entrapped in a scar neuroma) will likely eventually "burnout." This is hopeful news! Has this happened to anyone here? He also says in about five years pain management for cases like ours will be much improved.   
Let me know....
T

[Denise]

terracota, i have not heard of this, but i hope you have "burn out" real soon!
Denise

[Captain Deb]

Between years 3 and 4, I noticed much improvement, like going from being in bed howling  most of the time, to actually functioning fairly well. At year 3 1/2, I also finally found a doc who specializes in non-narcotic pain management. When i do get a headache, the pain is different--not that searing intense kind, but more like a dull ache--hence supporting the "burnout " theory. Also, my headaches always started in my incision area.  Hmmmm...........

Capt Deb

[terracotta]

Hi Denise and Deb,
Yes, the whole idea is hopeful. My pain management doc is Ian Carrol, MD at Stanford PC. He is great. Says there are alot of docs out there trying various surgical approaches but has worries about further injury to the nerve. Like he says, in about 5 years we'll have better options. I'd asked if I'd have to live like this the rest of my life. He says he hopes the nerve will burn itself out.

For me, my trigger points etc fire at me one way or another all the time w/ and without meds (anit-depres. or seizure meds) to some degree. Then there are times (used to be several times per week before I started anti drugs) the pain would excellerate to a migraine type pain, which Dr C says is the firing nerve (ie superior auricular) gets the trigeminal nerve going, which is of course  excruciating. To date, he's found a combination of meds is best because there are differing proteins that get this firing goingl   He tells me to let others know here that are in this boat to make sure you are seen at a Univ based PC.

Hope this helps.
T

[Janet]

Tell your doctor that his message brought me a lot of hope. It really made my day. I have heard of people getting better around the 3-5 year mark. It is hard to know if the headaches are lessening or the medication is working. I think to really evaluate burnout you would either have to be off medication or notice a difference while on a same dosage and same meds. I have an appointment at the headache clinic on the 13th. I'll ask my doctor some questions on the subject and report back you you all. I wonder what new treatments your doctor is refering to that might be available in 5 years. Hopeful!

Janet

[terracotta]

Hi Janet! Good to hear from you! I didn't get a chance to ask my doc about the "other tx" because this comment came out as he was leaving the room. At that point I'd asked if I was going to live w/this pain issue the rest of my life. I'll see him again in a couple months and can ask away. Be helpful if you also checked in w/your doc.
Tricia

[Janet]

Reporting back. I went to the headache neurologist today and asked about if the nerve ever burns out. She said it can suddenly stop. She has had patients with this type of specific headache stop. (About 10). She says it is difficult to say how many because some of the patients stop coming and she is isn't always aware if it is because their headache stopped or something else.

Janet

[Patti UT]

I'm at just about 29 months post op, I can honestly say that the bulk of my improvement has been in the last 6 months. Although I do still get the brainwreck headaches. I do notice though that the really bad one during the day can be brouight on by doing too much. The fatigue I think brings them on worse.  I certainly hope the nerve
burn out" thing is correct.  What hopeful news

patti ut

[Kathleen_Mc]

I am coming up on 17 years post-op and they haven't yet "burned out".......but I am for when it comes to coping with them.
Kathleen

[terracotta]

Kathleen, 17 years! 
Patti, hope your headaches continue to ebb away! 
Janet, thanks for checking with your doc! She didn't use the term "burn out"?
T

[Janet]

Hi,

I used the word "burn out". She used the word "stop".  When I asked her how many patients she has seen with headaches like mine and how many of those stopped, her reply was around 50 seen and around 10 that stopped.  She said that the statistics wouldn't be accurate because some of the 50 didn't come back for follow up or were out of the region and continued care with local doctors.

My type of headaches are classified as hemicrania continua   and are diagnosed with an Indomethacin trial. These are not necessarily associated with ANs. They are not the same as cluster headaches or migraines although there is a migraine component associated with them. The good news about the diagnosis of hemicrania continua is that Indomethacin works amazingly well. It sounds like a catch all diagnosis but it actually is very specific.) The nerve seems to fire out of control. The cause or point of the problem is unknown. (She didn't have much to say about a scar neuroma.) Treating the symptoms is the only thing to offer at this point.

Janet