Hemicrania Continua

[Static]

Deb,
She's really getting big!  She loves people and gives everyone kisses and sometimes even bites! she's still teeting.  She gets up and cries every morning around 4:00, I let her out to pee, then when we come in, instead of going back to her crate she runs right for my room, jumps into bed and proceeds to go back to sleep!  I love her!!!  I missed you to Deb!

[Captain Deb]

OK ya wanna hear something weird? I think talking is giving me headaches, or triggering them to intensify. Since surgery, I have had an aversion to talking on the phone, going to social events and have basically become a little anti-social. More than 15 minutes on the phone gives me a screaming headache. Could the movement of my jaw be triggering some of the pain I get on the side of my head?  I had middle fossa and they did cut through a lot of the muscles that work your mouth. I also have two not-so-little bumps where the little titanium "platlets" are, that get very tender. Could there be some irritation there when I use my jaw muscles? I'm already convinced that there is some kind of nerve wiring problem in the side of my head cuz when I scratch my temple, I feel it near the back of my head.  My incision area hurts all the time--hence the diagnosis of hemicrania continua from my neurologist, but I think it's mechanical rather than systemic.

Any thoughts? I seem to get better medical info here than I do from my own doctors. Experience is a great teacher.  Botox here I come!

[HeadCase2]

Deb,
  The soreness around the titanium platlets does sound like things are being irratated.  Hopefully, this will improve with time.  As far as the "wiring", just about any surgery on the head can give wierd little ticklers to areas away from the incision site.  I once had a small skin problem removed in the temple area, by moh's surgery,  and I still get ticklers on the back of my head on that side occasionally.
Regards,
 Rob

[ppearl214]

OK ya wanna hear something weird? I think talking is giving me headaches, or triggering them to intensify. Since surgery, I have had an aversion to talking on the phone, going to social events and have basically become a little anti-social. More than 15 minutes on the phone gives me a screaming headache. Could the movement of my jaw be triggering some of the pain I get on the side of my head?  I had middle fossa and they did cut through a lot of the muscles that work your mouth. I also have two not-so-little bumps where the little titanium "platlets" are, that get very tender. Could there be some irritation there when I use my jaw muscles? I'm already convinced that there is some kind of nerve wiring problem in the side of my head cuz when I scratch my temple, I feel it near the back of my head.  My incision area hurts all the time--hence the diagnosis of hemicrania continua from my neurologist, but I think it's mechanical rather than systemic.

Any thoughts? I seem to get better medical info here than I do from my own doctors. Experience is a great teacher.  Botox here I come!

I ain't calling you no more!  Pffffft!   

*walks off in a huff!*


xoxo

[Larry]

Okey dokey Deb,

I went to see neurologist number 347 last week and he told me that the lower the incision behind the ear, the more responsive it is to anti inflams. My incision is high above the ear - great!. He also told me that there is a 40% fail rate for meds to treat the kinda headaches we get - great!

He prescribed me a drug which goes by the name of topomax here. It's actually - topiramate. This is another anti seisure / migrane drug but apparantly a "big momma". Anyway, I was told that one of the side effects can be glaucoma - 1 in 100,000 can be affected coz it interacts with a gene and whammo. Well, aftrer the second day, I noticed my eyes watering and getting sore so stopped it.

Back to the drawing board! He reckons he has a plan B so I'll call him and find out what that is?


Laz

[Captain Deb]

My Mom, both Uncles and my first cousin all have glaucoma controlled by meds, duuuh, ya thinks maybe I got THAT gene? Doc didn't even question my family history on that one. I'm sure you read my post on how wacky topiramate made me.
Phyll, I'm willing to put up with the headache just to get to talk to you.  I hadda dream last night that I came to visit you and you had this little baby and you wanted me to take care of it for you while you went off and did something--very weird!
Capt Deb

[Raydean]

To clarify this is a non AN response. 

Ok guys, I don't share this to often so I guess this is a big outing for me.  But prior to facial reconstruction I had terrible headaches that would not repond well to medication.  To over simpify I was born with to much upper jaw, not enough lower jaw ( completely different condition from normal braces issues) and by the time I hit  the big  30 I was in a great deal of pain from TMJ. It was as simple as trying to walk with one leg longer then the other.  Over time the joints break down due to the imbalance.  One of the things that triggered the headaches were

Talking to much
Eating crunchy/chewy food or
chewing gum
Stress also played a factor

While I was waiting Insurance approval (a three year wait and study of patience) I was told to talk as little as possible, and was placed on a soft food diet. I was offered pain medication, but refused due to the long term effects and the fact that my children were ages 4, 6 & 9 at the time. Thankfully I did receive coverage and had the surgery, pretty complicated for back then (early 1980's)  Once I healed i never had headaches to that level again.  The headache were enough to keep me down

So Deb, yes you may be onto something regarding talking and headaches.  Have you talked to your dentist about TMJ

Almost got me in trouble once.  Chet was head of the safety committee where he worked and we had to attend all of the safety award dinners usually sitting at the head table.  Well I couldn'nt eat the salad,, couldn't chew the meat, but the wine sure tasted good!!!!  oops.  The boss thought I was sweet and would pour me more and Chet ever so kindly kepted on passing the wine to the other end of the table. 

On a personal note long time list serve members know my 'passion" regarding doctor's experience and helping those with serious outcome.  It isn't only because of Chet's AN journey, it's also because i know what it's like to be different and all of the feelings and emotions that go with it.  I also know because of this that it's important to never give up hope.  At 18 I was told nothing could be done.  At 25 years of age I heard rumors that there was this new surgery that maybe could help, and by the time I was in my early 30's it was a reality.

That's enough about me.

Hugs to all
Raydean








 

[Janet]

Raydean,  Thanks for your inspirational story of your solution to your jaw problems. I especially loved the loved the part of "never having headaches to that level again"!   Seems like there is some similarity between the triggers of your TMJ headaches and Captain Deb's headaches.

Laz, That makes sense what your doctor said about the anti-inflammatories working better on the lower occipital area. Indomethacin works well for me and my incision and pain are not above my ear.  Captain Deb's incision is higher and doesn't seem to work for her. Your doctor scores a point!

I am wondering if Captain Deb's pain is coming from the trigeminal nerve because of the triggers and area of pain. I think mine is coming from the occipital nerve.  It seems like the wiring is screwed up like you mentioned Deb.  My incision is always tender but my headaches are on the opposite side. Maybe my problem is low enough in the brain stem to affect the opposite side? You guys got me going again. I'd love to figure this out!

Janet

[ppearl214]

Raydean, thank you SOOOOOOOOO much for sharing this with us! Like you, I'm a TMJ sufferer (diagnoses back in the early 80's), use to drive my ex-spouse (ew!) crazy with my teeth grinding in my sleep.  Have night guard that I wear on occassion. My headaches from TMJ aren't nearly like you had and have been fortunate that I haven't needed further treatment for it... but I can't thank you enough for sharing this part of your life with us. 

You know how much I value and respect your friendship. I am honored to call you a friend and thrilled that you shared this with us!

xoxo to you all!
Phyl

[Larry]

The jaw can play many tricks with headaches. My daughter had braces and jaw widening - yukko it was. She also grinds her teeth at night causing headaxches. She wears a plate to bed that is lijke a mouthguard and the heradaches have gone.


Laz

[Captain Deb]

Well, the hemicrania continues.............................
Hadta do a bunch of errands today. Traffic, driving, sometimes, like today I drive around in circles due to not being able to change lanes when I need to and NO left turns.  I find I walk around with a headache that would send most folks runnin' for the ibuprophen and a bed.  I just walk (or drive) around with it!  I just tolerate it til I can't tolerate it one more second, then I get out the meds. Sent my neuro a big old email about the Indomethacine trial and how it tore my stomache up and gave me a raging morning headache, but no response so far.That was a week ago. Haven't had a brainwreck in 3-4 weeks, which, I have to keep telling myself, is progress.
GAD--is Captain Deb fishing for a little sympathy or WHAT!
My drivers licence expired May 12 and I don't know if I hafta take a driving test to renew it. Hope they don't make me do a left turns!

 
PS REMEMBER--Three lefts DO make a right!

[nannettesea]

Hiya,
I thought I would try this wonder drug, too, but my doctor's nurse just said my pharmacy doesn't have it, that there's a nationwide shortage!  How do you like that!?

I really wanted to try it....oh well.
Hope you're feeling better, Capn.
Nan

[Larry]

Oh Captain Deb,

Where is the magic wand?

I really do understand what you are going through. I had a relatively good weekend as far as the head is concerned. My eyes are still sore from the topomax (I'm sureit was that). I might go for another eye pressure test. Don't want to ghet glaucoma on top of everything else.

You have just about tried every drug avaliable so I guess you havta grab the good moments and fully utilise them. With the bad ones - maybe get a puching bag so you can vent your frustrations on it.


laz

[Janet]

I was rereading some of the post and it seems like "Staypoz" was getting some headache relief from injections at a pain clinic. Deb, Maybe this treatment is worth trying since your stomach won't tolerate some of the medications. Have you tried any kind of injections? From what I can tell, headache neurologists tend to prescribe medications (including Botox) while pain clinic doctors (mostly anesthesiologists) favor nerve blocks and steroid injections. Is this what most of you have found as well?

I can't get my prescription filled for Indomethacin. My pharmacist said that 3 companies used to make it and now only 1 is making it. Luckily, I still have some, but am wondering if I will run out before it is available. I have some extended release left over but would hate to increase my daily dose just because I couldn't get the smaller dose.

A while ago I heard from someone who after trying many types of medication finally found relief from Depakote. I remember her saying that Neurontin didn't help her but this did. I never tried it because of the weight gain side effect and I still had other options to try. She helped me realize that you just need to keep trying and don't give up.

[Captain Deb]

WELL POO!!
Looks like I gotta go under the knife again!  Thanks to social security disability who told me I needed to find another way to make a living while in bed with a headache. Yeah RIGHT! About all I could do was knit cuz standin' up and moving around gave me a whopping headache.  Dr. Love bought me a buncha yarn and I started knitting up these fabulous scarves to sell and NOW I gotta have flippin'surgery on my flippin' ARM cuz I shredded my flippin' lateral epycondile tendon while knitting on pain meds.  Been having cortisone shots for a year and a half and now my elbow doc says time to slice and dice and hope for the best. Yet another roundabout side effect, like my ulcer, of this AN. 

I wont be able to paint for 2 months.  Yikes! Whattam I gonna do for fun! I guess I better learn to type left-handed!  My AN was left-sided too, which makes me even gimpier on the left. I am a little worried about being in that 5% who lose some function in the hand. I really like my doc, though, who is a sailor and PBW material as well
My surgery is next Tues and I think it's outpatient.  Just hope I don't have a brainwreck afterwards! Or before! Or during!

So thanks ALOT you Social Security Disability drones!  Now my entire career is in jeopardy from your wonderful advice!!
YOU SUCK!

Well, you guys here, You are the BEST!  I really don't know how I'd live my day to day life without a place to vent, share, and be silly!

Love and Kissies to You All!

Capt Deb