Hemicrania Continua

[Mary 117]

Hi Cap'n Deb et al. I finally got an appt to see a neurologist next week. Using Deb's description of an elephant standing on the side of my head, feeling like my eyeball was going to pop out and death was knocking at the door, seemed to convince someone. Actually I think they just got tired of seeing me at the walk-in clinic. Say the words "I've had a a brain tumor" at the walk-in clinc and they throw some painkillers at you and scurry away like ants. No one wants to touch you.

Deb-you need to write a book about the post surgery life. I think it should be called "So now what?" Post surgery is like they hand you a baby hippo and say go home, raise this in your tiny house and don't let it die. We aren't going to give you any information on what's going to happen unless you show up on our doorstep with tears in your eyes(and money in your pocket) then we will only answer one question at a time. You must suffer greatly before we help with the next problem.>:(  Ok' I'm done venting. Maybe it's the elephant still sitting on my head that warps my perspective. Must make it 1 more week.

Thanks again.
Mary
1.9cm House Ear Clinic
May 24, 2006

[Captain Deb]

There has just got to be a common thread with these headaches--wish someone would gather us all up, put us in the spa-rehab center somewhere and study us for a while.  Even though the frequency of the really bad ones has decreased, the intensity hasn't--if anything it's increased. The pain is absolutely unbelievable--I shake and cry and groan for about 2 hours!  I haven't had to go through one alone yet, but my husband is planning to rehab a house this summer in Charlotte--2 hrs away, and I'm terrified to get one of these by myself--guess I'll have to get my brother or a friend to come over in the middle of the night to make sure I'm not tempted to off myself! Not having much luck with the Indo trial, which means I could be having cluster headaches--see http://clusterheadaches.com
Capt Deb

[Mary 117]

Cap'n Deb. I'm for the spa study but can you imagine all the lounge chairs filled with writhing, headache suffering people but I bet we could still laugh and I would certainly have a margarita in my hand and a mini-umbrella behind my ear. Seriously, I wonder if anyone has ever dealt with the scar tissue that now makes a home in our heads. I saw my 1 year MRI last week and the Dr. was pointing out the scar tissue (which is normal-he said) but what if all the nerves start working again and they run into this scar tissue and go crazy. Could this be part of the headache issue? I'm going to ask next week.

I sure hope you find someone to stay with you. It is so scary to be alone. I'm doing the single Mom thing and trying to keep the stiff upper-lip thing going for the kids but sometimes when you come running home from work early, run into the bedroom and dive under the covers because one more minute standing up-right will do you in, they figure it out. I do have my parents in town so they help a lot.

You can't off yourself  anyway unless you've figured out where your'a gonna go when the volcano blows and even then you have to wait til the headache goes away so you arrive with a smile.

Mary
1.9cm House Ear Clinic
May 24, 2005

[staypoz]

The nerve entrapment thing is something I spoke to my pain doctor about.  There is a plastic surgeon at Georgetown U. who has helped headache patients by releasing the nerves from the scar tissue, but we are not sure if he has ever treated anyone with post-AN headaches.  I'm sure there would be a battery of tests to undergo to find out if the nerves are, in fact, entrapped. 

I think the bottom line is that no one really knows what causes these headaches, nor is there one method of treating them, or one method that is going to work for everyone.  I think it's important for us to push to get doctors to (1) be more  explicit about this potential, particular side affect.  ("Headache" was the last in a long list I was given and it was dismissed as being controllable with OTC medications.)  We also need to be push for more research on the causes and treatments for this. 

I'm lucky to have found a practice of pain doctors who are willing to try everything that is at their disposal, are open to suggestions from me and other doctors, and admit they don't know everything.       

[Janet]

I gotta agree about seeing a headache specialist. There are alot of brilliant neurologists out there that do great things with stroke, MS and seizure patients but most of them don't seem to be focused on headache treatment. The first general neurologist I went to was hailed in "Seattle Magazine" as the top neurologist in Seattle. He is a great doc but even he recommended that I see a headache specialist when his initial treatment didn't work!

Capt Deb, I hope your stomach issues are resolved. It's like dominos, one thing leads to another.

Stapoz, I think studying AN headaches could provide info to the general headache population. We are such a small group within a small group that unless it would help a significant # of people it probably won't be done.  Maybe it would provide insight for the general   headache population. I tried e-mailing Dr Goadsby whose name pops up on a lot of TAC research but it was undeliverable. There are a significant # of us on this site that might spark some interest. You are so right about pushing the issue.

I know what you mean about the neck tension and referred forehead pain. I have had Botox injected in the muscles that react to headaches and it has helped me.  It lasts for 3 months. It doesn't eliminate the stabbing electrical pains in the back of the head. Daily use of Indomethacin minimizes the stabbing pains for me.  I can't drink any alcohol and constantly watch my posture and that my head is straight.  What I wouldn't give for a margarita or two..... and get some R&R from this constant battle. I am way better off than I was a year ago.

There is a person on this site who was scheduled to have surgery to see if the nerve could be released. I wonder if she had the surgery and if it resolved the headaches.

Janet

[Mary 117]

No kidding about surgeons the letting people know about the post-op headaches. This has blindsided me, literally. I have humming along in my merry post-op world, and wham. I'm so thankful that Deb and everyone else has started this thread. It gives so many good insights. I would think this would be a great research topic for some Doctor somewhere. This site alone would provide many starting places.

At least my work place has been supportive, though my fellow workers were asking about medical marjunia (it's legal in Montana and I'm pretty sure they were just joking as they are all structural engineers). I said they would have to get their own. Now my musician friends...hmmmm...

Janet, please don't tell me I have to give up the margarita. Summer wouldn't be the same. But I do have to admit I would give just about anything (except my kids) to get some relief from the elephant pain in my head.

Mary
1.9cm House Ear Clinic
May 24, 2005

[Captain Deb]

A physical therapist who worked on my neck for several months thought nerve entrapment might be an issue and he worked on the back of my head/neck area with a vengeance and I thought he helped me alot--but a year later, I'm back in the same boat. I had Middle fossa surgical approach, which, from my understanding, isn't near the occipital nerve. However, the trigeminal nerve is in that general area and from the anatomical images I've studied, the pain is located right THERE. The thing branches out to your temple and above the ear, which is where it hurts the worst during the brainwrecks. I'll try to find an image and post it.  I don't know if the neck pain influences the headache, or the headache influences the neck pain as they seem to occurr simultaneously.
The descriptions of the TAC headaches are so spot on--with the eye tearing and runny nose and extreme agitation.
We just need to take charge of our own healthcare and keep researching. I'm getting good at reading medical papers, but what really pisses me off is that most really good sites want to charge a monthly fee to access them.  One more way the American Medical System tries to screw us! Not the British, though. Anyone has acess to the bmjournals, like it should be! AAAAAAAAAARRRRRRRRRRGGGGGGGGH!

Capt Deb

[Larry]

I go along with all that. Deb, we need ya to Captain the good ship PBW, there is no way out for you kiddo. We'll have to get young Batty's toys to work on ya.

On a more serious note, I see pain specialist number 5 next Friday - hopefully he'll have something in his arsenal (had to be careful writing that one!)

Laz

[Kathleen_Mc]

Mary:  medical Marijuana....good idea. I hate the smell of it though so I'd have to get it ordered in the pill form. (I didn't know it came in the pill form until I had to administer it to a patient of mine a couple of months ago). Only one problem though for, for those of us fighting the weight problem, the MUNCHIES!
Kathleen

[Captain Deb]

When I lived in the Islands, I smoked enough "medical marijuana" to last me for two lifetimes! De ganja be everywhere, mon! Quit about 18 years ago!! Not an option for dis wench! :oHEY I woke up headache free for the first time in a week!  Days not over yet--only 3 Lortabs all week! Also drinking a nightly de-tox tea to try to flush some of these noxious toxins outta me. But then again, one of my triggers, low barometric pressure- is on the rise.
Capt Deb

[Gennysmom]

Yea Deb!!  No headache!!!  Did you get the timed release stuff?  Is that working???  Missed you on the call last night!!!!!

[Captain Deb]

Apparantly the TR is working--I know, I missed you ,too. I was exhausted--this Indomethacine makes me very fatigued during the day. I've been taking 4 hour daily naps and going to be early.  I hate this drug--my stomach is killing me and I've gained 8 lbs cuz I have to keep eating so my tummy quits hurting. Yucky-yucky-poo-poo-poo!!!!
Capt Deb

[Captain Deb]

Here is a link to a midical illustration of the trigeminal nerve:

http://images.google.com/imgres?imgurl=http://medinfo.ufl.edu/year1/trigem/homeimg.jpg&imgrefurl=http://medinfo.ufl.edu/year1/trigem/&h=200&w=177&sz=14&tbnid=Bvp3dZlcgRRqxM:&tbnh=99&tbnw=87&hl=en&start=10&prev=/images%3Fq%3Dtrigeminal%2Bnerve%26svnum%3D10%26hl%3Den%26lr%3D%26sa%3DG

[Crazycat]

Hi Deb,


     Sorry to hear about your continuing headaches!
Have you tried the drug "Fioricet" or "Butalbital/ APAP / Caffeine TB" ? This drug is designed specifically to stop headaches. It was given to me because I had bad reactions wirh narcotics, especiially, Morphine. In fact, to this day if I take even an Acetaminophen with Codiene (tylenol #3) I get a ripping headache - and I am not prone to headaches. Interestingly enough, when I went in the hospital for an upper endoscopy, I was given Demeral and a tranquilizer, which also rendered me with the same type of headache that I would get from the other narcotics. Have you considered the possibility that you may be experiencing an adverse reaction to the meds they have you on?

   Also, I think you should contact the doctors that performed the surgery on you at House. They will take an active and concerned role in getting to the bottom of this. Tell them about my experience if you have to. Just get this taken care of ASAP so you won't be plagued
with those headaches any longer and you can move on to living a quality and fun life again.


  Do a Google search on the drug I told you about for more info.

 Take care,  Paul

[Captain Deb]

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