morning AN side head pain & eye problems

[Patti UT]

HI ALL,

  I am looking for some help.  Quite often I will wake up during the night and be laying on my AN side, it makes my head hurt so I turn over and go back to sleep. But if I wake up in the morning and I have been laying on the AN side , probably for  a long while, I wake to excruciating pain and MAJOR wonky headedness. It makes it very hard to get the day going and usually stays with me the majority of the day. I had asked my Docs about this many months ago, and of course, they had nothing to say about it, just, "well don't lay on that side". Anyway I just assume it's the pressure put on the surgery site that causes it and have tried to accept it as another post op  problem.

But today was quite different. I woke on my AN side to worse than ever pain, and my AN side eye would not open. The pain was horrible behind the eye and it felt puffy around it. It has been feeling extra itchy and dry the last few day so I have been using extra drops. I have felt so very fortunate in that my facial paralysis and eye issues only lasted about 3 -4 months post op, and although my vision was left blurry and much less than before, and I have a little pain to the touch below my eye, I no longer have to use drops every day and can blink just fine. It has been 2 hours since I got up this morning and it isn't getting much better. I had to use the drops immediately, can blink a little better but very blurry vision and the pain is something else.This is freaking me out. Thought I was long past any facial poblems.

Anyone else ever experienced anything like this long after surgery? I'm 23 months post op.
I would appreciate your thoughts

Patti UT

[Battyp]

Patti I'm sending big hugs your way...unf. I don't have an answer (  I know if I stay too long on my an side I get the wonky headed feeling and start with a headache...my neck starts to hurt so I think I'm stressing the muscles out. 

Have you called the doc this morning?  Something just doesn't sound right to me.  Sounds like a gland might be stopped up??  I so wish I had the answer!  Keep us posted on  how you are doing! 

[Captain Deb]

Patti
Every symptom you just described is that of a cluster headache. The one-sidedness, sand in the eye feeling etc esp eye swelling. The sleeping on one side or the other may not have anything to do with it. For me my clusters are ALWAYS on the AN side Here's a link to explore
www.clusterheadaches.com
You gota get some relief girl! Headache specialist time fer ya! You almost always need a refferal to see one of these docs--ask your neurologist or GP for one.

[Patti UT]

Thanks for the link Captain Deb, and the hugs BP

    So now a new journey begins. cluster #%&* headaches.  I have been avoiding any kind of Doc office lately. My kids just started back to school Wed. Guess I know what I'll be doing with my free time. (thought for a minute there I'd try to go back to work in some fashion, whatever was I thinking?)  I put in a call to my Primary car Doc, cuz ya know , gotta play the Insurance referral game. She left the practive, so now I hafta fins a new Primary, get a written referral to go back to my neuro (cuz the one from before is over 6 mo old), go to him and beg him to refer me to the headache wizzard here at the University of Utah. I tried to get in to see her last year and got so fed up with the red tape BS, gave it up. She is really hard to get an appointment with, this could take a very long time. In the meantime, I could go back to my bottle of do-do-do dopomax.  duhhhhhhhhhhhh

Actually, I think I'll call and scheduel a massage. fell to crapy to go, maybe set it up for monday. kids about out, 1/2 day of school on Fridays, time to try and play mommy.

Although I had really bad headaches before the An was diagnosed, which is one of the symptoms that got me to the Doc. They were nothing like this, and these are getting worse.  I wonder if the AN and/or surgery contributed to the onset of cluster headaches? ANy thoughts??  In glancing on that headache site I saw somewhere that the cluster headache is caused by some sort of cel production in the brain,  could it be a cell overproduction?? like what causes the AN.  This would be interesting to research.

Again Deb thanks for the info.  and for the support BP,  can I, can I, can I please get on your ship and wear pirate socks and sail off into the sunset of one of those beautiful pictures Deb posted???  Of course I want to travel headache free

[Captain Deb]

Can you get your GP to prescribe you some injectable Imitrex in the meantime? I heard they are making the auto-injector in 4 mg now. I use 1 1/2 mg and self inject and I use it 3-4 times a week. This is the only stuff that hasn't failed me yet.It is absolutely my wonder drug.
Capt Deb

[Patti UT]

Deb,
My GP would be my primary, I have to get a new one, since my old one left the practice since I last called her. I just found this out his morning when I called. Ididn't really like her anyway. I had to switch to her when I switched insurances a few years ago, then I got the AN diagnosis so I stayed put through it all, just used her for the referral paperwork. I know who I'll go to, but it will take a few days for the paperwork to process through the insurance.
I have never tried Imitrex. I'll look into it first thing when I get in to the new Primary care(GP) Doc. EEWWWW injectable???

I've read some of your other posts about it. Guess you gotta do whatcha gotta do. Anything for releif.
Gotta go close my eyes now and pretend I'm wearing pirate socks sipping on an umbrella drink on one of them islands

bye

[Captain Deb]

The auto-inject pen is really easy--you don't even see the needle--just hold your breath and push a button. The hard one for me was manually injecting. The first time was the hardest. It actually hurts less that the auto injector and leaves less of a mark. Now, I don't even think about it. The problem is, Glaxo doesn't make my dose in the pen. The pen comes in 6g or more recently 4 g. My Wizard has me on 1 1/2 to 2 g so I can use it more often. I haven't had to suffer like I used to (and you know what I mean) since I've been using it, and I've had some pretty bad ones. I had a "3 jabber" recently, but by dinnertime I was up and about. My really bad ones are the ones I wake up with.
Capt Deb

[Battyp]

Been there done that so glad I don't have to right now!  I still have my injector pen..not sure why I saved it as I haven't used it in years.  I used to eat Zomig candy  LOL  Now I'm on fiorcet.  Zomig made my facial numbness a lot worse!

Patti of course you can wear pirate socks and sip on anything you want!  On the Good Ship BW you have no worries, no headaches, no balance problems just lots and lots of fun with some great friends..oh and pink spandex!  (it's mircale stuff ya know makes us all look thin and keeps us from falling overboard 

Hope you feel better soon!  Oh how I hate the doctor insurance game!

[Captain Deb]

From ANA newsletter in 05: Posted by peanut.
Thanks Peanut!

Larry and Wind 6,
Have you seen the latest (September 2005) issue of ANA Notes?  The Q & A session at the National Symposium in Florida last June featured questions from the audience fielded by doctors William Friedman (Gainesville, FL), moderator,  and  Patrick Antonelli (Gainesville, FL), Derald Brackmann(House, Los Angeles, CA), and Stephen Lewis (Gainesville, FL), panelists.  To the questions why does retrosigmoid surgery cause headaches and what can be done to alleviate these debilitating headaches, Dr. Lewis acknowledged that "they're obviously a very difficult, troublesome and significantly life affecting problem. It depends on the characteristics of the headaches.  They can range from simple wound pain, a disruption of the nerve-the cutaneous nerves in the skin-all the way to disruption through fibrous scarring deeper in."  He goes on to say that with the retrosigmoid approach "there could have been involvement or division of a nerve called the great occipital nerve, which comes up through the muscles of the neck and  supplies the area of the scalp, starts occipitally and radiates forward and gives rise to a characteristic kind of headache and can be exacerbated by palpation of the region.  If you push on it, you can really get a bad, bad headache.  That can happen with this local scar tissue, if that nerve is working its way to the surface, or may have a neuroma formation itself. There are may ways to treat that, from local medication, anti-inflammatory medications to local injections to steroids and local anesthesia agents to more permanent methods, such as nerve sectioning, freezing, or surgical division of the nerve.  It really depends on the exact characteristic of your headache."
Dr. Friedman  offers another physiological explanation for the pain and suggests a surgical solution:
"Headaches may be more common after retrosigmoid approach [sic] than after translab.  I think the reason is that if you don't reconstruct the area by putting the bone flap back and putting some plastic over the hole, then the dura, the lining of the brain, is in immediate contact not with the skull but overlying muscle.  As that scars down, whenever those muscles contract, like whenever you move your head or neck, and the muscle contracts, it pulls on the dura, a pain sensitive structure and that can cause a severe headache.  When we do have medically intractable headaches after a retrosigmoid, I encourage patients to think about having a very minor procedure.  We open that wound, remove the scar tissue and put a small plastic plate in the bony defect, so that the dura is no longer in contact with the muscle."
Does anyone have any experience with any of the explanations and suggestions for treatment of  post-op headaches given by Friedman and Lewis at the AN Symposium?
thanks in advance,
Peanut

I had MF approach as did Laz, which is supposed to have a better no-headache record. Go figger!

Capt Deb

[Peanut]

My really bad ones are the ones I wake up with.
Capt Deb

You too, Deb?  Those are usually the worst for me....  Hate to bring them to mind, hard to get rid of too.

I need the continuation of the headache threads, never found follow up for the Friedman coments. Several patients were intending to see him and report...anyone??

Peanut

[Patti UT]

Well I survived yesterdays head in the vise attack ,   After the day from hell and up most the night, I woke up with only 1/3 as bad today as yesterday, seemed to get a bit better mid day then started peaking again mid afternoon.  The eye is really giving me trouble. I read on the cluster headache site that some people get a stuffy nostril and runny eye on the sisde that the pain is on. The eye is having trouble with the blink a bit, no running because theres hardly any tearing in that eye, and the weird thing is, I'm having a runny nostril on that side only.  If this was the month after surgery I would be worried about the fluid leak out of the nose, but this late in the game?? And I've had pain radiating kind of in my cheek bone as well as around my eye.  Really weird . This eye thing is making me nervous. I don't want anything messing with my facial nerve. BTDT  already got past that. Time to see the Docs this week.  Looking for that injectable Imitrex at a minimum
Patti ut