I cannot live with these headaches!!!

[lawmama]

I have been having the most horrendous, miserable headaches since I had my retrosigmoid surgery on Dec 14th.  They started immediately after surgery, and at first I thought it was normal to have pain in my head.  After all, just had my skull drilled open.  However, the longer they go and the worse they get the more I'm a little worried and weary.

My headaches are more like extreme pain in the back of my head.  They go all across the back of my skull and don't seem particularly worse on either side.  Sleeping or laying on my head is miserable.  I dread sleeping.  If I skip my medication and  let it get out of hand, the headache radiates to my entire head and pulses with my heartbeat.  I can literally hear the blood rushing with my heartbeat.

My doctor seemed to think they are tension headaches triggered by tightness in my neck muscles, and prescribed a muscle relaxer.  It has worked 0.00%.  The only thing that gives me any relief is a type of migraine medication called Fioricet, but it makes me loopy.  I don't like taking pills.  I'm taking the max dose just to keep them tolerable, so this can't go on.

I feel like I am having an amazing recovery otherwise.  I'm dealing well with being SSD, I'm walking and getting around well, I'm even making incredible strides in my balance.  I just can't live with this pain.  I'm normally tough, but after two weeks of this I'm a little worn down from constantly hurting and being tethered to a pill that makes me feel out of it.

Any suggestions?  Has anybody experienced this before?  I truly am hoping they ARE tension headaches, because that means they might improve with time.  I can't imagine doing ANYTHING productive when the best I can do is bring the pain down to a tolerable level.  It's really distracting.  From what I have read on this board, normally headaches don't start immediately after surgery, or seem to be in a different location, so I'm wondering what is going on with mine.

By the way, I will be calling my doctor again on Monday, I was just looking for any ideas on this before I go in.

[epc1970]

Hi Lynn
Your headaches sound a little like the ones that I have been working around for the past year and a half.
I have been working with a spine specialist who intially did some very gentle OMT and crainal sacral therapy to ease my general head discomfort. We've tried alot of things but by far the most successful thing I have taken medicatication wise is Ultram ER 100's. I take one a day and feel wonderful and have not had a headache since I started taking it 2 weeks ago-I usually had daily head and neck discomfort. My Drs conclusion for me is that my headaches are really starting in my neck which sounds similar to you. I don't like having to take meds daily but I will if I feel so much better. One thing I had noticed prior to this is that my headaches/neck pain frequency and magnitude has abated on it's own some over time so you may just need more time as well since you are just a few weeks out. Good luck-as you know, everyone is different and what works for me may not work for you.
Erin

[lawmama]

Thanks for the reply, Erin!

I think you are right that my headaches are starting in my neck (which is tight- I don't have full range of motion back in my neck yet).  I'll ask my doctor if there is another type of medication we can try.  Like I said, this makes me loopy and really doesn't take the pain away, it just brings it down to a tolerable level.  Maybe they can refer me to a spine specialist too.  Thank you so much, I really appreciate your input.

Lyn

[msmaggie]

Sorry about your headaches!  I have had them off and on, and found that yes, the neck was involved.  A heating pad or microwavable wrap usually helps some.  In my particular case, caffeine is also helpful.  Do tell your dr. about it because there are a number of different things to try.  Are you sleeping on a good pillow?  My headaches sound a lot like yours, but they have diminished in frequency as the year moved on.  Granted, the meningitis made it worse for awhile....glad to see that over with! 
Hope you continue to recover at a good rate.  Just give yourself some time to get things sorted out.  Everyone reacts a little differently to the surgery, and patience is the key. Although...... patience during an excruciating headache is difficult to achieve !! .
Hang in there and let us know how it is going.
Priscilla

[epc1970]

Lyn
Priscilla makes a good point about having a good pillow that will support your neck. I went thru several ones before I settled on a tempur pedic one. Maybe see if your Dr can send you to a Dr that specializes in muscular/skeletal issues if he feels that neck issues are the source of your headaches.  My Dr specializes in non surgical treatment of the spine ie muscular/skeletal and he is a gem! I  hope that you get a quick resolution to your headaches-some of it can be a matter of trail and error to see what will work for you which requires time , patience and persistence to find the right solution. Good Luck!

[Jim Scott]

Lyn ~

I'm terribly sorry to learn about your battle with debilitating headaches, which, I know, can be life-altering (ask Captain Deb).  Although AN patients who underwent the retrosigmoid approach surgery (I was one of them) can sometimes experience post-op headaches due to bone dust contacting the exposed cranial nerves during the surgery, this has been a diminishing issue as operating room techniques intended to avoid the dust contacting the cranial nerves have (mostly) overcome this problem.  I had no post-op headaches and this is the experience for many AN 'retro' patients that have posted on these forums.

For this reason, I agree with your doctor as well as Erin and Priscilla that the cause of your headaches may be from muscle tension, although, of course, this is purely speculation on my part.  I would definitely ask to be referred to a pain management doctor and/or a therapist that can try various approaches and/or pain meds that don't dull your senses.

Please know that you'll be in the prayers of many that want to see you released from the torture of these headaches so that you can continue and actually enjoy your (otherwise) great recovery. 

Jim     

[yardtick]

Lyn,

I'm very sorry to read about your headaches.  I too suffered from the moment I woke up from surgery Sept '06.  It has and continues to be a vicious battle for me.  Please keep on top of it with your Drs and read some of the links Capt Deb posted.   

I truly do feel your pain,
Anne Marie

[cecile k]

Hugs Lynn - I feel your pain! My surgery was over eight years ago but I have had to deal with horrendous headaches as well. What helped me initially was to see a physiotherapist who specialized in headache therapy - she was amazing. She had me wear a neck brace (the kind people wear for whiplash) and I couldn't believe the relief this gave me. I wore it in spurts during the day but not at night. Of course I couldn't stay in this so I was weaned off it very gradually after about 4-6 weeks (can't recall for exactly how long). It really took the edge off the horrible headaches, but I did have to deal with them for quite a while. Now I rarely take meds for headaches but do have to deal with a 'cranky' head especially if there is any stress.

I really wish that I kept some sort of a journal to document my 'headache journey' because it would have been so helpful now when replying to posts such as yours. Wishing you all the best!

Cecile

[GeorgiaMei]

Hi Lynn.  I am so sorry you have to deal with this!  It is frustrating and draining to say the least.  I have also had headaches since surgery and have suffered a lot over the past year and a half since then.  I started seeing a therapist, which has helped and also found something called Mind-Body Stress Reduction.  It's been very helpful for me so far in dealing with the pain and I wish I had found it sooner.  There are many, many resources on it, but there is a website called Dharmaseed.org with free sessions.  It is not religious-based, which made it more accessible to me.  I have found it really helpful in reducing my suffering and improving my outlook. I hope it is helpful to you as well. 

[Captain Deb]

Hi Lawmama,

Sorry about the headaches, and I have a lot of info for you.  Read about cervicogenic headaches on the here:

http://anausa.org/forum/index.php?topic=11368.0

and occipital neuralgia here:

http://anausa.org/forum/index.php?topic=11368.0

Fioricet is not a truea migraine medicine--it is Tylenol with a barbituate in it.  True migraine medicine is more in the triptan familey like Imitrex, Relpax, etc.  There are migraine preventives like Topamax also. Ultram is a mild narcotic pain.  The Fioicet and Ultram can lead to habituation and dependence if taken for a long time.  

I also get pain in the back of the head, neck and have flair ups that are very much like migraines.  You should start keeping a headache journal that includes

1.  Time of day of flair ups

2. Location of pain

3. If you sense any specific triggers like exertion, foods, head position (like working on the computer or anything that involves looking down)

4.  Grade your flair ups on a scale of 1-10


5.  Medications you take for any flair ups and time of day you take it.


Heat packs are great--I have a microwave one that wraps around my neck and goes down my back a little.  I also got a Thermaphore electric moist heating pad.

Cervicogenic headaches can mimic migraines but are different in that they do not respond well to triptan migraine medication--the abortives like Imitrex and Zomig and Relpax.

The most effective medication I have taken has been gabapentin--Brand name is Neurontin.  It is a long term preventive medication which has a side effect of fatigue, but that dissipates somewhat with time.  Right now I take 1800 mg a day.  I am trying to wean off it a little because I am scheduled for Botox injections and I want to see if the Botox works.  I was also on Topamax for 2 years, but the side effects of that med were pretty hard to tolerate.  I also have had 5 or 6 occipital nerve blocks which are injections of long term anesthetic and cortisone right into the old occipital nerve in the back of the head--they are pretty painful, but not as painful as having a headache all the time.  They worked pretty good for me and allowed me to do some things I thought I'd never be able to do again, like travel and go boogie boarding.  Alas, too much of a good thing is bad for you and my nerve block doc said enough for a while.

My Botox, scheduled for the 19th will be administered by my local neurologist.  My surgeon lives across the country so I can't see him for my headaches and he is a surgeon, not a headache specialist.  I don't mean to scare you, but I have been at this for 7 years, been misdiagnosed a few times and I am convinced that my headaches are cervicogenic in nature.  I was having neck pain and occipital headaches/migraines before surgery.  I believe that the position my head was in during my surgery sent them into warp drive!  I have deduced this from a lot of research and attending 3 headache workshops at 2 ANA symposiums.

The surgeons want to just throw pain meds at you and not get to the actual cause of things.  That is the job of a headache specialist or a pain management doc.   Please don't spend 3 years popping pain meds like I did.

Good Luck, Mama!

Capt Deb

[Captain Deb]

Hey, lawmama,

I just saw that you were a few weeks out of surgery!  There is a great chance that your condition will improve with time, so I would hold off on seeking a specialist just yet, but I still want to keep the post up for anyone else who wants to read my advice.

What worked for me somewhat when I was in your condition was a bit strange, but I still use it:
Ice on the back of the head and heat on the neck at the same time.  Dr Love (my hubby) still looks at me like I'm nuts when he askes me to get me an ice pack and heat up my microwave thingy at the same time.

The Fioricet is what I took at first--it relaxes the muscles (the barbituate part) and the Tylenol part relieves pain. You may want to get to a good physical therapist who can work on your neck mobility at this stage.  Just make sure he or she knows you are newly post-op.  A cervical soft collar may help, too, as well as "tractioning" your neck.  Roll up a towel and place it under your neck and lay on your back with no pillow and visualize yourself lying on a beautiful sandy beach.  I know that is really tough when your head is screaming at you.  If you want to talk, PM me and I'll send you my phone #.

Good luck and God Bless!

Capt Deb

[lawmama]

You're amazing, Captain Deb!!!  Thank you so much for all of the good info.  I will do my research today starting with the links you provided.  I'm actually weaning off of the Fioricet a lot, which makes me feel very reassured.  Aleeve seems to be doing the trick today.

Unfortunately, I'm not sure if what I have are true "headaches" because the pain is constant and only seem to get worse when I sleep (or lay on my head).  They don't flare up or come and go like normal headaches anyway.  Again, I'm sure I'll learn more when I start looking into the links.

I am doing much better the past two days, so I'm hoping that things are loosening up a little.  My neck muscles have been very tight, but I've noticed my range of motion has improved a ton and the headaches have improved along with it.  

I so agree with you that I don't want to be just a prisoner to painkillers.  If I can't wean myself off of the Fioricet in the next week or two, I will insist on seeing a specialist so we can try some other things.  Thank you so much for your advice, I truly appreciate it, although I'm so sorry that you have gained all of this information by suffering for so long yourself.  After only two weeks of this, I cannot imagine how hard it must be to deal with for years.  

Lyn

[leapyrtwins]

Lyn -

I'm sorry to hear about your headaches, but glad they seem to be getting better. 

Hopefully as the good Captain says, they'll improve as your recovery progresses. 

And I agree with you, Captain Deb IS amazing!!! 

Jan

[Captain Deb]

Shucks!

I just know that when I was going through the worst of my headaches I was all alone.  This forum did not exist yet in it's present form, with a special place for we headachers to get information and support.  I feel for all you post-op achers, I really do.  Feel free to contact me any time.

Capt Deb

[lawmama]

I simply cannot imagine going through this without this forum.  I think I would be scared to death and probably in a panic.

Great day today!  I got by all day on the muscle relaxers and Aleeve, no need for the Fioricet.  The pain level in my head/neck was very bearable!  I'm trying to be patient and remember that there are good days and bad days.  Be patient.  Sounds easy, but it is so hard!


P.S.  I know I am posting about every little cough and hiccup, but I always appreciate being able to read posts where the poster gives updates on their progress, so I'm trying to "journal" my experience in case anyone in the future cares to read about it.  I've read so many of the past posts that have been so helpful to me!