PT and massage therapy triggers horrific headache

[bridgie]

Now I'm certain of the connection. When I have manual cervical (neck) traction or when the therapist tries massaging my scalp--- within 24 hours I develop a severe headache to the level I can't stop vomitting for several hours. This past week I went to a new therapist. She got the idea I'd be helped by breaking up adhesions in the area I had surgery and the infection site. Its been some time since I've had a therapist try this technique.  I've recently gone off MS Contin, have tried topamax w/out success and was given a rx for Imitrex. I'd not used the Imitrex to abort head pain before but I was hopeful as I've seen it work well. I'm not convinced I have classic migraines but with the notion I likely have post craniotomy headaches with components of migraines (G44.30) accordng to the International Classification of Headaches I figured the Imitrex was likely my ace in the hole so I stayed open and did not warn the therapist.

Anyway it felt good while she was working with me. But soon after I felt awful. It wasn't until several hours later that the pain ramped up. When it did I could tell I was in trouble and took an Imitrex tablet. I've observed Imitrex kicking in fairly quickly for others. I waited an hour and no luck and that's when I began to vomit and began hitting myself with anti-emetics. If I'd known the Imitrex was not going to help I'd have taken the anti-emetic much sooner. Once the vomitting gets started its very difficult to get it to stop. I don't really get nauseated just have the urge to retch. When I threw up my last dilaudid I figured I'd have to head to the ER but finally my husband had me take another anti-emetic and said to try to keep it down for 1/2 hour. Soon I fell asleep and woke up hours later with a diminished headache. I took more anti-emetic and took an old MS Contin for good measure. After awhile I was back to baseline.

These incidents are horrific. I feel like I don't want to live and can't imagine living like this  while its happening. The above incident last nearly four hours. The act of vomitting while I have such great pain only makes it worse due to force and pressure. My new headache specialist does not prescribe narcotics to his headache patients so we don't get rebound. I stopped taking MS Contin so I could follow his regimen whole heartedly. He'd rx'd  Topamax and Imitrex. I tried the Topamax for three weeks. Right away I began losing a drastic amount of weight. My PCP was seeing me every week for a weigh in. Finally he took me off it.  Now I'm pretty sure the Imitrex is not right for me either. This guy does not like to prescribe narcotics. I can appreciate that and am glad to not take narcotics if there is something that will help me not get these episodes. Like many here I get a low grade headache all the time or jabs and stabs or zinger pain by touch in certain places around the surgery site and can simply ignore the pain. But when it turns sour as I've described its impossible to use an avoidance technique and I'm forced to address the problem.

I'm not describing this incident to elicit sympathy and I don't perceive the incident as a failure. I think it gives me new data for the headache specialist to take in and use to tailor my treatment going forward. If this guy continues to "act out" by rolling his eyes when I discuss the possiblity these episodes are related to my four craniotomies and the cascade of complications that occured...that's it, he will no longer be my headache specialist. I'll figure he's a one trick pony and only wants to deal with typical headaches. 

Recently I read a book called "How Doctors Think" and I really recommend this book to help your doctor better help you so they have less of a chance to make cognitive errors involving your care. I'm pretty certain this headaches specialist is on track to make cognitive errors with me and I need to try to get him off that track.  A question I plan to ask this headache specialist is : "What else could possibly be causing these types of episodes besides classic migraines?" and "what is the worst this could be?"   Its a last ditch effort on my part. 
Anyway here's a link to a descripton of this book.    http://www.amazon.com/How-Doctors-Think-Jerome-Groopman/dp/0547053649/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1231710850&sr=8-1

Hope this helps someone.

[yardtick]

Bridgie,

What an ordeal!!  I suffer from headaches, but the one you described is the KING of all headaches.  I hurt so bad when I vomit from a headache.  It is the worst feeling.  I do not like to use narcotics either, but.....there are times when that is the last resort and I will take them.

Good luck,
Anne Marie

[lifeisgood]

I just wanted to share that I've tried topomax as well and I also lost weight on it.  I was a size 2  at my thinnest.
I didn't feel like it was helping my face pain or migraine or trigeminal neuralgia  (whatever you want to classify the pain as)
I've tried other seizure meds as well which didn't help.

I started effexor 3 weeks ago.  I take a low dosage (37.5 mg).  The pain I experienced was nowhere near what you described but it
was bad enough to throw me into a depressed state. I have 2 sons ages 5 and 3.  My youngest has autism and i have to be on all the time.
Anyway, I feel better. I did my research and know that I can't skip a dosage of this medicine and if I go off it, it will take some time.
I have more energy and my mood has improved.  I read that this drug helps with neuropathic pain.  I think it is working. I had a brief pain episode on Monday.  I took a motrin (imitrex works for me as well but others have experienced horrible side effects) and the pain disappeared by the evening. 
Usually, these episodes last much longer.

Anyway, credit to my AN surgeon for recommending effexor at my last appointment.  I was so desperate for relief.
I haven't experienced any side effects except I feel a bit speedy and I woke up in the middle of the night last night.  Nothing a little late night Bravo TV coudn't cure. 
Hope you find relief.  There is hope.  I was almost at the end of my rope with trying remedies and was ready to stop looking.

Take care,
Mary

[diane]

sorry to hear about your awful headaches. I am a post surgery patient of almost 14 years. I too had headaches every day for 3 1/2 years after my surgery until I did a lot of research on cranioplasty surgery. I took that research to my neurosurgeon in Atlanta and convinced him that the headaches were being caused by a muscle being adhered to my dura through scar tissue in the back of my head. He did the cranioplasty in 1998 and once that surgery healed, I haven't had a headache since. I too would have a terrible headache brought on by coughing, sneezing, straining, bending over, etc. Was your surgery done suboccipital or translab? Mine was suboccipital. Now the hole in my skull is feeled in with acrylic so that the muscle can't find it's way through that hole and attach itself to the dura. It's worth asking your doctor about. Good luck
Diane Sale, Georgia

[Captain Deb]

Imitrex in the pill form doesn't do a thing for me. Now the Imitrex shots are a whole different ball game.  Haven't been to the ER since I found those suckers! My miracle drug.  I too lost a bunch of weight right at first on the Topamax, but then it levelled off. It also takes a few months to begin working. May I ask how large a dose did your doc start you off with bridgie? Dr Silberstien told me at the ANA symposium that the way to avoid the adverse side effects of Topamax is to do a really slow titration starting at 10 mg. My other miracle drug.

Capt Deb

[bridgie]

Everyone that has written me back on this thread has helped and supported me immeasurably. Mostly you've given me validation which I'm sure you know means a lot. I've been so disappointed in my new  headache doctor its helped me to receive your understanding. Thank you for the encouragement.