This post is so I remember to tell the DR when my first major headache returned after out last Botox treatment on Nov 11th. I woke up about 5:45 with 7.5 level headache. I was able to go back to sleep, but it remained upon waking up at 7 am. It will be a phenergan day, as I am already feeling nauseous.
Tuesday 1/25, went to someones house to home teach them. She is a smoker, while there headache went from mild/ almost non-existent to a level 8. Came home and took phenergan to control nausea. Headache remained until Thursday when it went away.
Friday, no headache, but could feel base of skull was hurting quite a bit, so at my wife's suggestion I used Flexal 54. Within 20 minutes, went from no headache to a pain level 7, with lots of pain behind left eye. Saturday was a moderate headache, improving as the day went on. Averaged about a pain level 4.
Sunday woke up, in severe pain, level 9, but surprisingly without nausea in the beginning. Was light sensitive most of the day. Used muscle relaxers 3 times throughout the day. By end of day pain level only decreased to a level 7.
Since then this week it has bounced between a 2 and 6. Often intensity varying within minutes from previous pain levels . Little pain, lots pain and back and forth throughout the day. This not the norm for me, and may be due to Botox wearing off.
Hello Denise, I found this blog through your other (scrap/craft) ... you visited my blog hop for Valentine's Day cards. First, thank you! Second, THIS blog has such meaning for me; I WAS a long-term sufferer of migraines. For 18 YEARS I treated with 2 different neurologists. My migraines started with a STROKE I had six days after the birth of my daughter, who is now 25. During the course of my migraine treatment during those 18 years, I also had 3 additional strokes. My list of medications was FAR longer than yours; I've had so many MRIs, MRAs, CAT scans, x-rays, PET scans, you name it, I should be glowing in the dark.
ReplyDeleteFor one VERY long stretch of about 6 months, I had one banger of a migraine that did not quit. I was taking 12 different Rx's a day, some to start the day, some to end the day, some to get thru the day. I could barely think, walk, talk or drive and still, I worked a full-time job. I HATED "living" if this was "life." I thought about suicide constantly just to escape the pain. NOTHING worked. Not ice packs, not biofeedback, gluten-free diets, NOTHING, nothing ...
Finally, my neurologist went on strike. Literally. It was a showdown about medical malpractice rates in the state of Pennsylvania. Instead of walking a picket line, she took the opportunity to go on vacation. And left no one on call. I had a stroke, and needed her. Fed up, I quit her.
I got on a LONG LIST to get in as a new patient at the Jefferson Headache Clinic, Thomas Jefferson University Hospital, Philadelphia. The department head (no pun intended) is Stephen Silberstein MD. Dr. Silberstein would go on to be president of the American Headache Society, etc. In other words, he knows his stuff. It took me 6 months to get in to see him. He only takes on the most complicated cases, and he was thrilled to take on mine.
He saw me every 2-3 weeks for 8 months. Headaches involve peeling the layers off an onion, so to speak. The core of your headache is that it's not just one, and there are roots to each of them. Many, many roots, many many headaches.
The FIRST thing he did was get me to detox all of the meds the former neuro had me on. I was a long time user of Inderal. For ME (and maybe for you), Inderal was the WORST thing I could have taken. Silberstein told me that if I continued to take it I'd be dead in 18 months. It's now 8 years later and guess what -- NO HEADACHES!
Yup, he tried me on all sorts of other meds too; some worked, some didn't. I only needed one series of Botox treatments (27 shots) to break the last of the minor intractable headaches (a 2 on a 1-10 scale ... I could've lived with it).
What worked for me was a VERY high daily dose of Verapamil, a cardiac drug. At one point, I was taking 880 mg (11 x 80mg pills) per day. I now take 320 mg (4 x 80mg) as a preventive. I take Effexor XR (anti-depressant) also as a preventive. That's IT. For general well-being, prescribed by family doc not neuro, I also take Lipitor and Diovan for high cholesterol-high blood pressure ... minor doses of each just to keep everything in check. When I feel a headache coming on, Fiorinal w/Codeine -- 1 cap. I took 9 of them in 2010, none so far in 2011.
At any rate, I read in one of your posts that you were considering going to a specialty clinic in Portland. PLEASE DO IT. Get yourself the best care available, even if you have to go long-distance to some place. I was ready to travel to Chicago, anywhere ... GET EXPERT HELP. I toyed around with a "good neurologist" at a teaching hospital for 15 years; it turns out, she never even HAD a headache, even a minor one, in her life! C'mon!!
Be well. Know this stranger cares!!!!