Maybe you can help?
I have had a migraine for the weeks straight. The pain level goes from mild around 4 on pain scale to 9 where all I want to do is pull my brain out. I have tried the following migraine prevention; pamelor, topamax, zonagran, and propranolol. I am currently taken zonagran and propranolol. I have taken the following abortives; Macao, amerge, imatrex and a migraine cocktail which included bendadryl, toradol and one Phenergan. I also take magnesium, B3,B13, melatonin, COQ 10, flaxseed, and Vitamin D. I also had a series of steroids after an initial injection. I am now on fiorcet with codein. I have cut everything out of my diet just about. No chocolate, no sugar, no MSG, no cheese, no milk, no nuts, no citrus, no soda, limited caffeine. I don't have periods because I take continuous BCP. The pain is in the same place it doesn't move it's like a straight line going from above my right eye straight through my brain two res the bottom of my neck. I thought it might be related to medicine overuse so I went about a week with nothing. That didn't work out and that's when I ended up getting the migraine cocktail. I don't know what else to do does anyone have any suggestions I am willing to try almost anything I can afford. Insurance won't pay for Botox or surgery so that's out. Thanks in advance for any ideas and sorry for any misspelled words I'm pretty medicated.
I'm so sorry to hear this is happening!
If you're food sensitive (I am too) have you cut out the tricky names MSG hides behind? (Like we have to cook basically all my food from scratch and that stopped some headaches.) Bananas? Fresh yeast? Vinegar? Alcohol? Tomatoes? Mushrooms?
I thought I was having MOH too and we stopped painkillers/triptans for awhile (they weren't working anyway) but it was for longer--7 weeks. Now they work maybe 1/2 the time. How often were/are you taking any kind of painkiller/triptan?
Have you tried occipital nerve blocks? You mentioned the pain goes down your neck. Like the back of your neck? Nerve blocks don't work for me, they just make my head really pissed off. But they work for some people. My insurance doesn't cover them (which sucked when my doctor kept wanting to try them) and one doctor charged like $325 for both sides. Another charged $400.
Another option, which my insurance does cover, is an infusion. It sounds like you maybe had one (the migraine cocktail?) You can get all sorts of stuff... DHE, toradol, zofran, benadryl, steroids, depakon, magnesium, etc. I'm sure I'm forgetting something. When I was in MOH paranoia mode (since I was pretty sure that was what was causing my 2 month unstoppable headache, I just had them give me depakon and magnesium. Zofran would have been fine too but I don't typically get nauseated. Also I usually have to go in 2-3 days in a row for it to do anything. It took awhile, and it SUCKED having my head hurt and not taking anything, but gradually it got better, and now when I go, if it's not too horrible, I get depakon, magnesium and fluids. If it's bad, I get that plus the DHE and zofran (since DHE can make you nauseated.)
When I was originally diagnosed with migraines I had to go on a medication holiday. Wasn't a very fun holiday and lasted about two or three months were I couldn't take any meds. My migraines were mostly under control I mean I always had one but not this bad for this many days in a row without it feeling any better. The migraine cocktail was injections not infusions and for some reason my doctor is anti DHE. I've mentioned it to her a few times but she refuses to use it. I am on a low carb diet right know so no sugar and no carbs which leaves out bananas yeast tomatoes and alcohol. Not sure about vinegar I do t add it to anything and I sometimes use mushrooms but not regularly. I was only taken the pain meds maybe one a month until this killer headache and since the cocktail I take something about every other day. I wait till I am in so much pain I'm crying and then I take something. I can't do nerve blocks because they are considered a medical procedure and I haven't met my massive deductible yet. The pain isn't really in my neck looking at a skull it appears to be the Occipital prominence on he right side.
Ugh, I'm so sorry you're having such a terrible time with this. Have you tried depakon and magnesium in an injection/infusion? Sometimes just the two of those will help to break up the migraine for me (albeit slowly.) I also often have to repeat the injection/infusion several days in a row and do intensive resting. Everyone is different. I found for me that using pain relief like toradol/NSAIDs and triptans and even the steroids they tried in the ER was making me crazy because it would help for a few hours and then the migraine came right back. To me, that made me wonder if my body had gotten to used to those types of drugs and needed a break. (But I did not go to medical school, and my neuro--who I don't particularly think cares about me--disagreed-- so take it with a grain of salt.)
Nerve blocks are given right to the occipital nerve, so if that's what's bothering you, they might work, but I understand if you can't do them right now you can't do them. They were very costly when we tried them, and unortunately just made my brain angrier. Do you know what your other triggers are? Light, sound, weather, reading, crying, stress, you mentioned diet... have you cut processed meats as well?
I think I have found something that is working. It is not the. Eat but it has made things much more manageable. As long as I adhere to the schedule my pain level stays between 0 and 3. After much digging and research on my own I found out about a type of chronic headache often confused with migraine called Hemicrania continua l. You can find more information here if you want
On top of chronic migraine which I still have I also have this. It only responses to one medication Indocin which I now take 50mg four times a day. I also now melatonin 10mg at night and have increases my zonagran to 200mg at night. The indocin took about a day and a half to work but the headache is almost gone. I did have one migraine but it responded perfectly to maxalt. I hope I can get the pain to go away completely but i have to at this point be excited about my progress. I can't hardly wait for some of the new meds coming out soon and as soon as I have the funds I'll give the Botox or nerve blocks a chance but at least for now I don't want to remove my brain.
