Migraine Headaches Support Group
Migraine is a neurological disease, of which the most common symptom is an intense and disabling episodic headache. Migraine headaches are usually characterized by severe pain on one or both sides of the head and are often accompanied by photophobia (hypersensitivity to light), phonophobia (hypersensitivity to sound) and nausea.
Greetings all. Wondering if anyone has some advice for me. I've had migraines since 1999, hemiplegic migraines since 2003/2004. I recently started having seizures as well, and my neuro isn't sure if this is due to the migraine or something else.
I've tried just about everything there is to offer. My old neuro, who I saw for 10 years, told me last year that he didn't know what else to do for me and to find another doctor. Since then, I have seen three different doctors, and they all said my case was "too complex". I am seeing a new doc now that is trying Botox again. I just had it on 5.7.15, and he is hopeful it will help this time.
I was taking a large amount of narcotics to deal with the pain. Fentanyl patch, Oxycodone, Ativan, Zanaflex, Dilaudid, etc., but my new doc told me those meds can cause medication overuse headache. So I voluntarily came off everything but the Dilaudid in a month's time. Now I am more aware of my surroundings, but it means I am more aware of the pain as well; which is overwhelming. I went from having relief with all of the pain meds (bringing me down to a 5/6) to a constant 8/9. Now my doc says the Dilaudid causes headaches as well and won't prescribe anything, and said the Botox should start working soon.
I used to be able to go to the ER and get an infusion cocktail that would help with the headaches, but now my ER has changed their protocol so they only give Migranol and Benadryl via IV. The infusion center in my town is reserved for cancer patients, so I can't get set up their either.
I am in so much constant pain, and since the Botox shots the pain that originates at the base of my skull and travels up my head to where it explodes in my eye has gotten even worse. I am hoping this subsides with time.
Sorry for the long rant. I just wanted to give a little background. Does anyone have any suggestions for me? Any suggestions on how to talk to a doctor that doesn't want to prescribe pain meds? If this Botox works and I never have to take another narcotic again I would be thrilled; but until then I need something, anything, to help with this pain. I can't sleep, can't focus, can't work. I just had to apply for disability, but am hoping something changes for the better and I can withdraw my application.
I've tried all of the triptans, chiropractic, acupuncture, massage, biofeedback, tens unit, physical therapy, plus a slew of other treatments and meds I can't even think of off the top of my head. I had a shunt put in in 2012 to relieve pressure headaches as well.
Any advice on treatments or how to talk to a doc about getting some relief would be greatly appreciated. I know the stigma surrounding narcotics, and I know if I take too much it can do more harm than good. But unfortunately it is the only thing that provides relief and I think I might go crazy if I don't get some sort of relief soon.
Thank you for listening. I sincerely appreciate it.
I've tried just about everything there is to offer. My old neuro, who I saw for 10 years, told me last year that he didn't know what else to do for me and to find another doctor. Since then, I have seen three different doctors, and they all said my case was "too complex". I am seeing a new doc now that is trying Botox again. I just had it on 5.7.15, and he is hopeful it will help this time.
I was taking a large amount of narcotics to deal with the pain. Fentanyl patch, Oxycodone, Ativan, Zanaflex, Dilaudid, etc., but my new doc told me those meds can cause medication overuse headache. So I voluntarily came off everything but the Dilaudid in a month's time. Now I am more aware of my surroundings, but it means I am more aware of the pain as well; which is overwhelming. I went from having relief with all of the pain meds (bringing me down to a 5/6) to a constant 8/9. Now my doc says the Dilaudid causes headaches as well and won't prescribe anything, and said the Botox should start working soon.
I used to be able to go to the ER and get an infusion cocktail that would help with the headaches, but now my ER has changed their protocol so they only give Migranol and Benadryl via IV. The infusion center in my town is reserved for cancer patients, so I can't get set up their either.
I am in so much constant pain, and since the Botox shots the pain that originates at the base of my skull and travels up my head to where it explodes in my eye has gotten even worse. I am hoping this subsides with time.
Sorry for the long rant. I just wanted to give a little background. Does anyone have any suggestions for me? Any suggestions on how to talk to a doctor that doesn't want to prescribe pain meds? If this Botox works and I never have to take another narcotic again I would be thrilled; but until then I need something, anything, to help with this pain. I can't sleep, can't focus, can't work. I just had to apply for disability, but am hoping something changes for the better and I can withdraw my application.
I've tried all of the triptans, chiropractic, acupuncture, massage, biofeedback, tens unit, physical therapy, plus a slew of other treatments and meds I can't even think of off the top of my head. I had a shunt put in in 2012 to relieve pressure headaches as well.
Any advice on treatments or how to talk to a doc about getting some relief would be greatly appreciated. I know the stigma surrounding narcotics, and I know if I take too much it can do more harm than good. But unfortunately it is the only thing that provides relief and I think I might go crazy if I don't get some sort of relief soon.
Thank you for listening. I sincerely appreciate it.
Thank you for your response. Sounds like we have been through a lot of the same things. My doc gave me some muscle relaxers to help with the spasms, so hopefully that will help things. One weird thing I have noticed is that my doc doesn't have me currently on any preventatives. I used to be, but he took me off of them. He won't give me abortives, other than Torodol, which doesn't always help that much. I guess he is hoping the Botox will do the trick. I see him again on June 1; hopefully he will be able to figure something out then.
Lynn- Thanks for the info. I am willing to do anything, so if another set of Botox is recommended, I will try it. Thanks for the advice!