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.
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Hi... I was just looking for support groups and came across this site. I was just diagnosed with NHL specifically Folicular Lymphoma (Large B-Cell type) and I guess it would just be nice to talk to people who have been through this. I'm 28 F and I'm a new mom, my life has changed drastically in the last two years and now this diagnosis has really gotten me down...I had a CT scan done last week...
Have you tried taking anything for prevention? You mentioned seizures, so I would try talk to the doc that handles your seizures. Many anti-convulsants are also known to help prevent migraines. You might be able to get switched to one of those for your seizures and it might help. I just started one a few weeks ago and am having fewer migraines at least. I'm sure it's no coincidence that my migraines started only a few years after I came off my seizure meds years ago.
HTH. Hugs!
This is my advice to those who feel they are at the end of their rope: Find a good HEADACHE SPECIALIST. Not just a neurologist. Neurologists in general take some courses in headaches, but they are not up on the latest studies, and medications to help headache patients. You need to find someone who specializes in headaches. The best one are associated with teaching hospitals.
I've tried virtually everything under the sun, and so far nothing has helped, but my doctor never even hinted that I need to see someone else. They would never pawn off their patients like that. I can't even imagine what that would feel like.
I swear, there ARE other treatment options out there. You just have to find a doctor who knows about them and is willing to try them.
All of this rant (sorry) is to say don't give up finding the right kind of specialist to treat your pain. It looks like you've run the gamut of treatments, conventional and otherwise, like most migraineurs. I'm sorry you are in so much pain, and really hope you can find something that works.
Take care.
Lynn
You will find someone eventually who will take the time and treat your correctly.
I will send good vibes your way. And if you ever need to talk, just send me a message. I'll be happen to go into greater detail about my roller coaster ride and how I get through it.
I do wish you the best of luck. ((((Hugs))))
It is wonderful hearing from you all, although I wish you didn't have the pain and the experience to relate to! Migraine is miserable. I've tried a bunch of abortives as well and am hoping this Botox treatment works.
Thank you again everyone
My migraines have been so bad I was on morphine for quite awhile, it only took the edge off. Finding my triggers has helped. I hope you find something that works for you. Healing wishes to you.
Rachel, Botox has been a godsend to the majority of migraine sufferers, from what I read. And it can take a while, or more than one treatment. And I tend to be the one in 99 who always gets the side effects!
Don't give up, there are good doctors out there.
Lynn
LynnJ55; my doc did have me make facial expressions before he put the Botox in. I am like you though, if something won't work or there is a side effect I will get it. My mom calls me her little enigma. :) Once I went deaf for two days from taking birth control. LOL
By the time I see my doc next I will have been off the Dilaudid for 6 weeks. If he is right, and I have medication overuse headache as well, then I should be feeling better by then. If he is wrong, hopefully he will prescribe something for the pain.
I don't know if this works for anyone else who is in constant pain, but I like to set goals for myself. I tell myself, all I have to do is make it through the next hour and then I will go from there. Sometimes it is minute by minute, but when you have no control over your life it seems to help to be able to trick yourself into believing that you have some control. I just got a call today from a non profit organization that wanted to hire me as their executive director because they saw the work I did as the ED with another non profit before I lost my job due to all of this. It was so hard turning them down, but I know I am not in a place to succeed right now, and I don't want to set myself up for failure. Hopefully everything will work itself out soon.
Thank you again, everyone, for all of your support. It is really nice being able to talk to folks who know what I am going through. You all are wonderful, and I hope you had a fabulous pain free weekend!
I started botox 4/13/15. My HA specialist had me moving my forehead all kinds of ways before she put that stuff anywhere. Since the 1st time, I have gotten HA just about daily (except 1-2 days) until 5/15/15.
Not sure why that date. I decided to also try cranial sacral therapy 2x/weekly and gentle massage (if I need it) from the same person. My first "gentle massage" from another place a friend recommended made my neck and back hurt for 4 days! Just have to keep trying new people! When the HA's became daily after the botox again (they have for periods of time off and on) , I decided I need to try everything in my power again. My preventatives were not helping, my abortives were not helping. And I do not want to go onto stronger narcotics as I cannot function at work that way and would certainly get rebound HA's from them. I even tried stopping all my abortives after the botox thinking some could be rebound. That did not make a difference.
Please keep trying!! I read your story and I see so much of my story in yours. Been through so much and continue to everyday. All of this group is awesome here and very supportive. I think the cranial sacral therapy is helping. It is NOT hurting! And my migraines are not happening everyday/several times per day.
Please keep in touch!
(((hugs)))
Carol :)
PS: I will try some acupuncture if this is not helping.
I also tell myself if I can just get through this hour, this 15 minutes, I'll be o.k. somehow. It does work.
Good luck.