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.

1,556 Members

3,347 Posts

0 Online

rachel11180 05/12/2015

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.

jcpmoore 05/13/2015

I can totally relate! About the only thing that gives me relief from the really nasty migraines is oxycodone, so I understand both the need and the concern. I try hard not to use it more than once per week, but when the pain is at its peak, you need relief.

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!

YvetteK 05/14/2015

There are a few people in this group that are in the same boat as you in terms of where they are in treatment. I was once where you are. I had GP's who didn't know what to do with me. I had a headache specialist who didn't know enough and so he didn't know how to treat me. I've been having migraines since I was 7, and it's a hellish existence.

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.

LynnJ55 05/14/2015

I agree with YvetteK, finding the right doctor is so important. I hope to be able to change insurance plans next year, because Kaiser's idea of migraine/headache management in my area is one single neurologist, who is actually a D.O. After prescribing so many off label treatments and botching a Botox treatment, she literally threw up her hands and asked me what I wanted from her! I've actually had 3 doctors in the Kaiser system tell me that. They have no pain management program either, and refuse to refer me to a migraine specialist outside of their area. I'm on a pain contract for daily morphine now, and my GP thinks I'm "cured" because I don't see her any more.

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

YvetteK 05/14/2015

It will take some research by you. You want to took for headache specialists who are out there, and you want to look on the computer for the ones who got good reviews, I mean REALLY good reviews. Tell them about all you prior treatment and also tell them that you current doctor is basically shoving you out the door because he has no clue on how to help you any longer.

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))))

rachel11180 05/14/2015

Thank you for the responses everyone. I really appreciate it. The doc I am seeing now just gave me Botox on the 7th, and things have been ever worse since. I had to go to the ER last nite for an infusion and some Dilaudid because I had such spasm in my necks my head was twitching uncontrollably. I had been awake since Monday from the pain. Last nite I was able to get a bit of sleep, which was nice.

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

YvetteK 05/14/2015

you need to give botox a chance. The very first time I had botox, my migraine after was so unbelivably bad, I didn't know what to do with myself. The pain laster for 5 days. The second time I had it done, he gave me steriod in case the pain came back. He also gave it to me the third, but by that time, I had no painl funtunatey I didn't kneed them the third time, it's gets easier the longer you get it.

rachel11180 05/15/2015

Thank you YvetteK! Much appreciated!

22Lynn 05/16/2015

I've just done my third round of Botox shots. I get them every 3 months. They did work pretty well this time. The first time I had almost no difference. The second time my headaches were worse for 6 weeks. The neurologist said he had upped the shot from 175 to 200. So we went back to 175 and I got some relief. I agree with Yvette that Botox is a long term process.

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.

LynnJ55 05/16/2015

Did anyone here who tried Botox get the "Spock eyebrows"? My experience with Botox was less than stellar, as I've noted in the past. One eyebrow immediately ended up crawling up my head like a caterpillar, the other lowered itself over my eye. I looked freaky for about a month! Thank god my bangs covered most of it.

YvetteK 05/16/2015

Lynn, did your doctor have you move your eyebrows up and down before he injected your forehead with botox? My neurologist had me do all kinds of facial movements before he injected me, so he would know where to inject me to have the most natural look. I know that's not the goal of botox for migraine purposes, but it's nice when the doctor takes the time to make you look good too.

22Lynn 05/17/2015

My neurologist also does that with the forehead and eyebrows.

LynnJ55 05/17/2015

She did a row as fast as she could across my forehead, which hurt like hell, and behind my hairline on my neck. No facial exercises of any kind. What it did to my neck muscles, after admitting she should have read my chart better, is a story for another thread. Yeah, she's Kaiser's "headache specialist".

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

rachel11180 05/17/2015

Thank you so much everyone for all of your responses! My doctor told me that Botox works in 80% of patients, so I am really hopeful. He also said if I don't experience a lot of relief the first time that he will probably do it again to see if it helps the second time around. I have noticed a bit of a decrease in the pain in my forehead, but the pain in my neck and the back of my head that travels to my eyes is much worse. My neck also seems to be very weak, and I have had tremors constantly since the 9th; two days after my Botox. Hoping this goes away with time? Has anyone else ever experienced this?

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!

thelmanlouise 05/24/2015

Hi Rachel:
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.

22Lynn 05/25/2015

I've done 3 rounds of shots now. My neck felt very weak after the first set of shots, but has gotten better with each round. I have my next round in late June. If I miss my massage my headaches come back, but hopefully time will help. My headaches are much less severe than they use to be.

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.

Join the Conversation