July 26, 2017
I have CHRONIC DAILY MIGRAINES-need DAILY ABORTIVE MEDS. No preventative has ever worked-tried all over 20 years. Now likely have Medication Overuse Headaches due to NEEDING DAILY MEDS! How do I break MOH while I'm still suffering HIMANLY UNBEARABLE PAIN DAILY? What do I use for the pain if I'm to go OFF the MEDS that WORK FOR THE PAIN? The daily pain happened long before I had MOH so it wasn't due to that. Might be in play now additionally. How do I proceed facing excruciating pain if I can't take the daily meds in order to break "possible" overuse
July 27, 2017
You're not going to want to hear this. I got my 2 - 3 x/week migraines down to 2x month by going on an extremely restricted diet and not going out but once a week. Also other stuff like 3x daily cold baths.
July 29, 2017
Can you give me an example of your restricted diet?
December 21, 2017
I have experienced this, its awful and l couldn'tdo a cold turkey.
l went to the Migraine Clinic, very expensive but the doctor prescribed a six week course of Naproxan to take 3 times a day. Also Omeprazole once a day for the stomach.
The course lasted for 6 weeks. I was told to not take any painkillers for another 6 weeks.
The good thing about Naproxan is that there is no withdrawal problems.
This has worked really well for me and l am now very careful not to take anything for more than twice a week.
One does need to continue to find out how to prevent migraines but the Naproxan gave me some time and hope.
July 27, 2017
Hi Sandra! Thanks for the reply. Did you do this protocol as prescribed by a Dr/Neurologist? Or on your own? It seems all the many Neurologists, even Headache Specialists don't have an answer for me when I ask HOW I can break MOH that developed from NEEDING daily med for severe daily head pain. How do I deal with the daily pain while I go off the meds "possibly" causing MOH? It's NOT a bearable kind of pain. Even WITH my daily meds I sometimes need to go to the ER when it gets intractable. No Dr can answer me when I ask WHAT WILL TREAT MY DAILY PAIN WHEN I GO OFF THE MEDS THAT REAT THAT PAIN! They have no substitute! Cold turkey "deal with the pain with no med". Not possible. Can you give me a summary of the protocol you used? And what did you do to treat any unbearable pain when you went off your med? If I had a substitute that would at least ease the horrific pain I'd try it. But no idea of a substitute is offered by any Dr.
August 2, 2017
I completely feel your frustration, I myself walked right into medication overuse headache (even though I knew it could happen, its REALLY hard to find the balance between medicating early in order to be effective & deciding when to suffer I order to avoid MOH) when my migraines escalated from 2-3/week to daily due to stress and southern summer storms during grad school. I'm currently fighting to get back to episodic with the help of my headache specialist but it's a messy tough process. In order to help with weaning off daily NSAIDs/triptans, they started the process with a week long stay in the hospital in order to give me IV DHE; upon release I've been taking a pill form of a relative of DHE. I'm only allowed a rebound abortive 2 times per week and otherwise (the answer to your question) I have a muscle relaxer and a lidocaine nasal spray for the rest of the days. However, the muscle relaxer and nasal spray are not as effective as triptans & NSAIDs so it's definitely rough. But I am seeing some days where the pain is low all day whereas before I had a moderate migraine upon waking every day that often worsened throughout the day so there is progress. I'd definitely talk to your doctor about trying medicines that don't rebound & if you're not already seeing a headache specialist, I highly recommend seeking one out. Best of luck to you, positive thoughts headed your way!
August 3, 2017
No problem, Karen 😀 My inpatient stay was in Chelsea, MI (southeastern MI) through the Michigan Neurological Headache Institute or MNHI. I'm lucky that I live an hour away from it but most people I met at the headache clinic in the hospital were from out of state. I'm so sorry that DHE, lidocaine NS, muscle relaxers & the other things you've tried don't help. I'm not sure what else they'd try for you but I do remember a few patients having a very hard time and the medical team working to improve their situations (nerve blocks were one thing they tried on quite a few folks and I'm sure they have other options) so they're not going to just give you DHE and say "tough it out" if it's not helping. I really hope they take your insurance and that it's feasible or that somewhere similar does. I'm so sorry to hear headache specialists are hesitant to help, that's so unfair and isolating. But know that you're not alone and that even if it's hard to feel sometimes there's always hope that new treatments (ie CGRP meds) or combinations of previously tried treatments will bring relief. I'm rooting for you, hang in there!!
August 3, 2017
Thank you again Holly for the info.
I need to find a good compassionate headache specialist who will listen to me and not waste time starting from scratch-doing all I've already done that failed or do things that have actually harmed me in the past. That Dr would need to understand I won't risk getting WORSE. I'm already overwhelmed.
Then I need to look into an inpatient clinic with him/her that takes my insurance.
I also have had nerve blocks (Botox too). A nerve block injection-by a renowned headache specialist that went very wrong actually CAUSED a damaged temporal nerve as that injection hit or spliced that nerve. I actually jumped into the air off the exam table screaming! I was in a fetal position for weeks. That was 6 years ago and my temple is now the worst pain area I have and the only pain area that sends me to the ER a few times a year. Before that injection I had NEVER had a bit of pain in my temple. Plus, the other Nerve Block injections done in that same series on my left face/head/jaw did not help my pain in those places at all.
I know I sound pessimistic/negative about ALL the things that I've tried over the many years that have not worked or helped regarding meds/compounded meds/topicals/procedures/infusions..but this is all true. I am one of those intractable patients that Drs don't want to treat because my condition is resistant to things that others have success with. Drs want to see successes not failures-although I've never blamed a Dr for a med not working. I know they don't work for everyone. (I do blame the Dr who did the bad Nerve Block injection though! But I just never went back to him after he said that "never happened before" and diminished my excruciating pain. He offered no relief ideas. Very defensive. It's not like I was in any state of mind to sue him! I was simply in agony then and still am 6 years later. I'm not a person who even thinks of suing Drs. I don't have the energy or inclination.)
This daily pain with no end in sight has been the ruination of my happy vital life. All I have is the daily meds regardless of MOH-I can't survive without the meds that actually DO work.
And my fervent hope is that the CGRP meds do help me when they are available. I have to hang in there until they do. God help me if even those don't ease the pain and/or frequency. I fear what will happen to me if they don't. I'd be out of options.
December 21, 2017
Thanks for your story of how you were helped. I’m happy for you!
I’d ask you: Were you initially on painkiller meds (my only option for DAILY headaches that works but eventually may have contributed to/added to the mix>MOH).
If you were on pain meds daily, did the Headache Clinic first deal with that withdrawal? How did they do that? I know Naproxen wouldn’t help that withdrawal.
I wonder if Naproxen treatment would help me if I’ve tried many of the NSAID RX meds-even a month on Prednisone, IV Prednisone, Toradol shots, Toradol Nasal Spray (Sprix) and other NSAIDs. These anti inflammatory meds couldn’t ease the pain which is NERVE-RELATED. Yet, none of the anti-convulsants, nerve-calming or many other RX meds for nerve pain have helped my pain at all.
I’ve been told I’m a “poor responder” to many meds that “normal responders” have success with-after a DNA test revealed this. So I’m pretty unlucky in this regard too!
So, if I’m to pay for a hugely expensive hospital stay to break the MOH, I’d need to know if they first would supervise carefully taking me off all pain med that is keeping me “sane” given the extreme daily pain it eases.
Then, they’d have to have a plan in place to use for someone who has NOT had success with DHE in any form. And NOT had any success with the usual RXs for nerve pain. NONE of the preventatives-tried them ALL-have helped even a little! Some even made my pain WORSE. Others had side effects that were as unbearable as the pain they were supposed to treat and disabled me completely. (These meds are only successful with a minority of patients anyway-the “lucky” ones!)
I’ve worn myself out trying and trying and trying to find a good headache Dr or even a good neurologist. They are at a loss as to how to help someone like me. So they give up after a trying their usual “bag of tricks”.
I keep trying though. Appointment after appointment with potential new Drs with potentially new ideas to try to help me. Only to always leave feeling so crushed with disappointment that they have nothing to offer and no interest in going the “extra mile” to try to help someone so desperate for their help.
I’m living in a virtual “prison” of my own body. I have no enjoyment of my life. Even with the successful pain meds daily, I’m STILL in some pain every minute of every day. I’ve accepted that I am never going to be “pain-free”-my expectations are realistic. I understand that no med or procedure will eliminate all my pain. I just want to NOT NEED ABORTIVE/PAIN MEDS EVERY DAY in order to function. And NOT NEED DAILY MEDS THAT POSSIBLY CAUSE MOH/MORE PAIN.