Welcome to the Rebound Headaches Forum
Welcome to the Rebound Headaches Forum
LORANNE – you may be right! Have you talked to your doctor about the chance you might be in MOH? (Medication Overuse Headache)
I wish the Migraine Community would go back to calling MOH Rebound Headaches, because that is what they are. If one is having so many headaches/migraines and is using OTC or prescribed medication so much that their body’s system cannot assimilate the drug, and it becomes overwhelmed by the medication itself, or over sensitized so much that it causes another headache/migraine, this is a rebound headache. It usually cannot be stopped by more medication – at least in my experience. Perhaps if one goes to the ER and gets a shot of Demerol, or whatever they are doing these days, this will kill the pain. I get rebounds from all opiods, so I never go to the ER. Rebounds are migraines to be avoided at all costs, because, again from my experience, I have to wait it out with ice and heat therapy for anywhere from 36 to 72 hours at a 7-9 pain level until the headache breaks. With most headache meds, because my system is so sensitive from years of trial and error, I never have any idea when this point will be reached, but when it is, I know what I am in for, and will never go near the drug again, no matter what doctor wants to give it to me.
I guess my major complaint to “MOH’, and I have posted this elsewhere, is that the very term puts the onus back on the patient, making the patient responsible for their own disease. This is one of those “new age” ideas that I for one am completely against. I have not heard here before, and don’t think it has any place, nor do I think it was intended, but here it is. Even if a person follows the directions to the letter, or uses less than proscribed, that person’s system can still rebel and cause a rebound headache for some reason that no one, not even the migraine specialist, pain doc or patient will understand. It is part of the frustration and difficulty of living with this particular disease. Calling this “MOH” just makes it worse.
I personally am drawing my line in the sand and I won’t use the term. Please advocate on our behalf to get rid of the term “MOH”. It may be a “politically correct statement” that solved some disagreement between factions of the medical community at their yearly get-together in Hawaii, but it does nothing but make the patient feel bad. You, our advocates, do a great job for us. We are all grateful for the work you do. I make all my doctor’s read Teri Robert’s book before I will work with them, because of all the books I have read, and I have read them all (that I know of) it is the most straightforward, clear, no-nonsense book written for patients, and does not gloss over anything.
I am sure MOH was coined by a doctor at some conference to – as I said – make nice between old school and new school treatment theories. Please do something to get rid of the term. It just puts all of us back in the dark ages.
Thank you for listening to one tired migraineur.
hangingbyathread – Believe it or not, there has been a lot of discussion lately within the medical field, headache medicine in particular, about the term MOH. It was actually coined to try to take away the feeling that it is the patient’s fault. However, it depends on your perspective I think. I find most patients hate the term because, like you, they feel that they are being blamed for *overusing* the medicine.
Rebound is not quite accurate either however, so they aren’t going to be using that term either. The fact is, in MOH, the brain actually undergoes changes that result in the medicine actually causing the pain instead of treating it. http://bit.ly/KD3cKi It’s not really rebound either, although rebound falls within the spectrum. I’m right with you in truly wishing there was a better term for this that would put patients less on the defensive.
The fact is, we are not abusing the medicine, we are using it to treat the pain. It is an unfortunate neurological, physiological change that happens that causes the problem, not the patient. If we had no pain, we wounldn’t take the meds. Further more, most patients only take the recommended dosage.
HOWEVER, when one looks further on the bottle, it always has a statement something to the effect of… if you use this medicine for more than 5 (or 3 or whatever) days, see your doctor. This is there to help prevent these problems. We just forget that the labels tell us this and continue to use the meds to treat our intense pain in attempt to get our lives back on track.
Unfortunately, Demerol will also cause MOH or rebound. So does DHE and other meds and supplements that are sadly not mentioned in the link above. The best thing, as always, is to abort the Migraine process as soon as possible, or prevent them in the first place. Then we don’t have to worry about pain meds causing rebound, MOH or chronification of Migraine which many of these meds help to happen.
If you had to come up with another term for MOH – what would you like it to be? If our doctors can’t come to agreement on a term that more accurately describes what has happened to us, maybe we should see what we can come up with!
One other thing I would like to mention that is rarely discussed – the patient who has a comorbid condition that requires the daily use of meds that eventually can cause MOH.
I am one of these patients caught between a rock and a hard place. If I don’t use them, I am bedridden and praying for unconsciousness. If I do, I risk MOH which can be as bad or worse than the original Migraine I was suffering from. I go to my rheumatologist who tells me I HAVE to take my meds or risk permanent damage to my body. Then I go to the headache specialist who forbids me to use any of them because it could create these unwanted changes in my neurologic system.
What’s a girl to do?????????
Hi Ellen –
I too suffer from many co-morbid conditions that require other medications which cause the increased sensitivity in my system -and this is over a long period of time. As I get older my system is more sensitive, and I have no idea whether med A will work if I take it once, or twice, or beyond that. I rarely get into a situation that the rebound migraine is caused by taking too much of a med. The only meds that have been in that category for me are opiods – morphine, demerol, dilaudid specifically. And although I could go up on the dosage to get rid of the pain, getting rid of the drug in my body takes much longer each time I would take it, the net effect being a migraine that would last for 60-65 hours. This is enough to make anyone jump out a window and believe me I have come close enough times for more reasons than just the migraine. I sympathize with you and am probably in very much the same place although our co-morbid issues may be very different.
I don’t know what to do. I am no longer talking openly about my migraine disease because it seems it makes everyone else uncomfortable, and not know what to say. They want to see me when I am happy, full of energy, and the life of the party. They have no idea what it takes out of me so they will not have to deal with my reality. I just got a lecture about that 2 nights ago, and tonight at dinner an old friend agreed with that. Not that I do not understand the point, it just makes my world smaller. But I am trying so I can be around other people. There I think the onus is on me to understand others may not have the strength, or the capacity to deal with uncomfortable areas, and I don’t have to talk about them outside of my migraine forums. That is what the forums are for, right?
As to the “rebound” vs “MOH” thing I will come back to you with another term, or at least a suggestion of one, or two. I am one of the people who would wait 8 hours to see if it really was a migraine before I took any meds because I did not want to overuse them. I suspect there are many of us out there. Chronic pain sufferers usually have a high pain tolerance. So I will give it some thought. I just don’t like being blamed for something I can do nothing about.
As you said, what’s a girl to do ?????????
I’m right there with you on rebound migraines and also dealing with the fact I didn’t know taking ibuprofen could increase the risk of getting rebounds. I’m stuck in a migraine now and can’t get it under control even with tripans or pain meds. I don’t know what to do and hope you find something that works for you. Good luck and best wishes
HANGINGBYATHREAD – Just because a patient has MOH doesn’t mean you should be blamed for mis-use of pain or Migraine meds. There is a difference physicians tell us, between overuse and mis-use. I really hate the term myself, and there are specialists out there who agree with us. It seems there is constant discussion of what really IS the right term to use, and in fact it may change again soon.
The brain is very *plastic*. This means it changes as the body and environment change. This goes with those of us with chronic pain issues. Our brains change how pain is processed. We didn’t do it on purpose and have no control over it. Some of these changes are triggered by use of pain and Migraine meds however. That is something we can’t get past. The question becomes how to walk that fine line without falling over on one side or the other? Either we’re in unbearable pain, or we end up in MOH in unbearable pain.
It’s sad that our doctors don’t explain the dangers of MOH to patients so this could be avoided, but the fact is, patients treat their pain WHEN they are in pain, and because nobody bothered to tell them the ramifications beyond addiction, they end up in trouble. If there is blame, I have to say that I tend to blame it on those handing out the prescriptions without also dispensing the education.
As to pain tolerance, physicians scratch their heads as they have patients who suffer allodynia (pain without painful stimuli) and super sensitivity to head pain, yet these same patients go on and on talking about their high pain tolerance. Research done on the subject does not bear this out despite anecdotal evidence to the contrary. When patients are confronted with painful stimuli, we tend to have less tolerance to pain than the *average Joe*. Yet many of us have stories such as mine about trying to set my own hand after breaking it, being sutured without being numbed up, or being kicked in the face by a horse and going on about my day. The *average Joe* would never be able to do any of those things, yet I did them while carrying on conversation. It doesn’t make a lot of sense, does it?
Hi Ellen –
No it does not make any sense, and because, like you, I am a horse person, i have gone through similar physical pain situations. I broke my ankle in 3 places, and I would not let anyone cut off my handmade boots so I held onto the bed, one aide pushed from the top and the other wiggled and pulled from the bottom. I got my foot and leg out of the boot as it swelled to twice the size. Yes it hurt, but not enough to cut the boot. And I have had other breaks, bruises, kicks, etc. and gone about my day just as you describe.
The alllodynia pain is quite different. I can tolerate it just fine, and use only ice for relief, but it is intense. I never knew what it was, and was surprised it was nerve pain without painful stimuli. I don’t quite understand this, but, it is very noticeable when it arrives, and I definitely do not wash my hair during that period.
I agree that existence of rebound or MOH headaches are the responsibility of the doc to explain, especially for those of us that have daily migraines. Even though they give us guidelines for use, everyone is different and as patients monitoring our own meds. I may have to use any med less often to not run into a rebound cycle or MOH cycle. I liked “Anonymous'” comment saying she was in a rebound “cycle”. When I was hospitalized to break my everyday migraine (never happened), most of the people there were on IV DHE to break out of rebound cycles from OTC meds like Excedrin, Ibuprofin, or aspirin. Most were broken within 2-3 days and out of the hospital. Mine did not go so well as I have mentioned in other posts.
As a thought for the discussion between rebound and MOH, I like the combination of “medication recycling” which indicates one is on a cycle of 1 medication which keeps repeating the migraine because it is used over and over to break the migraine. Sometimes only 1 med will work for me, so I spend a lot of energy just holding the pain back which is exhausting until I feel I cannot hold out anymore from any head pain, and take something which stops the migraine. Then I start again. This takes much more out of me, and keeps me in bed and doing little, than having enough med choices so I can keep the pain under control.
I challenge any “average Joe” to tolerate horse inflicted daily bumps and migraines at the same time. I recently watched a segment of “Project Runway” (10th season, 2nd episode) and one of the designers had a fit because hot glue hit her hand and her thigh. This would not stop me longer that 5 seconds. I have been using a hot glue gun for at least 40 years and am inure to that pain, and was surprised she was making such a big deal out of it. If you want to sew, needles cannot frighten you. Same with any other field that requires tools that may injure a body part – not on purpose, but accidents happen. Migraines are not in that category, but there is a lot of pain I endure just to keep away from the “migraine recycle syndrome”. That is much much worse than having just a plain migraine. And what do you think of that name to replace MOH?
HANGINGBYATHREAD – I’m not sure “Migraine Recycle Syndrome” is entirely accurate, but it is certainly an interesting take on it.
There is so much involved that this *naming* situation is going to be tough. I absolutely think that since patients have the most to gain or lose by this that we let our thoughts and feelings be known!
I am new to the forum and this is the first time I posting. I believe I am suffering from “MOH” headaches, or “Rebound” headaches, and this has been confirmed by my doctor. But unfortunately, this was after being hospitalized, and suffering from chronic, horribly painful daily headaches for a month. Nothing helps them, I have tried, imitrex, Maxalt, Norco, Tramadol, Torodol, Tylenol, Motrin.. that’s when I was put in the hospital and given a “cocktail” of migraine meds. This included DHE, phenergan for nausea, steroids, dilaudid, and to be honest, I don’t remember what else. I went home after 4 days with no relief.
I have been a migraine sufferer for years, but went through a period of a few years where I just took Celexa, and that kept them at bay. I was able to just take tylenol or motrin when I had a bad one. Then I started needing OTC meds almost every day, and started taking Tramadol weekly, which I noticed made them worse sometimes, but I continued to take it for the temporary relief. I believe I am in the rebound cycle. Just wondering if anyone could shed some light on this, if anyone else has been through anything like this. I am on day 8 of taking nothing but my two preventatives, Topomax and Celexa. They have been some of the absolute roughest days of my life and the headaches are awful. I am just wondering when this pain and pressure will subside? Thanks for listening. -tiffany
Tiffany – first, let me tell you that I am so sorry you are experiencing this. Medication overuse headache is not really well understood, but it is thought that as many as 80% of chronic Migraineurs suffer terribly from MOH in addition to their Migraine. Why do Migraineurs get this awful thing more than other chronic pain patients? We really don’t understand yet.
It is not going to make you feel any better as you go thru the process of resetting (so to speak) your brain so it once again reacts ppropriately to medications again. The good news is that I have seen many patients go them the process with good results.
I know this is going to be one of the toughest challenges you will probably experience, but if it helps you, it is worth it IMHO. If it doesn’t help you, then you most likely don’t have MOH and figuring that out is very helpful in deciding which treatments to try.
One thing I would like to point out to you at this point is the possibility that you may have a comorbid condition that has yet to be diagnosed. Unfortunately this is often overlooked unless you are seeing really amazing doctors. Are you seeing a Migraine and headache specialist?
hate the term moh and would rather see rebound being used. I get them and then my neurologist puts me on a midral dose pack to break the cycle.
By Nancy Harris Bonk Moderator
Curious what your thoughts are on why you dislike moh? Many people with migraine also dislike it.
I tend to simply think of it as following my doctors orders. Maybe we should call it doctor overuse headache – doh?
Well a good doc shouldn’t get you into medication overuse headache 😉
Dr Whyte – Touche’! 🙂
After going thru a year and a half of chronic migraine and many types of treatments, it is very clear to me and my doc that I have MOH. This is after my neurologist put me on high-dose Ibuprofen for an extended period. I am confused from what I have read as to the best course to break free (I am on Ibuprofen-daily and triptans-averaging 2x a week). Some things I read say that nothing works, even things like Botox, unless you get past the MOH. Some things say you have to go cold turkey (which was hell for a week, never getting better) and that it takes a few weeks up to 3 months. Some things say you can take meds like ergotomine to help. My doc says to taper off the Ibuprofen over the course of a month. Is that the best approach? I could use other opinions. The cold turkey approach led to the worst week of my life. I’d like to avoid that if I could. Thanks everyone!
By Nancy Harris Bonk Moderator
Hi Desert Joe,
Moh can be very problematic – our migraines will be more difficult to treat and we’ll end up in a daily cycle of endless pain.
It’s always important to follow our doctors orders, but being informed on our choices is important too. I think this article has the best information on how to deal with moh I’ve seen; http://www.achenet.org/news/medication_overuse_headache/.
Let me know what you think,
THank you Nancy. I appreciate the link. I am going to trash this account now, though, because I am horrified that my email address is showing up in the forum instead of the name I selected.
I guess I’m coming onto this forum late but it seemed the best place to ask for some clarification.
How is it exactly that some people have been able to determined your migraines are MOH (or Rebound) versus mirgraines or others.
When I first was sent to my neuro, one of the key problems was that I was using Ibuprofen pretty much daily. Usually the prescribed dose. Some days, if bad enough I took Excedrin, and other days Aleve (Naprosin) though I avoided it because if it stopped before 12 hours I was screwed. If the pain was really bad I took combinations of the above (i.e. Iburpofen and Tyelnol or etc.. mixing different NSAIDS but never the same type). I should note that were days I was able to go without any meds at all. Usually I averaged pain killers 5 out of 7 days a week. On the 2 days off I would be just fine even without the OTCs.
So, of course, the first thing my neuro did was told me to stop taking all OTCs. Here’s the problem. Taking OTC NSAIDs I was Functioning. It wasn’t removing my pain, but I was able to function. Without the pain meds, I wasn’t even able to function. So when he took me off them, now I have nothing, no buffers between me and the pain. No decrease in the pain at all. Of course, he gave me Triptans and after the first 4 weeks I was allowed to take pains killers no more than 2-3 times a week If absolutely needed.
However this leaves me in a constant state of debate. Everytime I start getting a migraine I have to sit and think to myself. The earlier I take something, the less severe my post-drone symptomes & migraine pain will be further down the road. On the other hand, If it’s early in the week, what do I do if I use up all my allotment of meds for the week and then later in the week I’m hit with a whammy?
My husband even agrees that my headaches have worsened since seeking neurological treatment. I am NOT improving. So with taking no OTCs, I’m seeing NO improvement. I understand the risks of MOH or Rebound HAs, but at the same time, I NEED to function. I’m getting even more stress now from my doctor & my work for exceeded FMLA time. The worse is the fatigue & loss of cognative functions during pre & post drone symptoms. Nothing releives those symptoms.
Just wondering on the thoughts as to whether or not this whole MOH and Rebound term might just be frequently over-used? We wouldn’t be resulting to MOH or Rebouding if the medications were actually relieveing the symptoms and working. Obviously they are not…..
By The Migraine Girl Moderator
This is such a complicated issue. Have you had a follow-up appointment with your neurologist? I would recommend talking to him/her about what you’ve explained above (perhaps even printing out your comments and sharing them with the physician). It is definitely advisable to do whatever you can to avoid MOH–it’s possible that your body has yet to break the cycle that it was stuck in when you were taking NSAIDs daily.
I feel you for sure and hope you will talk to your doctor again. If he/she doesn’t seem receptive to your worries, it may be worth your time to look for a headache or migraine specialist whose expertise is in migraine disease. (Many neurologists are actually not experts in migraine disease.)
This article from Dr. Hutchinson might be helpful for you, and perhaps you can leave a comment for her after reading the article. We Migraine.com contributors can’t give any medical advice, but we can do our best to listen to you and help you seek the care you need. https://migraine.com/blog/making-decision-see-headache-specialist/
MOH is really complicated. It is of course possible that the term is overused, but in my experience talking to patients and doctors, it is a VERY common condition and one that’s hard to emerge from without a doctor’s care. Read more here: https://migraine.com/headache-types/rebound-headaches/
I wish I had more information to give you. In the meantime, consider talking to your neurologist about your myriad concerns and let us know how you’re doing.
“The Migraine Girl”