• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Medication overuse headache syndrome anyone?

heapsreal

iherb 10% discount code OPA989,
Messages
10,112
Location
australia (brisbane)
Drs suggested to cut back and every so often have a day medication free. MOHS i guess he was hinting at. Not fully convinced yet. My pain killer use has increased since post shingles pain has increased over last 12 months.

Very little ibuprofen or paracetamol as i dont find them helpful. I am on tramadol 50mg every morning for lower back arthritis. Lyrica at night as a preventer and for RLS and on occassions take extra for headaches. My dr prescribed palexia for headaches which by the end of most days my head is throbbing. Palexia 4 days per week.

I stopped tramadol 4 days ago and palexia none today but took some asprin/lyrica. Headaches start of mild and increase to moderate. Today throughout the day id have mod to severe headaches for 30min than ease abit back and forth. This afternoon when i got home my headache was mild which is an improvement.

One preventative treatment i started 5 days ago that scares me abit was low dose effexor 37.5mg. By second day to my suprise my lower back pain was ok without tramadol and continuess to do so. Not doing much for headaches but early days. TCA antidepressants did little.

Interested to hear other peoples experiences on it.
Cheers
 

BrightCandle

Senior Member
Messages
1,158
Doctors are idiots. At the very beginning of my disease I was having occasional headaches and using paracetamol and as it got worse I was using more and more until it become most days. Got told it was overuse and had to stop for 2 weeks and at the end of those two weeks my headache was a 9/10 and I was partially blind, for 6 months. Did they help me? No they did not, not at all.

Could you have overuse headaches? Yep you could it does appear to be a real thing, get off the drugs and endure for a week and see if it dissipates but if just gets worse change doctor and don't look back because that one is a bad un.
 
Last edited:

heapsreal

iherb 10% discount code OPA989,
Messages
10,112
Location
australia (brisbane)
Doctors are idiots. At the very beginning of my disease I was having occasional headaches and using paracetamol and as it got worse I was using more and more until it become most days. Got told it was overuse and had to stop for 2 weeks and at the end of those two weeks my headache was a 9/10 and I was partially blind, for 6 months. Did they help me? No they did not, not at all.

Could you have overuse headaches? Yep you could it does appear to be a real thing, get off the drugs and endure for a week and see if it dissipates but if just gets worse change doctor and don't look back because that one is a bad un.
It seems to be an easy out for drs to say its overuse. I will keep trying for a few more days reduced meds
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,112
Location
australia (brisbane)
Doctors are idiots. At the very beginning of my disease I was having occasional headaches and using paracetamol and as it got worse I was using more and more until it become most days. Got told it was overuse and had to stop for 2 weeks and at the end of those two weeks my headache was a 9/10 and I was partially blind, for 6 months. Did they help me? No they did not, not at all.

Could you have overuse headaches? Yep you could it does appear to be a real thing, get off the drugs and endure for a week and see if it dissipates but if just gets worse change doctor and don't look back because that one is a bad un.

Saw a study done by the Dutch on migraine and every day headache sufferers. Suppose to go 2 months med free. There was a percentage thatcouldnt last that long but those that lasted 2 months 47%improved about the same didnt and 6% got worse.

My dr is ok, he said just try a day here and there and see how i go. The neurologist i saw who was a cow pushed this and migraine diagnosis before i even said anything, that saw a few months back. Im just feeling it out as an option as things werent getting better.

The 'migraine' thing is confusing as many information sites say hit it hard and quick and use combos of things. The med overuse thing doesnt come up unless one specifically searchers for it. Supposedly simple analgesics do this also and i know of many people who take them very regularly but never heard of anyone with this issue.

I guess theres a big push world wide it seems to reduce many types of pain relief. This med overuse thing looks to help them push this. Not helpful if one is in bad pain and doesnt have overuse issues. Another reason to hate dealing with the health system.
 

BrightCandle

Senior Member
Messages
1,158
All the war on oppoids has done is make a lot of people suffer with severe pain and struggle to cope with day to day life. It hasn't done anything useful for reducing addiction or the impact of these drugs, its just introduced a lot of human suffering. Chronic pain doesn't go away on its own, it can't be yogaed or meditated away nor can it just be distracted from, it can however be managed with appropriate treatment.

The studies showing that pain meds don't work on chronic pain come the same damn place with the same "quality" as those advocating GET for ME patients. You don't have to spend long with chronic pain sufferers to learn that these studies results don't work.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,112
Location
australia (brisbane)
Update. I stopped tramadol, which i use for back pain, for a week. Im sure it was tramadol withdrawal as whole head felt weird, similar to stopping antidepressants. I was still getting intermittent headaches.

So after a week off tramadol and less use of palexia, i woke up and the weird withdrawal symptoms gone and general headaches. But im still getting left side neuralgia/phn/shingles pain localized to left side of head is still present.

Low dose effexor still helping lower back pain, so thats a win and dont need tramadol i guess unless my back flaresup. I cant say its helped the shingles headaches much, maybe too early but willing to try one more dose escalation of effexor from 37.5 to 75mg. I have a few more weeks until i see my dr, so will plod along and see what happens until then. The other options i last spoke with my dr was changing my preventer lyrica and try Gabapentin or topamax???

If i had medication overuse headaches, possibly🤔 but the initial reason for pain relief was the shingles headaches and its still present.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,112
Location
australia (brisbane)
I'm reviving this thread after a couple of over night stays in hospital in mid January for severe migraine type headaches. Basically severe headaches and constant vomiting for several days, almost a week.

I was in hospital one night and sent home. The treatment they gave me worked. The next night I was back in hospital and the infusion they gave me the first time did nothing this time. All I heard from drs was its probably opiate medication overuse syndrome.

Usually I take 50mg tramadol every morning or I'm bent over like a half open pocket knife all day but I haven't used much at all as I have been off work for 9 months now with a knee issue. Work flares my lower back pain up. So tramadol use has been minimal.

My days usually start with a mild headache or brain fog and slowly increase from there to a moderate to severe headache. Migraine/vomiting type headaches aren't that common but I do get them. I have been taking one endone at the end of the day when headaches get worse. I actually asked my dr what he considered too much. He said 1 box of 20 every month using them as I do was fine.

Sometimes my headaches are what I call generalised headaches and other times they are what I call shingles headaches as they are left side of head where I had shingles or having a shingles outbreaks.

My headaches have been getting worse, more frequent etc. I was/am on lyrica as a preventer. My dr wanted me on zoloft but I can only tolerate 25mg, which he said I need to get to 50mg. The week I went into hospital I had increased the zoloft to 50mg the previous week. Because lyrica also puts wt on people easily I suggested to my dr to change over to Toprimate as its more wt neutral. It actually helped me lose wt quite well. So I was in the middle of tapering off lyrica, down to 75mg a day from 150mg twice a day over a couple months. I was on 100mg Toprimate and just upped the zoloft.

So when I was in the middle of these medication changes was when I had this severe headache issue. I think the medication adjustments played a big role. But I kept hearing them go on about medication overuse headaches etc.

I rolled around this dam hospital bed in pain and vomiting for about 4 days. All they did was drugs to stop vomiting which didn't help as it was my head pain causing the vomits and wanting to give me paracetamol and brufen. I felt so shithouse that I couldn't argue with them if I tried. There was little clarity of thought other than my head hurts, where's the vomit bag.

They had me down for an mri but that was really to cover their arse but I eventually got it done after 4 days. No concrete answers other than I could have increased intracranial pressure as it looks like my pituitary gland is pushed up against a Boney part in the skull, could be. Then said I need to see a neurologist, which I have to find myself. About July is when I get to see one.

The advice from the hospital General physician was to not take opiates for the pain but could take 8 paracetamol for the rest of my life if I needed too. Best to take 2 when I first wake up as they work better before the pain starts. Also brufen 3 times a day for 3 days every so often.

After 4 nights in hospital of not eating and just vomiting dry retching, I came home and did the same for another week. I lost 10kg in that time. My guts was torn to shreds. I look back now I can think straight and just think they were cruel bastards. I should have had IV fluids all the time and some sort of antacid regularly. When I got home that's what I did, mylanta and somac daily to settle my stomach. I was eating a table spoon of jelly and a tablespoon of ice cream twice a day, I couldn't handle anymore for well over a week.

I was off any narcotic for well over a week and my head felt shit. I'm normally fine to drive anywhere etc but had an ortho appointment for my knee but I was in no state to drive and had my son drove me. I would have driven like I was over the drunk driving limit. That stay in hospital did a number on my guts and my head.

Pisses me off as this medication overuse headache thing seems like a trend for drs to turn it around on the patient. I still don't really know what is going on. I'm still getting daily headaches. Every 3 or 4 days I take a stronger pain killer and function really well. I don't get a rebound from it. But I'm trying to go a fortnight with nothing and then I see my gp, which I will tell this is all bullshit.

I'm suppose to be doing rehab exercises for my knee but feel to shitty from the constant headaches.

I actually got told in hospital acute pain there's damage done to tissue. Chronic pain it's a software issue and no actual tissue damage. I was too out of it to argue but picture some poor old bugger with chronic hip pain being grinded away to dust but its chronic so it's not tissue damage, WTF. Then she mentioned chronic pain is treated by CBT, then I knew it was all BS coming from her.

The whole opioid epidemic along with Drs don't have answers to everything, is working against people who actually need treatment. Everyone is treated as a druggy or potential druggy and if you have a condition they can't treat its probably your own fault and cbt will fix it.

I've been wanting to write this for a month, because it really pissed me off. They don't know what's going on so make shit up. I'd really like to see these bustards in chronic pain and positive think their way out of it. That's right, don't drink caffeine. My wife walks out to get a drink, both drs that just saw me are buying coffees, hippocrites. WTF I hate drs.
Enough of my whinge.
 

BrightCandle

Senior Member
Messages
1,158
They pulled the same stunt on me when my migraines were 10/10. Pulled me off the pain meds as "medication overuse" and when a week later I was still unable to function they wouldn't even admit that it was obviously not medication overuse but instead they just left me in pain for a week. They also didn't renew the pain meds, nope they put me on an SSRI which did nothing for the headaches but it sure did shut up my complaining as it turned me into an emotional Zombie for 6 months. Still have migraines every day, 6 years and counting and they haven't even tried to help.

The entire healthcare system is a complte disgrace and I would fire almost all of them. But I think enough people are waking up to this reality of how bad its gotten, how much they are refusing to use their tools to help people with things like Long Covid that people are going to be demanding change in ever increasing numbers.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,112
Location
australia (brisbane)
They pulled the same stunt on me when my migraines were 10/10. Pulled me off the pain meds as "medication overuse" and when a week later I was still unable to function they wouldn't even admit that it was obviously not medication overuse but instead they just left me in pain for a week. They also didn't renew the pain meds, nope they put me on an SSRI which did nothing for the headaches but it sure did shut up my complaining as it turned me into an emotional Zombie for 6 months. Still have migraines every day, 6 years and counting and they haven't even tried to help.

The entire healthcare system is a complte disgrace and I would fire almost all of them. But I think enough people are waking up to this reality of how bad its gotten, how much they are refusing to use their tools to help people with things like Long Covid that people are going to be demanding change in ever increasing numbers.

Reading people's experiences about medication overuse headaches, the very large percentage have stopped pain meds for headaches and not improved or got worse. Not many have I read where they say it was overuse.

Unless they can find the issue and fix it, all we have is symptom management that can Improve our quality of life and function.