Assumption? Medication Overuse Headache

Hi – I would really love some advice. I saw a neurologist over two weeks ago and he’s diagnosed me with Primary Stabbing Headaches (PSH) and he is linking that to Medication Overuse Headache (MOH) or, as he called it at the appointment, Opioid Induced Hyperalgesia (OIH).

I’ve now been summoned to see my GP to discuss the results of my neurology appointment. I have had migraines although not very often, probably every other year if I had to put times on it. In fact, I rarely got headaches at all, the odd tension headache when stressed, and I get a headache when my stomach is badly upset. However, last year I had a bad headache for 3 weeks and then a gap for 2 weeks followed by another bad headache that lasted for 5 days. Since then I have them very randomly but very frequently. I get a sharp stabbing pain at specific points of my head and it can last a few seconds up to 15 minutes. Although last Tuesday I had one last the rest of the day from about 1pm. I am worried about the assumption that these are worsened by MOH. Surely if it was a MOH or OIH there wouldn’t be days or a week where I don’t get the headaches at all and days where I may spend the afternoon trapped in bed feeling like someone is drilling through my skull and yet I’m still taking the same medication most days. I’ve never taken the painkillers I am on for headaches. I take co-codamol 30/500. I take it primarily for severe back pain, osteoarthritis in various other bits of me, fibromyalgia and a few other pains and problems. The painkillers mostly just take the pain from unbearable to bearable although it can sometimes make little difference. I do take the painkillers regularly but sometimes I am able to skip a dose or two on good days. When I can skip doses this doesn’t cause me any extra pain or problems either, no worsening of these or any headaches and no improvement either. I have read that OIH should improve on reduced medication, excepting withdrawal symptoms. I’ve read a lot about MOH/OIH and the symptoms that are suggested are nothing like PSH anyway. The following paragraph is from a paper by Canadian Anaesthesiologists re differential diagnoses:

** IOH is characterized by a paradoxical increase in pain associated with allodynia and hyperalgesia. Pain may occur at a different location and can be widespread. It is usually poorly defined in terms of region and quality. Response to opioid treatment - the pain worsens**

This above doesn’t exactly describe Primary Stabbing Headaches which are very clearly defined in region and quality. Plus, once or twice I have accidentally (genuinely accidentally) taken a dose twice despite writing it down and using timers so I don’t take a dose too soon) and felt quite a LOT better… which is a shame as that’s not exactly a safe way forward!

I found the whole appointment difficult as the neurologist just wanted to make my symptoms fit the boxes he had to complete on his forms and they didn’t really. I am also on anti-depressants (along with a vast number of people in pain) and this doctor threw out suggestions as though I could easily come off the anti-depressants if only I had CBT and/or practiced Mindfulness. I have been assessed for CBT and wasn’t deemed ‘right’ for it as I don’t have the negative thoughts or behaviour that CBT aims to change. I did get talking therapy some time ago which helped deal with a specific incident with a family member that was upsetting me considerably. I do practice Mindfulness though I have never really felt the need. I’m not stressed or overwhelmed and I genuinely find a good book, a walk with my dogs (well, a stagger is more like it really) or even just listening to my dogs breathing when they sleep – these are all things I find peaceful and soothing should I need to calm my head. The doctor assumed that being depressed must mean I’m thinking or reacting wrongly instead of how one doctor explained it to me that ‘being in pain mucks up the balance of chemicals in the brain and I don’t get enough Serotonin. Was this doctor wrong? I have tried to come off anti-depressants several times despite one GP being surprised I wanted to try but it doesn’t tend to go well as the depression just creeps back. The neurologist has said that I can’t have the treatment for the PSH unless I come off Venlafaxine – which as a SNRI is meant to be very difficult.

I don’t know how to handle the appointment with the GP – won’t they be more likely to just go with the neurologist’s view? I don’t like being on a lot of pain relief but I hate being in pain an awful lot more! I don’t like taking the anti-depressants either!! Though I seriously don’t want to end up back in the state I was when I wasn’t on them!!

If anyone has any advice I really would be most grateful. Thanks.

Sorry for the epic post!

[Cally01]

Hi 😁

Oh my goodness what a situation your in, so sorry.

I've said before that I'm sure neurology just use medication overuse as an excuse to buy time to see what box you fit in. It's a joke.

Now, when i was getting sporadic sharp pains randomly over my head neurology advised 75mg of asprin every morning, that helped with the piercing short lived pain 👍.

I love that the specialists tell you your using too many painkillers 😂 where do they think we get these tablets?

Have you tried CBD oil? It helps fibro too 👍.

Write down what you want to discuss with your GP, be prepared that the gp may want to reduce your strength and remove some of them because neurology will be placing the blame with the gp for med overuse!! Fnd out exactly what withdrawal you can expect and what you can do to make it easier for you.

Your gp might want you to see a pain mgmnt team !!

Good luck i hope you get on ok 👍

[Hidden in reply to Cally01]

Thank you so much, this really helps. The neurologist didn't even try to establish if there was any pattern around my pill taking, just blithely assumed and currently opioids are taking a bit of a beating in the media - rightly or wrongly.

I haven't heard of CBD oil but a quick look on the internet and I'm now definitely interested in trying this. Sadly I can't take Aspirin as it makes me throw up

You are so right about 'where do they think we get these tablets'! Sigh. I shall write out my questions/concerns and my husband has now said he'll come with me. You are right to suggest I be prepared for a reduction in meds. Other countries suggest trying an increase first and if the pain decreases then they can rule out MOH. It shouldn't be assumed so blithely.

I won't mind seeing a pain management team although I know people who haven't found them to be that much help really. Shame.

Oh well, thanks again.

X

[sjwhitfield in reply to Hidden]

I'm assuming your go has sent you for an mri to check there's nothing going on? Triptans are used for migraine and really help, ask your gp for those, I'm surprised the neurologist didn't give you them, ask for a second opinion and see if our go will refer you to the migraine clinic at Charing Cross hospital London.

[Cally01 in reply to Hidden]

Your welcome 😁 preperation is definitely key 👍. X

[sjwhitfield]

Your gp!

[Cat00]

Hello

My headache specialist says that headache prone people just can't take opioids/triptans/painkillers like other people can. Because obviously there are a lot of people on daily painkillers for arthritis etc. Unfortunately if you are genetically prone to headaches or migraines you don't have the same amount of treatment choice other people have. I'm allowed 6 painkiller days a month, I'm in pain everyday thats just the reality of my genetics.

[sophiedora]

oh dear, sorry it sounds like a tough appointment. Codeine is a particularly bad drug for causing MOH, and that causes headaches that act similar to migraines & other headache types. Because they are so similar, it has to be ruled out first to diagnose one of the other types. Your gp might change your painrelief from codeine to something else.

most neurologists will rule out MOH before giving other treatment. I had to off all painkillers for a month before starting a treatment regime (awful but worth it in long run).

perhaps keep a diary detailing which days you take painkillers (whether headache tablets or codsine for your other conditions). If you are taking pain medication everyday, you could definitely have an element of MOH

[sophiedora]

talk your concerns through with your gp & hopefully they can help. Good luck!

[Hidden]

Thanks for all the advice. I have the MRI due at the end of the month. I was given Triptans by GP but they didn't help - don't work on primary stabbing headaches maybe or perhaps don't work on me! The neurologist wants me to have Indometacin as he said that is best for PSHs but I can't while on Venlafaxine as both are bad for stomachs. I have a hiatus hernia and gastric reflux disease already so see his point of view. Along with all the other pain causing problems I am feeling rather trapped about it all today, particularly as headaches have never been that much of an issue before.

I shall prepare for the GP as suggested - fortunately hubby is coming to support me so I'll try and put it out of my head for now. I'll be giving myself tension headaches at this rate!!

Thanks again.