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!