Im not looking for medical advice. I have spoken with a general doctor but it’s a very long process to get in to see a neuro so I thought I’d ask if anyone here has ever had headaches go away to a degree after embolisation then return with a vengeance?
I used to take painkillers all day everyday then was embolised and the headaches were an ebb and flow but overall over time they were better but the last 2 weeks they are back and I’m on painkillers all day to keep it bearable (paracetamol that is)
It’s not long since I had a follow up digital angiograph and all was fine so I’m sure it hasn’t reformed in a matter of months so I guess my question is have others had terrible headaches go away but return many months later after successful obliteration of an avm?
Thankfully I don’t get severe aches anywhere on my head - but, they roll around(that’s the best way I can describe it) - it’ll b a pressure behind my right eye, then a throb on left/right side & so on
I try my best to avoid any type of pain killer - since I know where that may lead. But, some days I can’t avoid a acetaminophen or 3
Actually yes. Dural AV fistula here with x4 embolizations end of April this year. 2 weeks after the procedures headaches completely went away for about a week, week and a half. I was so freaking happy as I’ve had them for at least 20 years. Then they slowly came back - though differently. They are not the same headache in the same places. Sigh. My neurosurgeon says they could still change as my vasculature heals more. Here’s hoping as I’m not feeling so good about it now. Having to take meds every day.
I just noticed that acetaminophen (which I’ve never heard of) is what I take but it’s called paracetamol here and that’s all I take for pain (even though it has little effect because it’s so mild)
I’d rather take ibuprofen/nurofen as it works well but it’s preferred I didn’t
Hey AlwaysCurious,
Firstly I didn’t have an embolisation. I had a craniotomy and a shunt insertion. I had what I now call a bit of a ‘honeymoon period’ post surgery. I was having headaches but mild in comparison and to be honest thought I had this all beat. Well, didn’t I get an education 2 weeks later. When the headaches hit, they hit HARD. These weren’t headaches, that’s too simple a word, everybody gets headaches. Ohh no, these were bolts of agony sent from the gates of hell. I’d never had pain like it, just WOW intense. I did not believe pain like that existed.
To manage the pain I now use Panadiene Forte (Paracetamol and Codiene). I’ve been using these for many years now and a few weeks back my Dr tried getting on my case regarding the codiene/opiate. I explained to him if he has another option then let’s trial it, but I know he has no other option. I’ve trialled all sort of meds, but, for me, they do not benefit. The Forte works, he cannot take what works and leave me in agony. I must admit, the conversation was a little heated at times, but he did finally agree.
Mike, if I take those tablets at more than 6/day I too have GI issues. I have to monitor that carefully.
Hey Mike
I’m the opposite, my head gives me LOTS more issues than my GI. I’m presently in the process of trying to figure out what’s going on. I say ‘presently’ but I informed the medicos years ago, but haven’t got any definitive answers, yet. Head dr says ‘Nothing to do with us…Must be your GI’. GI dr says It’s just proctalgia (or a pain in the a… I told them ‘The wife might agree with that, but somethings not right…’). So I ignored it and ignored it and now it’s got to the point I gotta do something. I have a scan arranged for next week (Covid dependant)
I would not be at all surprised if they come back and blame my use of painkillers being the cause of the GI issues, in fact I’d be surprised if they didn’t make comment. I am well aware of the issues and the consequences and I do listen to what they say, but when my head starts banging everything else pales in significance and as I say “I have to monitor that carefully.” Head vs GI. In my opinion it really can be a fine balancing act. As ‘AlwaysCurious’ speaks of, I still have that ‘Ebb and Flow’ headache, so I’m forever on a seesaw of symptom/medication side effect and management has become paramount.
I basically take 8 paracetamol per day and it barely manages the pain but I don’t want to go back to ibuprofen and I don’t have the opioid receptor in brain (well it doesn’t work). I’d prefer not to take opioids anyway so that doesn’t bother me that I can’t
Although any surgery I’ve ever had, the doctors/nurses have as always felt bad for me when they see my painkillers are paracetamol lol
I was just seeing if others had the same issue as I do with headaches returning
I don’t get severe aches anywhere on my head - but, they roll around(that’s the best way I can describe it) - it’ll b a pressure behind my right eye, then a throb on left/right side & so on