Has anyone suffered from a spinal headache before?

[MinnieTruck]

When having DD 3 years ago, an anaesthetist accidentally punctured my spine when attempting to do my epidural. As a result of that, I still suffer with spinal headaches despite having three blood patches to rectify the issue.

Because the first and second blood patches were unsuccessful, the lining of my brain (or something like that!) has been permanently damaged so I now suffer with these migraines every single day. I wonder if anyone has specifically had a spinal headache before as they’re different to standard migraines. Did any medication make a difference?

I’ve tried Amitriptyline and Nortriptyline (currently on 50mg of Nortriptyline but doesn’t make a difference) and I’m so sick of living like this. Life’s bad enough with two toddlers but this is going to push me over the edge. Help!!

I also had a dural puncture from epidural during labour. Then two failed blood patches. V bad headache for two weeks after that anytime I wasn’t laying flat whilst trying to recover from birth and look after new baby and toddler. Then over the third week the headache gradually eased. No further significant headaches (I get headaches like most people but wouldn’t link them to the dural puncture). Had a bruised feeling at epidural site for a couple of years or more after. Hopefully GP can help you and you can get the support you need.

A bit different I guess but I have a Dural Ecstasia the headaches can be something else. Only thing I've had success with was Maxalt Melts but I know they don't work for everyone. Hopefully you get so relief soon.

I'm so sorry for you OP, I had a dural puncture too, I refused to go back and have blood patches as I decided they'd done enough!

Couple of weeks of a headache when not lying flat and thankfully that was it, I'm so sorry you're still suffering, that must be miserable

The only thing I could think of was whether caffeine would help? I was advised to drink it when I had the headaches as apparently it helped. I'm sorry I can't offer more advice, I really hope they can sort you something

Yes from a lumbar puncture. Never had a blood patch done because the Drs in the hospital refused to believe me when I kept telling them I was in sheer agony with THE worst headache I had ever had in my life. Given oromorph once which helped and when I asked for it again I was refused all medication and accused of faking the pain for my drug addiction. I most certainly aren't a drug addict. Severe headaches lasted for around 8 weeks and then migraines pretty much daily for 2 years. I also started with vertigo as well. Referred to a neurologist and diagnosed with hemiplegic migraines. The reason I went to hospital in the first place. Tried amitriptiline. Fine until the dose increase then I started having bad palpitations. Tried pretty much everything but nothing was suitable for me. I can have Botox to see if that helps but since 2018 my migraines have become a lot less severe and no longer last days and days

Yes caffeine helped me albeit very temporarily

I had dural puncture. The country where I gave birth in doesn't offer blood patch, was advised to lay on back for 48 hours, which I couldnt do whilst looking after 2 tiny children. So I developed the worst headache known to man. And when that subsided, I had back to back optical migraines. A brain scan showed nothing worrying. And now I get a few optical migraines a month. I did already suffer with them pre birth but not to this level.

Ask the dr for beta blockers. They may well help.

Gosh sorry to hear you’ve been through similar, it’s hell. Glad to hear you haven’t suffered with anything long term though! I’ll try my new dosage of meds but if that doesn’t help (I don’t think it will) I’ll defo have to go back to the Neurologist and see what we can do

I’ve never heard of the melts but thank you, I’m gonna do some research on them. Can they be prescribed by the NHS or do you get them privately?

Thank you for your comment. Caffeine definitely made a difference in the early days but it does fuck all now, it’s so stressful as literally nothing helps!

Wow so sorry to hear of your experience, that sounds like hell on Earth. Did anything happen in 2018 for your migraines to not be as severe? I also get heart palpitations with Nortriptyline, sometimes I think I’m having a heart attack it can be that extreme

I’m going to look into this, thank you

I had the same for a couple of weeks after my c section- absolutely awful so I really sympathise. Caffeine helped and taking it easy- lying down as much as possible. I took pain relief but I’m not sure it did much (codeine, dihydrocodeine, paracetamol and ibuprofen). Really hope you find a solution.

NHS.

@MinnieTruck I left my abusive marriage, and although my migraines were caused by two separate head injuries many years apart. I think a lot of the migraines circa 2016-2018 were also caused by stress. Although it probably took around 6 months after for them to start easing off.

I'm sure will not help at all, but have you tried Coke? Really icy cold too.

Also, cold and flu pills.

That's what works for me.

Yes I had this following birth but no one told me it was this until a few months later. It took a few weeks to ease and affected my ability to care and bond with my child.

Great to know, thank you

Ahh that makes sense. I’ve been getting the migraines more intensely in the past 2/3 months and my stress levels have definitely gone up in that time!

@coxesorangepippin that only worked for me in the early days. I think I’m too far gone now for any of the suggestions to make a difference😢

@decionsdecisions62 sorry to hear that, I also struggled to bond with DD as I couldn’t even hold her (I spent most days lying flat or in and out of the hospital), it’s awful really

No advice but masses and masses of sympathy. Has your local pain clinic been any help?

Are you able to pay to see a 'top' consultant ( Top Doctors website for eg ). There must be a consultant who is the countries leading expert in this area.

You can look up who's done studies into it and see who's been involved. Just as an example Professor Sir Doug Turnbull FMedSci FRS - this guys helped write an article for the British Journal for Anesthesia Post‐dural puncture headache: pathogenesis, prevention and treatment. He's not a consultant so this is just an example but there will be someone who's a top expert in it.

If you tell us what region you are in then maybe someone can help.

have your neurologist and anaesthetist spoken to each other? The incidence of chronic headache after a dural puncture is only relatively recently realised to be higher than previously thought, is not well understood and is difficult to manage. A lot would depend on whether they think you have a chronic csf leak or whether it’s more of a migrainous headache. Imaging may help to differentiate between the two if you’ve not already had some funky scans. A chronic pain consultant (anaesthetist with a specialist interest in pain) may be able to help if the neurologist doesn’t think there’s a ‘medical’ problem contributing to the headache. HTH.

I’m too poor for this unfortunately but thank you!😆

The incident happened in 2021 and I don’t think the anaesthetist ever spoke with the neurologist. It was said that I had a csf leak and it was confirmed with some scans I did a few years ago