Head pain help!!

Will try and keep this short as I know it will be boring! Two years ago I started suffering headaches on the top of my head like a burning pressure. MRI normal, CT normal and MRI neck showed small disc bulge at C5-C6 not causing this pain apparently.

Tried amitriptyline with no help and eventually saw headache clinic who started Gabapentin for suspected allodynia. Started at 300mg and worked up to 1800mg with no help over last few weeks.

Actually now have intense sick headaches so have had to reduce dose back down to 900mg. I just don't know where to go from here! Not only has the pain not gone but it's got worse and is now making working difficult as I just want to sleep all day which also doesn't help!

Any advice from anyone who has experienced allodynia on the head? It's a burning patch to the left of the crown which moves. Or anyone with experience of Gabapentin use and it causing daily sick headaches? I'm going mad!!!

Thanks!

16 Replies

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  • Have you ever had your B12 and folate levels tested.

    The fact that your condition got worse with gabapentin - which is known to affect B12 absorption - might indicate that an underlying deficiency is contributing to the problem. Neuropathy (and from my experience and altered sense of pain etc) are also outcomes of a B12 defiency.

    You can find a list of the many and varied symptoms of a B12 deficiency here.

    pernicious-anaemia-society....

    just in case other things ring true.

    Doctors can be very confused about what B12 deficiency is and may rule it out completely if anaemia isn't present but anaemia isn't necessarily among the first symptoms to appear.

    Diagnosis can also be difficult as there isn't a good test and really at the end of the day the only way to diagnose it is from clinical symptoms - but most GPs etc aren't aware of this - so another problem.

    If you think it is likely then would recommend joining the PAS forum on health unlocked as a place to get support whilst looking for a diagnosis.

  • Hi.

    I have cluster headaches ( very intense!). Ask your GP about SUMATRIPTEN nasal spray.

    It doesn't cure it---there is no cure.

    But it reacts quicker, because it goes straight to the brain ( and pain!). Takes about 15 minutes to work, during which I use a cold wet cloth under a constant tap (fawcett?).

    Hope this helps.

    Kevin (UK).

    coylekevin103@gmail.com

  • Thank you both for your reply. No I haven't had b12 checked but will do so thanks for that. I am often tired and depressed and also get palpitations which are a symptom.

    Saw gp today who didn't seem bothered really but gave me Naproxen which hasn't done much!

    My headache is constant and has moved from forehead to top to back.. Burning intense pain. Just don't know if this is due to the Gabapentin being reduced but when it was high it caused the headaches in the beggining?!

    Any advise from anyone again re Gabapentin would be good!

    Had a magnesium bath last night and trying cold flannel too.

    Thank you

  • Whatever the Headache Clinic has you on isn't working. Tell them to take you off of it. My headache clinic had me take some steroids, didn't work

    I don't think they have all of the answers, so I stopped going to them. I go to my GP now, on sumatriptin and 3/asprins. Good luck to you.

  • Thanks for your reply! I've been to headache clinic twice and that was after pushing for two years as my gp didn't know what to do! Headache clinic consultant isn't in until 19th so can't see him until then anyway and it was the secretary who said go down to the dose I can manage.

    Can't seem to manage any dose as just opened my eyes and already have a headache! This isn't fair and I'm scared its more... But with an MRI and CT a year ago, what's the chances of something awful growing?!

  • I am not being funny but unless she is medical trained she should not be messing with medication and changing your doses

  • The secretary told me to go back down to the dose I could handle. My GP then said to wean off gently. Went to Neurologist yesterday and he said to stop completely! I don't believe this is sensible even if he is a neurologist as everywhere online says don't!

    Although I believe they're toxic to me, I am weaning off daily and then starting Nortriptyline 10mg at night... wish me luck!!!

  • Hi, don't suffer from your particular problem but i do suffer from severe migraine. I was taking gabapentin for nerve pain in my arm following surgery for malignant melanoma. I was taking 2700mg twice a day and it did nothing, in fact i asked the doc if my arm could be taken off as the pain was so bad. He immediately changed me to pregabalin, it's the same family as gabapentin so didn't need to wait, could change same day. The pain reduced immediately. I don't know if this will help but it might be worth asking about. I also daily take pizotifen , the max dose is 1.5mg, i don't know if that's helpful as i think we have different migraines. If you do take this it will make you a bit sleepy at first but it soon wears off, take it at night so that most of the side effects happen then.

    Hope some of that is helpful.

  • Thanks for your reply! I have read that pregabalin has less side effects for maybe I should try that but tbh I don't want to be on anything now as its scared me!

    My headache is still here.. Pounding left sided throbbing I didn't have before I took these. Am weaning myself off them 100mg every few days bloody horrible things!

    Thanks again!

  • I have been taking Gabapentin 1,800mg. a day for a very long time with no problems (apart from mild drowsiness). 'allodynia' sounds like doctors don't know what your problem is, but I'm very sceptical. get a 2nd. opinion.

  • If you don't mind me asking does it feel like you're eyes are swelling up and burning to and that your head is being pushed down into your neck and can only you feel the burning feeling?

  • No I don't get that feeling i'm afraid. I literally have a burning at the back of my head. I have an additional issue of sinus problems too which can make me feel like there's pressure in my head and my ear pops. When I bend over my eyes feel like they could pop out!

  • When you had your CT scan did they use dye as well and if you don't mind me asking it's not very nice to go through but I have had it but I wonder 😐 if you ask for an X-Ray lumber puncher to check the fluid level that is going up to your brain oh and can only you feel the burning

  • No they didn't use dye when I had the CT but I also had an MRI so I think they have been quite thorough. I haven't had a lumbar puncture but no one has ever suggested it really! My Headache Clinic Specialist seems adamant it's nerve and neurological related.

    What are your symptoms?

    Only I can feel the burning yes. He said it's allodynia but it isn't really sore to brush my hair but it can sometimes feel like my hair has been up for too long when it's down!!

  • I have IIH and chronic migraines and they found out because I have burning only I can feel and I felt like my eyes had swollen up ready to pop out pain at the top of my head that would not go away like it was being pushed down into my neck and the pain was so bad started blacking out they found out after CT and MRI scans which was done in A&E and they kept me in the same day I walked in for a week came back normal because they said it IIH which is rare that's when they did the lumber puncher

  • Wow you really do suffer you poor thing! I don't think my symptoms sound like yours maybe similar though. I did look up IIH and don't think I have that!

    Hope you're getting some relief.

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