I was diagnosed in 2011 with CA unknown but for the last year I always seem to have a headache, my gp has ruled out lots of things over the year. On Monday my gp sent me to hospital as the pain was so severe and each time I stood up I felt like I was going to faint. I have to have a lumbar puncture on Wednesday as they believe there is extra pressure coming from somewhere, has anyone else had this problem or is it just me? They did say that is can happen to anyone who has any damage to their brain or not developed as in my case. Really confused 🤔

7 Replies

  • Hi Wendygirl, I have constant headaches but yours sound more severe. My headaches can be caused by the Baclofen tabs I take for my eyes, they help me focus. I've had a lumbar puncture and it revealed a splenic aneurysm which I didn't, know about. Blood pressure also causes headaches so have yours checked. I don't see my neurologist till next month but I will mention the headaches, let me know how you get on.


  • Hi. Wendygirl

    We all (or many of us) seem to have head problems of one sort and another and a friend suggested that green tinted glasses help-------and yes they do but obviously you can't wear them all the time. I bought a cheap pair to try them out and they really helped. ( Amazon have cheap and expensive ones). Everything is worth a try

    Good luck. Ted

  • Hi🙂 It's bad enough knowing you'll have that sensation when you stand up, without having severe headaches as well😑 I'm glad your GP is referring you for tests, hopefully you'll get some relief soon🙂

    I complained of a similar sensation and had 24hr blood pressure monitoring, nothing significant was noted. I would expect to know more from a lumber puncture test, although this wasn't done in my case. 🙂xB

  • Hi ataxia has links to migraines and may be the cause. I suffer with headaches...mostly due to eye strain as the ataxia has affected my eyesight. New glasses helped (not with my sight but reduced the frequency of my headaches) but can still get migraine that lasts for a few days. Hope you get it under control. X

  • the lumbar puncture will really help diagnosis. I was diagnosed with ataxia 3 years ago , then saw a neuro bod who felt that my symptoms did not really explain ataxia . The Lumbar puncture was done last April- I was very nervous but it was fine. I could not walk at all before it but afterwards I could walk so in December I had a shunt put in and now I am walking back to happiness as the song says. From the LP they diagnosed normal pressure hydrocephalus so had a valve put in my brain and am so much better so have the LP- it could really help the doctors to say what is wrong.xx all the best Sylvia

  • Hello, I had bad headaches for a number of years, had the spinal, which turned out OK. After about 20 years of severe headaches, maybe once or twice a week, some lasting three days, and little relief from headache pain medicines, the neurologist put me on Divalproex. That seemed to solve my problem with headaches. I very seldom have headaches now, but when I do they are usually mild, and I can control them with Excedrin Migraine. I've had cerebellar ataxia for a number of years. It is slowly getting progressively worse-symptomology.

  • Plopony🐴

    Hi! Wendygirl,

    I was diagnosed with chronic Lyme's in 2007 which caused severe headaches. My Lyme's Dr. put me on Topiramate and propranolol daily. When I get a headache, I take rizatriptan benson. If that doesn't work I take Relpax. I was diagnosed with ataxia by a neurologist in 2011. When I went into remission from Lyme's in 2015. The doctors thought the ataxia would get better instead the opposite happened. In 2016 my neurologist sent me to a neurologist who specializes in genetics. He diagnosed me with hereditary Spinocerebellar ataxia. He kept me on the same medications.😊

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