Cronic pressure headache from back of head to front for 4 years

Hello, my name is Jill I have been suffering everyday from the time I wake up to when I go to bed and that's if I sleep because of my pain. I have been to 2 neurologist and I have had a mri of head mri came back clean nothing wrong with my brain thank god. Noone seems to give me an answer on why I all of a sudden in 2012 started having headaches. I am definitely not the same person. I used to be. I need help I need someone who can give me answers due to I'm lost and don't know what to do anymore. I've tried every headache medication they have prescribed me I've done acupuncture chiropractor and medical message therapy as well as botox injections and I even had occipital nerve block done and I still suffer everyday with NO answers please anything at this time will be of help to me I just want my life back I hate that my husband and 4 children and others have to see me like this. Thanks u so much

16 Replies

  • Have you seen a reflexologist? I cannot recommend highly enough, if everything else is failing.

  • Try to find yourself a very good osteopath, check his credentials really well. You could find you have a problem with your neck and vertebrae. Good luck.

  • Hi Jill, I had the same as you along with flashing lights etc in my eyes. After months of visiting my GP to no avail, Specsavers picked up that there was pressure in my head that was beginning to damage my eyes. I was then diagnosed with inter-cranial hypertension (head pressure to the rest of us) by a neurologist in Oxford.

    I eventually had a lumbar puncture done with a 2nd one a couple of years later. I was then given anti-seizure medication (topirimate) and citalopram. I now manage to keep my migraines, etc to an acceptable level with just the Citalopram as this gives the least amount of side effects.

    Keep pushing for help - it took me some time to get an answer too.

    Take care and hope you get some help.

  • Hi jill, i could have written this , i too have persistent daily headache which escalates to daily migraine. I wake with terrible pressure behind my eyes and the back of my head, my sleep is broken every night, i have one of those wrist bands that show you how much sleep you get and I'm lucky if it's ever 2hrs broken a night. I can't focus/concentrate or communicate properly most days.

    I have done everything you've done, had all bloods tested, magnesium, B panel, cortisole and folac. Not heard of results (3wks ago now) so assume nothing found.

    They concentrated so much on my head/migraines ans missed a problem with my jaw. I've had one operation and waiting another. Is your jaw ok, do you crack/click or pop when eating? It never gave me pain so didn't bother me but 2yrs ago all migraines started with eyes/ back of head & neck pain and no meds helped ( have oral morph and tablets they give people at the end of their life too ) nothing but sumatriptan injections give me a little relief.

    Keep fighting for answers.

  • I can't tell you how helpful it is knowing someone else knows what I'm going through. I've been on SO many meds for so long I can't articulate how I feel most days. Thank you!

  • It's absolutely terrible i know but you will get lots of support/ different things to try here.

    My jaw is absolutely causing all my pain.

    I'll update when I've had my next treatment and let you all know how it goes.

    Please ALL be aware your jaw can cause all your symptoms.

  • Hi. Do you have any other ailments going on like gi issues or any joint pain? I have a history of this with auto immune disease. I am diagnosed and treated now. If you have other problems going on which may not seem connected it is worth checking your inflammatory markers.

    Nothing ever comes back on scana for me either. Totally clear. It is not a neuro issue for me but the result of inflammation in auto immune disease.

  • Interesting. I have GI problems

  • Ok. Yes so did I. If you have rand symptoms going on together seemingly unconnected they may actUally be connected. Look at Lupus headache just as an example. Lupus is one form of the disease I jave. Often undiagnosed.

    Have your inflammatory markers checked x

  • Sorry that should say random. Very blurry eyes at the minute so difficult to type xx

  • I joined the world summit migraine support group. I found it very helpful. You get to listen to 32 of the worlds top migraine Doctors and there is a support group to for any questions. I was put through to the cluster headache group and spoke to someone who went on about a doctor that actually saved her life as she was suicidal, it could have been someone anywhere in the world but happened to be in this country not far from me. I went straight to GP the next morning and said I want a referral to see this doctor....I got one.....still waiting for app. The WSMSG cost £112 to join but for me was worth every penny. I have only listened to 2 of the specialists so far as their talks are at least an hour long. Good luck I feel for you. I was like that but now my headaches are less frequent 3/4 a week instead of 6 a week and much less severe. I'm taking all advised supplements which must be helping. X

  • Hi Jill so sorry you're suffering like this. I too suffer with the back of my neck, base of skull and shoulder pain which stops me sleeping, going to theatre etc. I've had migraine since I was 18 but the neck problem is just a few years.

    I'm about to start botox but am very interested in another ladis experience on this site (Cally). She has been diagnosed with TMJ which is a jaw problem. All the same symptoms as chronic migraine in the neck. Google it you may find some answer.

    In the meantime deep freeze gel helps me sleep. I think it just distracts from the pain. Good luck xx

  • Hi Jill, thanks for sharing - I empathise fully with that feeling of "just wanting your life back". I have daily persistent headaches and am 'diagnosed' by the neurologist as having chronic migraine with aura also. For me, amitriptyline has been the only thing that really made a difference - though I worry that's becoming less effective. I still feel that I'm trapped... like stuck in my own body and head... with little escape even through the drugs, yoga, healthy eating, fresh air, slightly better sleeping patterns, etc. What I have found helpful recently are 2 completely different things:

    1) Reading this really influential and helpful book on Migraine:

    I know it was written ages ago with an update only in 1992 - but there's some stuff that I've found helpful that no-one has ever mentioned to me before. It also gave me a bit of a sense of 'control' back over my body as I felt able to better understand what's happening to it.

    2) Listening to complex music! I know this must sound bonkers, but somewhere in the above book, Sacks mentioned how auras can scintillate at the same rate as light flickers or music beats... and you can change the frequency by listening to music! Maybe that's not a literal thing... but somehow, for me at least, listening to certain music distracts me and starts to make my brain calmer. I typically go for this:

    The 'Islands' album is my favourite. I'm not one for much classical music, but this is just beautiful piano music - sometimes with strings. I've now found most ambient / calmer but layered music can have the same effect. I'm back listening to all my old Pink Floyd records too!

    I know that these ideas might seem daft... but for me, they somehow give me a sense of me back. Above and beyond the medical, diet, etc things we all try... this book and the music have helped me change the story that I tell myself about me! :-)

    Anyway, sorry this is so long... Keep going Jill and remember you are still you and your life will come back to you... And we're all here for you too whenever you want to chat.

    Take care xx

  • You probably suffer from food inflammation. Try removing sugar, especially chocolate out of your diet. While your body is overly sensitive right now, consider removing dairy products and don't touch any alcohol! Keep a water bottle in freezer and place it under your neck when you go to bed. I have suffered from migraines for years. I have tried every technique and medication. I do use Rizitriptan medication a couple times a week and exceedrin every day. I am so much better than I use to be. The diet seems to be most people biggest problem. Most doctors don't even address it. Give it a try! I think you might get some real relief!

  • I removed sugar yrs ago, don't eat chocolate, cheese or processed sauces. I eat balanced carbs/sodium /increased water, nothing helped me.

    I do think diet is something to do with it but can't find any specific triggers.

  • Diet makes no difference to mine. I am afraid I don't believe diet affects auto immune disease though it may impact on less compkex migraine. I have eaten badly...eaten well. Drank alcohol...not drank alcohol. Makes no difference. With my disease under control now there are no 'triggers'. Just a migraine free existence for 3 years now. That is heaven. Treating the underlying disease was my answer. X

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