Constant headaches can't cope!

Posted , 5 users are following.

I've been having constant headaches for months now and I'm finding it hard to cope. They start at the back of my neck mostly on the left side in the occipital area and its such and intense pain like something has been tied in a knot back there the pain goes over my head and into my eyes on both sides where it is an intense pain behind my eyes. If I lean forwards, tilt my head or lay down I get such a huge amount of pressure in my head it feels like my eyes and ears are going to burst. I really struggle sleeping as laying down is so painful, an the lack of sleep is making the pain worse. I have had a ct and mri which came back clear. I was started on pregabalin for chronic pain which didn't do anything and I have just been weaned off and am being referred for botox. I just want to know what is going on there must be something that is causing this pain and I don't understand why the doctor and neuro is just happy with bot finding out what it is! Does this sound similar to anyone or has anyone experienced anything like this I am just completely at my wits end. I can't function day to day my memory is getting bad my mood is so low I just want to know what it is so I can work on getting better.

Sorry for the rant and thank you in advance.

**I have had migraines since being a child and they are managed on topiramate/topamax however these headaches are new and nothing like the migraines I get.

0 likes, 16 replies

16 Replies

  • Posted

    hello RachRoux, these are like retinal migraine. I had them since 2 weeks now until recently something burst in my head which left me with a right icy brain. Still the pain is here. Doc prescribed me anti migraines but am sure these are not mere migraines. have you tried hot compresses?

     

    • Posted

      I'm constantly using heat pads they are the only things keeping me going at the moment. I have such terrible sensitivity to the light my eyes are so painful to adjust to the light even when it's not that bright it's like sudden sharp dagger pains behind my eyes and I can't see properly until my eyes adjust to the change of light. Even when I have migraines my light sensitivity isn't this bad! I will have a look at retinal migraines, I did have a retinal migraine a few years back and lost my vision but that was very much classic migraine symptoms with temporary vision loss. I'm getting so dizzy with this feeling like I'm on a boat or like I'm going to fall. I hope you manage to get to the bottom of it. If you do let me know Xx

    • Posted

      Nope am still struggling, went to different ophtamologist recently, have you checked your eyes? Its good if you do. sometimes pressure in eyes causes migraines
    • Posted

      Yeah I've had my eyes checked and all is okay. I've done the same as you and been to a different eye doctor just to make sure.

    • Posted

      Oh god its such as mystery. Me too I dont knw what it is. am still suffering too. Hopefully someone else might help.
  • Posted

    Hi

    Have you had any MRI or other scans? If yes what did it show?

    • Posted

      Mri of head neck and spine clear and ct of head clear
  • Posted

    Please bear in mind, MRI's vary, quite a bit, so it's possible to be tested in a machine with the wrong resolution (it took a couple of attempts to get clear images of my MS). As there's a lot of references to pressure, has hydrocephalus been considered?

    • Posted

      Wendy I as readin about hydrocephalus, is there any treatment  for that? At times i get the impression that my brain has swollen ;/
    • Posted

      Hi, I have intermittent bouts of hydrocephalus as an aftereffect of brain surgery, it's elevated cerebrospinal fluid pressure, I was told that mine was low level. It certainly doesn't feel it. It's like my brain is being crushed. The only thing that relieves the pressure at all, is ibuprofen. My surgeon said that options might be available later on. I don't really want any more 'messing about with', I seem to recall mention of a shunt (?!), though, Of course this only applies to this particular condition. As I'm retired, I can go with the 'oh well' approach, not a practical option for most. Sorry I can't offer any particular help.

    • Posted

      Your welcome, I hope you find a workable solution very soon. Take care.
    • Posted

      I hope I got a wrong MRI result too. I moved little bit in the scanner so I'm hoping the white spots on my brain were from that. ??

    • Posted

      Hydrocephalus has never been considered no. Mini stroke, Intracranial hypotension, Chiari Malformations, MS have all been investigated and ruled out. Sorry to hear your ms took so long to get clear images of I can understand how frustrating it is.
  • Posted

    Chronic Headache really sucks, I understand that, I do. The worst is that many people have difficulty truely believing we live day in , day out, with headache that would send most people to hospital. In you case, you can be possitive about the fact that you MD has at least investigated you structurally with an MRI and CTscan so no mass or aneurym, yaa. I've been where I actually wanted something, so maybe they could fix it (NOT)!! Pregabalin is only one of many drugs I have tried for chronic headache ( although mine is somewhat different they will call us all chronic undifferentiated headache in the end) , so don't give up. Actually, I do do Botox as the pain of headache always has interplay with the neck and it has made about a 50% improvement in this area. So..Good Luck. 

    • Posted

      I'm glad to hear your experience with botox is a positive one. I will definitely give it a try and see how things go for me. I have tried other meds as well as pregabalin with no results also. Pregabalin was the one med my body didn't immediately reject however the withdrawal was pretty nasty.

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