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24/7 Headache all day, everyday for 18 months

Posted , 18 users are following.

amber99286
amber99286

Hi All

I wanted to write my own story on here in hope that I can communicate with people that are going through the same thing, or have been through the same thing, and would take the time on reassuring the ones who are still on this nightmare of a journey that things can get better.

I am a 23yr old Female, my headache started March 2015, and ever since I havent had a moment without it.

My headache feels like a very tight pressure all around my head - like my head is being squeezed hard. I have sore areas on my scalp. My face is numb + tingley(feels like little bugs are running across my face) and also my face can feel like its drooping when its physically not. I have all the symptoms of migraine - light/sound sensitivity, and also smells make me feel sick. My eyes constantly ache. I get a throbbing pressure in my gums and behind my nose and also feel pressure in my ears (like when you are on plane). I developed tinnitus a month after my headache and it hasnt stopped ever since. My neck, shoulders and top of my back constanly ache like hell to - which doesnt help when my job consists of sitting at a computer 8 hours a day!

I have seen 3 neurologists - one diagnosing me with chronic tension headache, the most recent 2 I have seen have told me chronic daily Migraine.

I have tried Amytriptaline,Nortriptyline,Propranalol, and Candersartan (Apologies for the spellings)- these have had no effect at all. I have had the steroid injections in my head which gave me no relief. I have bought a mouth guard from the dentist as she said it sounds like I am grinding my teeth at night- after a few months of wearing this I didnt notice any difference.

I saw a Chiropractor who told me my neck is pushing forwards and blamed my headache on this, but after 4 months of attending 3 times a week I felt no different. I have recently payed to find out if i have any food intolerences - which came back that I had, but after cutting out the foods I felt no different. I really am sick of false hope and really am at my witts end.

I am waiting on an appointment for my first botox injections.

Im finding it so hard to lead a normal life with this and often have suicidal thoughts. The only thing that stops me if the thought of leaving my loved ones behind.

Its a nightmare trying to work full time with this, but also know if I claimed any disability allowences it would certainly make things easier by not having to be stressed at work, but would mean no money to pay bills - this would lead to more stress.

I feel so trapped and feel like im never going to feel ok again. I now suffer from anxiety + depression. It really effects my relationship with my boyfriend as I am always down and miserable, and we can never do things togther because of my head. I met him 10 months ago when I had the headache, so he has never really met the real me!

I feel no one understands apart from the people I have been speaking to on this site, but everyones story is different.

I really need some words of wisdom, and to know even though I feel so lonely, I am not alone.

Can anyone out there please offer any advise or share anything that has helped you? I cannot bear the thought of living like this for the rest of my life, and refuse to!

Thanks for taking the time to read my post

I look forward to hearing from other people that are also suffering from this awful disease!

Amber x

3 likes, 48 replies

48 Replies

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  • amber99286
    amber99286

    Posted

    Hi all

    Haven't been on here for a while, but thought I'd give an update. I am now on my 4th neurologist who suspects a CFS leak. There is fluid that protects your brain, and if you have a leak in your spine, the fluid drains and, leaving your brain to 'sag'. I have many of the symptoms of this, and I'm sooo excited to find out if this is it, as I will finally get a proper diagnosis and correct treatment ! I am awaiting an mri on my spine, and I am also being booked into a day care unit where I will have a high amount of caffeine put into my body. If the pressure is too low in my head, hopefully the caffeine will give my blood pressure a boost and i will see if it improved my headache at all. If it does, this is a sign I may have this conditon. Intercanial hypotension it is called (not hypertension).

    I pray to god this is it!!!!

    I hope everyone is doing as well as can be

    Amber x

  • joan33480
    joan33480 amber99286

    Posted

    I live in Ireland . I am 63 years old and have headaches since iwas 12 years old. It was only when i went to a neurologist who suffers from migraines himself and he told me that i have chroic daily migraines, I dont think doctors believed i was in terrible pain. oner the last 6 years I have had nerve blocks 7 rounds of botox 5 day stay in hospital for iv DHE 12 days in HDU getting iv lidocaine all the meds with terrible side effects , have gone over to Kings college hospital London to see professor Peter Goadsby tried tms machine and gamma core but of no help taking 10 mg memantine and naproxen now but still in pain . I have to go over to see prof goadsby again in May They are doing trials of CGRP in UK which looks very hopeful as it is the first thing  made to treat migraine. It wont be in Ireland till 2019.I have to pay myself for most of my treatments as my private health insurance wont cover botox or trips TO UK I got a cpap machine for mild sleep apnea last Wednesday .I went to bed at 4am as i am a full time carer to my 94 tear old Mother with my brother's help. I tried cpap and at 5am felt my head was going to explode. I have never had such pain without any relief. My brother had to do every thing as it even to lie on my pillow (alloydynia) . Today is the first day i got some relief and could function a little bit I would try and get an appointment with prof Goadsby as he an expert in migraine. Thats all I can tell you of my experience at the moment .Unfortunately I really have no quality of life and it is very upsetting looking at my Mother going downhill as we have always been very close. My brother is in bed now so I stay up so he can get some sleep without being disturbed for a few hours.

  • james03194
    james03194 amber99286

    Posted

    Is anyone still on here suffering? How are you all doing now? I am suffering so bad with these horrific symptoms of what I call pressure in my head as if everything is tightening up, it affects my eyes ears, jaw, neck and head this is a permanent feeling for 2 years now I don't know what to do or what's going on I'm desperately trying to seek some kind of help

  • elizabeth142
    elizabeth142 amber99286

    Posted

    Hi Amber

    wow! you poor thing!

    i suffer from migraines, i have yo watch wgat i eat. Has your dentist checked for TMJ of the jaw? is your jaw upper and lower sitting in the right place?

    or get a referral to the migraine centre, and try get a referral to the neurologist aswell.

    it rules more things out,if you do. ive befn through similar.

    please let me know how you get on.

    one thing i will suggest to you is start meditation it really helps you alot.

    All the best

    liz

  • suzana86
    suzana86 amber99286

    Posted

    Hello Amber,

    I am really sorry to hear about your experience. I am also a migraine suffer and a month ago I started to have the tinnitus, numbness on my right leg and face and pressure headache on the right side on top of my head, also I am having this eye flashes and zig zag lines, simmering flashes in my eyes, even now when I am typing this I have the symptoms. Will go and see my GP on the 7th of feb to see what to do next. I know how you feel, as this affects my life too. It's very frustrating but my advice is to drink ginger tea and camomile tea, I found it that really helps me with the anxiety and the headache also try to distract your attention with something which you like, and you will feel better trust me.

    Suzana x

  • annie84157
    annie84157 amber99286

    Posted

    Hi Amber, sorry i know you put this on a while ago but your story sounds exactly like mine! ive had tension headache problems for 16 months now and struggling to find anything that helps, im so fed up with it!! id be really interested to know if you found something to help your headaches? thank you!

  • lucy20665
    lucy20665 amber99286

    Posted

    hiya , i have also been suffering with these symptoms, i also have been gettin bad pain / pressure at the back if my head , i have also been getting tingling feeling in the back of my head do you get this ? my anxiety is through the roof

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