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Migraines everyday, all day, for 9 months. Help!!

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Becky-Louise
Becky-Louise

Remember your worst migraine. How much pain you were in and how you just couldn't do anything. That's how I am everyday.

Right so I'm a 20 year old female, I'm and student and work as a waitress part time.

So, I started with a headache on the 18th January this year, pain killers didn't touch it. Woke up the next day and still had a terrible headache.

I have a terrible headache all day, everyday, without fail. It's got to the point now that I'm stressed; fed up, hardly sleeping, can't concentrate at uni or any time really.

Please understand that the pain never goes, the headache never ends. I have literally had a migraine 24/7 for 9 months now.

I wear glasses (short sighted) but I know it's not my eyes causing the migraines.

I've cut out everything that's apparently supposed to aggravate headaches. Stop drinking caffeine, stop eating chocolate and cheese. No change in the headaches.

This continued for a week or two before I went to see my GP who referred me to a neurologist.

The first neurologist thought I had tension headaches caused by stress.

At this point, I wasn't stressed at all, not with uni or work, nothing. So I didn't quite understand this diagnosis.

Anyway he put me onto tablets called amitriptyline, which is an antidepressant, and told me to gradually increase my dosage up to 50mg a day. This didn't help at all, had horrible side affects.

I then saw another neurologist who diagnosed me with migraines, put me into Topamax, which are an anti epileptic drug meant to also treat migraines. I got my dose up to 100mg within 3 months and the side affects were horrible and didn't help at all.

I've had a CT scan, which was normal. Had an MRI scan, which was normal. I've also tried Imigran and some migraine medication that melts into your tongue, with no affect what so ever.

After trying all this, an idea was put forward that I could have raised intracranial hypertension, so yesterday I had a Lumbar Puncture. The pressure was at 19 and a half (apparently if its over 20 it's high), so it's not thought its that. The migraines were worse for a week after the lumbar puncture, I couldn't even sit up without being in agony and being sick. Spent a week in bed unable to move.

I've got another type of MRI scan booked for the end of this month that's apparently going to look at the veins/blood vessels in my head to see if there is a problem there.

I feel like I'm not being taken seriously now by doctors, because "there isn't anything to be worried about, like a tumour" as I'm always told! As much as I'm so very glad I don't have anything serious to be worried about, I hate spending everyday in so much pain that I can't function.

Please don't think I'm over reacting/attention seeking/whatever, but I am literally fed up and can't cope. I can't get a minute of relief, I'm constantly in pain (different variations of pain, but pain all the same). As I'm writing this I'm crying my eyes out because I haven't managed to sleep more than 3 hours a night in that past 4 days. I'm exhausted and depressed now. I've even told my GP that I am so depressed now, I have thought on more than one occasion of overdosing just to end this pain. And he literally turned me away saying he couldn't do anything. I feel so defeated.

If anyone has had this type of problem before or knows someone that has, please let me know.

24 likes, 741 replies

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  • StevenRose
    StevenRose Becky-Louise

    Posted

    Hi Becky-Louise,

    Well you are at the point where I was a year or so ago and I know from experience its tough to say the least!

    I had to have steroids while they worked out what to give me to control pain. 60mg a day.

    So this could be an option for you.

    btw the maganesium thing that someone is talking about didt work for me.

    Good luck and keep nagging drs

  • tedleger
    tedleger Becky-Louise

    Posted

    Not sure if you still have the migrane, the last post on this thread was 6 months ago. Have you tried reflexology? I know it is grabbing at straws, but my dad is a reflexologist, and he had a number of patients for all kinds of pain that were on all kinds of medicines that never helped the pain. If you never heard of it, it isn't voo-doo. It is actually a chinese practice of accupuncture but without the needles. The pressure points are pushed by hand and with utinsils that don't break the skin. I have headaches, never migranes and they are relieved by the reflexology. I have actually had one for 5 days straight, but it isn't like yours. The reflexology gets rid of it but it comes back. And once you learn the points you can do it to yourself. Before going to a reflexologist you can look up on line the pressure points for a headache. You may want to get someone else to push the points though because normally, it is hard for someone to put enough pressure on their own selves. It will hurt a little to push the points, but the relief is worth it. I hope this works, I hate the headaches I get, I don't know what I would do with a migrane, especially lasting over a year like you have. - Ted Leger
    • Becky-Louise
      Becky-Louise tedleger

      Posted

      Hi, no I haven't tried that, not sure what it is really.

      But will have a look into it.

      Thank you

  • danii786
    danii786 Becky-Louise

    Posted

    hi becky

    i got the same thing for about a year 

    throbbing headaches , always feel tired , sometimes get that pain in your head when you have a brain freeze but never goes . had them all doesnt go away its annoying that i cant enjoy my life , also i have ibd aswel sp that puts me down also 

    i suggest drink green tea instead of normal tea

    try and sleep early before uni as i am 21 and work 7 days a week i know about sleep.

    try and open a window get some fresh air and have a warm or cool shower depending on weather. 

    dont look at your phone in the dark may make it worse 

    give yourself a break and read a book or jus cloae your eyes and breath 

    im just giving pointers that i have done which kind of helped 

    smile 

  • Des0609
    Des0609 Becky-Louise

    Posted

    OMG Becky... I felt like I was reading my own Bio. EVERYTHING you wrote is what I have been going through as well. My headached however started when I was 16 and now I am 41. sad I have tried dozens of medications, had an MRI, Lumbar Puncture to look for MS and other auto-immunes, etc. I was just diagnosed with severe sleep apnea (both obstructive and central) and they are thinking that will help once I get on the machine. Sorry... but I am doubtful that has anything to do with it but I am willing to try anything at this point. I even told my Dr that if they wanted to send me to Zimbabwe to have them drill a hole in my head to release a demon... I am willing to try anything at this point. I just want relief. sad
    • Becky-Louise
      Becky-Louise Des0609

      Posted

      If you find any relief from the sleep apnea machine, let me know.

      Both my parents have sleep apnea, is it something that's hereditary?

      Hope you get to the bottem of it!

    • Des0609
      Des0609 Becky-Louise

      Posted

      I got my results today and apparently my sleep apnea is pretty bad :-/ And I am not sure if it is hereditary or not but my father does have it also. They said my oxygen levels were dropping to 77% and that could definitely cause headaches by starving the brain for oxygen. Of course it does not help that I am overweight as well but doing any physical activity makes my head throb more sad Hard to exercise when it makes you twice as miserable. Once I get everything set up I will definitely let you know if it even helps a little. Any relief, even slight, is welcomed. I am glad my husband found this forum for me. I thought I was the only one in the world suffering like this although sad to know others know this torment. sad
    • Becky-Louise
      Becky-Louise Des0609

      Posted

      Aww, hopefully this is the cause of your migraines.

      And I feel the same way when exercising. I get light headed and breathless just walking to the top of my street. I'm not massively overweight, but could do with losing a little.

      Might have to have a look into this, my sleep pattern is awful too.

      My mum has only recently been diagnosed with S.A, been using her machine about a month now, had her first CPAP check up, and she's already getting 6 hours sleep a night and feeling much better.

      So hopefully you start improving fairly quickly.

      Yeah I used to think like that about my migraines, that I was the only one, but these forum has been amazing. It's great just to have that support there from people who actually suffer with migraines. It's hard for out family and friends to understand if they have never experienced a migraine.

      I would love them to just swap heads with me for a day, and maybe they would.

      I've been suffering for about 18months now, and my friends still don't understand I can't hack a night out like I used to, or go to noisy places.

      I hope you find this is the cause of your suffering, keep me updated smile

      Feel better soon x

    • Des0609
      Des0609 Becky-Louise

      Posted

      I will keep you updated on the progress. It will be a few, since the machines are expensive. I would definitely look into the sleep apnea if both of you parents have it and if you are known to snore. I have had a lot of feedback from others with sleep apnea that rave about how amazing they sleep now after getting use to the machine. It is obviously awkward at first and uncomforable but once you adjust to something on you as you sleep the increased oxygen lets you actually sleep properly and stop you from being tired all the time. I am hoping this helps that end and the headaches. So for your own overall health. Look into the sleep apnea for yourself! Don't need other stuff going wrong too!
    • Des0609
      Des0609 Becky-Louise

      Posted

      Hey Becky-Louise smile Just updating you. Last night was my first night with the CPAP machine for the sleep apnea... It was a rough night sleeping, odd to sleep with a mask on and as I kept moving around I broke the suction a few times and it was making a whistling noise. It is going to take a lot of getting use to! And maybe a new mask style. But this morning I woke up with a worse headache then I had yesterday... sad I don't think the CPAP *MADE* it worse... but did not stop it from being bad today anyway. Maybe after a month or so it will start to help. Here is to hoping! rolleyes
    • Des0609
      Des0609

      Posted

      Hey Becky-Louise smile Updating you on the progress... Or lack thereof sad Been almost a month now on the CPAP machine and headaches have not changed in frequency or intensity sad And I have been using it EVER night. Seems my Neurologist has given up on me. He is passing me off to another neurologist for a "second opinion" and this other neurologist is in the same practice sad Why not just use them a a consult... instead of passing me off *Sighs* Well I go to the new neuro tomorrow. We shall see if she sees any hope. :-/
  • MelG321
    MelG321 Becky-Louise

    Posted

    Hello, I did a search and found your post and I swear I was reading something I wrote myself almost word for word. I seen you posted this 11 months ago and didnt read through all the comments, but did you ever figure anything out? I am currently exactl where you are when you wrote this. Been to the ER, had CT, MRI, EEG, EKG, lumbar puncture and any other test done all which came back normal. My regular doctor prescribed me with anti depressants to "help", said i had stress or anixity/ depression which I didnt believe but was willing to try anything and now if I try to stop taking them I am a mess. They tried low dose sleeping pills along with muscle relaxers. Nothing. Neurologist prescribes medication afer medication and dont you know all which need "a few weeks to work in your system" all while im in pain and still I sit in pain as I feel im being blown off for my "headache". Im currently on 125mg of topamax and dealing with the side effects because its lightened the pain a tad bit daily but i do still have extreme pain daily. I HATE living like this. This is NOT me. And yes, everyone thinks that im "being a baby" about it or acting like its a bigger deal but by reading your post I feel you may be the only other person in the world that understands!!!!
    • Des0609
      Des0609 MelG321

      Posted

      I felt the same way Mel. It is good to know I am not the only one yet sad that others are going through this much agony. And people just don't understand. I hate when the doctors write in their notes "Chronic headaches" or something to that effect. I always correct them "Not just Chronic... they NEVER GO AWAY! It is CONSTANT! The only difference from time to time is how intense it is. If it is tolerable throbbing or stabbing pains that make me grab my head as tight as I can hoping for relief soon and then crying which just makes your head throb more..."
    • MelG321
      MelG321 Des0609

      Posted

      Yes I thought I was alone in this too, I know others have headaches maybe even a day or two but this is 9 months of pain everyday. Nothing helps! Ive tried everything from changing my diet, to a new bed (thinking my old one was causing it somehow), every over the counter pain med, all "home made" remidies, NOTHING! And I know others try to help, dont drink caffine, stay away from loud noises... blah blah when really none of that changes or effects me in any way. I wake up & go to bed with one. I hope we all can find something soon.
  • Tobamory
    Tobamory Becky-Louise

    Posted

    ive just been away to spain, and only had 1. Im starting to think its my house, Dust lack of Air.

    Im trialing sleeping at my dads soon, even the idea of a bit of feng Shui, gota be something linked.

    Could even be the sea level of my house as opposed to where i was in spain....

    Grrrrrrrrrrr

    • ziggeryzag
      ziggeryzag Tobamory

      Posted

      I think its do do with the amount of positive ions in the air near the sea... And in a different climate.
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