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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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  • Becky-Louise
    Becky-Louise

    Posted

    Hi everyone,

    Sorry j haven't been on for a long time, and I'm sorry if I haven't replied to everyone's posts!

    Just going to post an update for anyone wanting to know how I've got on and if anything has helped.

    I've had some success in helping my migraines but it hasn't fully got rid of them, but myself and my life have improved so much.

    I've tried my best to cut out painkillers like paracetamol and cocodamol etc as much as possible to avoid rebound headaches. When I've got a migraine I take Rizatripton tablets for pain relief and I find these really help.

    But what has given me the most success is that I've been put on blood pressure tablets by a migraine specialist- not actually sure why I needed them, my blood pressure has always been normal, but he said they help, and they have! I'm on 4mg of Candesartan daily.

    Now I usually just have a small niggling headache around my eyes everyday instead of a full blown migraine, and the amount of times I have an actual migraine has reduced massively. Sometimes I go a full week without one!

    My neurologist at the Walton Centre in Liverpool is also arranging for a nerve block so hopefully this will help further.

    I can actually go out and live my life now, for the first time in ages I've been able to go out for a nice meal with my family/friends, in a busy restaurant and drink alcohol without instantly getting a migraine and ruining my night. I can go to the cinema and enjoy the film I'm watching instead of counting down till it's over so I can go home to bed.

    I hope you all find something that can help you! But ask your doctor about trying blood pressure tablets if nothing else is working?

    All the best everyone xx

  • kate89317
    kate89317 Becky-Louise

    Posted

    Hi Becky, I'm Katie and from the uk I'm also 20 years old and im in exactly the same boat as you are I've suffered with constant pain in my head just over 12 months now and when the pain level rises that's when it becomes a severe migraine . I've Tried everything possible I wonder have you tried the other group of triptans (imigran) there are other types that are from the same group but a different the of medication to treat it. Also acupuncture and Botox are also treatments. I don't know if you heard but there's a piercing called the daith which is in the ear is meant to work you can google about that and see for yourself other sufferers have found it works. My migraines has ruined a lot of my life. I got kicked out of college and sacked from my job to the point where my own family thought I was faking it. I know how hard it is and how debilitating it can be but there is light at the end of the tunnel. I am seeing a specialist in migraines this month who I have waited for an appointment now for 7 months ridiculous I know but I don't think There Is a trigger that are setting you off as the pain is constantly there no matter what. I felt the same with my doctors not doing anything to help I was prescribed sleeping tablets for 5 days however even then they were reluctant on giving me them even though I hadn't slept for 3 days I eventually went to the hospital were I was rushed for a mri which was clear but I still felt that I was being pushed aside. They don't know much about migraines and that's why it's hard for doctors to help. I was also put on a magnesium supplements and they did nothing for me but maybe they might work for you. I hope some of what I said may help you and I'm sorry for babbling on but it's nice to know your not alone. X
    • Becky-Louise
      Becky-Louise kate89317

      Posted

      Hi Kate,

      Yeah I have Imigran injections for when my migraine gets really bad, and I've tried Botox and acupuncture already but neither helped.

      I've heard of the piercing but I've heard mixed reviews on whether that works or not. It works a bit like acupuncture and since that didn't work for me, I don't think the pricing will, thanks for the suggestion though.

      Waiting for doctors appointments at the hospital is painful, they take so long to arrange the appointment and then you only get like 5/10 minutes. Make sure when you go you don't let them shrug you off. I had that problem all the time.

      Hope they manage to find something to help you. You will get yourself sorted and be able to get back to college etc. Good luck! x

    • wildjflippin
      wildjflippin kate89317

      Posted

      I'm going to try the piercing   what can it hurt?  I've tried everything else!
  • wildjflippin
    wildjflippin Becky-Louise

    Posted

    have you gotten any relief?  I have daily headaches but not quite as bad sounding as yours.  I am surprised that supratriptans do not work on you.  Usually if that occurs you are not having migraine headaches but something else.- my neurologist injects a local into your head and it numbs the whole head. Maybe try that for at least a day or so's relief.  Hugs  JF
    • Becky-Louise
      Becky-Louise wildjflippin

      Posted

      Hi JF,

      I've had some relief now that I'm on Candersartan, 4mg daily, as log as my blood pressure and blood tests prove okay the dosage will keep being increased every two weeks, so hopefully I might get more relief then.

      I take Imigran injections or Rizatripton tablets when I've got a migraine and they help.

    • Becky-Louise
      Becky-Louise

      Posted

      I'm also waiting for an appointment to have a nerve block as well, hoping that will work!

      Hope it continues to work for you.

      All the best xx

  • StevenRose
    StevenRose Becky-Louise

    Posted

    Hi Becky-Louise,

    The nerve block injections are good, but for me the benifit only lasted a few days.

    Just something for you to be ready for, they are quite painful and you have to lay down a bit before they will allow you to leave.

    Hope they work for you, good luck

    • Becky-Louise
      Becky-Louise StevenRose

      Posted

      Thanks for the heads up, is it as bad as having a spinal tap do you know? That was the worst thing I've ever had done x
    • StevenRose
      StevenRose Becky-Louise

      Posted

      I have never had a spinal tap, but I can guess if you have had one of those you can pretty much handle anything and of course the severe pain of headaches are no better
  • wildjflippin
    wildjflippin Becky-Louise

    Posted

    the local I had in my head did hurt but it wasnt unbearable (or as bad as some of my migraines)  just feels like shots in the head which is what they are!  
  • StevenRose
    StevenRose Becky-Louise

    Posted

    Becky-Louise, do you get severe headaches on one side of the head or all over?  If its just one side they can just give all the shots on one side. 
    • Becky-Louise
      Becky-Louise StevenRose

      Posted

      It can be different each time. It's mostly the left side of my head and forehead, but sometimes I get pain at the top of my neck, and if the migraine is really bad, all over.
    • StevenRose
      StevenRose Becky-Louise

      Posted

      I mainly get it on the right side, but like you sometimes on both sides, so I get the nerve block injections all over.  But currently on botox which is helping the actual migraines I get with cause me to go into hospital because I become paralysed down my left side, they call ths hemaplegic migraine, but since I had the botox it seems better.

      Do you manage to work or study with your headaches Becky-Louise?

    • Becky-Louise
      Becky-Louise StevenRose

      Posted

      Oh god, that sounds awful, I'm glad that the Botox is helping with your migraines.

      And at first when they started I found it very hard to manage at uni and work, especially since I was working in a pub which could get very loud etc.

      I had to leave uni because I just couldn't cope, everyday I was having a severe migraine and was on amitiptyline which made me like a zombie, couldn't even get out of bed.

      But I'm working in an office now and doing and NVQ which is going a lot better for me. My sickness level is high though because I still get the severe migraines (I've also been diagnosed with Crohn's disease since too which makes me miss work a lot). I think because all the work for my NVQ is work based, it's easier to complete my qualification than having to study/do exams.

    • Becky-Louise
      Becky-Louise StevenRose

      Posted

      How do you manage to work/study with your migraines? Are your work accommodating? Especially when you need to go to hospital
    • StevenRose
      StevenRose Becky-Louise

      Posted

      Its interesting to here how your migraines have affected you Becky-Louise and I realise that we all have issues that affect us and our lives greatly.  I am very lucky I have a very understanding company I work for, and realise that my condition is not just like have a cold every once in a while.  I am 100% honest with them and give reports to from my drs as often as I can and show them all my appointment letters.  It helps that I have been with the company over 10 years and must have done a good job in that time.

      I know what you mean abiut amitiptyline, I have been taking nortriptylene which is similar to your med and they have wanted me to increase it, but it caused me problems and at one point I was under investigation for parkinsons!  but now I am weaning myself off them and some of the other drugs, now I am having Botox, which seems to be helping.  My main med is sumatriptan injections which work like a dream on my headaches.

      Good luck with your NVQ it must have been annoying to have to give up uni.  Maybe when things settle down you can go back and finish your studies.

      Good luck

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