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

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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.

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  • Posted

    Hi, thanks for replying.

    To be honest, it's just nice to know someone else knows how I feel for a change! I've been feeling like everyone thinks I'm imagining it/making it up. It's been very frustrating.

    I'm glad you seemed to have found the problem to your migraines. This hasn't been something they have picked up on for me, but I will get it looked into! I know my overbite isn't too bad, as I've had braces and my dentist has never expressed concern over it. But will definitely look into whether that is my problem. A family member has also told me since to look into whether I'm grinding my teeth in my sleep, apparently that can cause migraines too.

    I'm seeing my dentist in a few days time so shall ask him if there is any sign of my grinding my teeth etc.

    Thank you for sharing, really appreciate it. Hope your treatment continues to work!

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    • Posted

      It becomes part of your life to try and figure migraines out. Dr appt, medication trials, therapies. Been there for 30 years. I feel my life is made up of dr appts and that's where all my money goes. One thing I haven't tried yet is a special ear piercing my neurologist suggested. Only a true tattoo artist can do, but they place a piercing somewhere around your ear, not sure where, that has been helping some. Sometimes you are willing to try anything. Good luck.

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  • Posted

    Hey Becky-Louise,

    We seem to have very similar issues, I have had my migraine for nearly 8 months, and I don't have many external triggers other than light and sounds.

    I've done the bad doctors as well, all I can really recommend is to find a doctor who seems to listen, who I eventually did, and stick with them! I honestly could not tell you enough how much I love my doctor! She has made my whole situation seem a bit more bearable!!

    I'm on my 10th medication now I think…and they are offering me sodium valporate, and I'm a little nervous to say the least, especially with all the side effects!!

    I am so sorry you're going through this at such a young age (I'm 25) and I completely understand the hopeless feeling! And I especially understand the feeling that no one else understands what you're going through!

    Try to keep your chin up, you have us if that helps? I've heard some encouraging things about the botox treatments, so that may be my next step….

    Louren x

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  • Posted

    Migraines are really horrible but a surprising amount of people really suffer them regularly: http://www.statista.com/statistics/188790/adults-in-the-us-with-severe-headache-or-migraine-since-1997/

    My wife was also suffering terribly and it turned out she was actually grinding her teeth in her sleep. After a trip to the dentist, he prescribed a special mouthguard and things have been much better, although she does still have the odd problem from time to time.

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  • Posted

    Hi all really worth persevering! I'm 47 and I know menopause has made my migraines much much worse. Grtting my third set of Botox shots next month. Not the whole answer for me but does give enough relief to start paying for them myself. Anyone had any luck through the NHS?

    Starting to try B2 and magnesium supplements on top with guidance from my neurologist.

    Do check out dental issues, I clamp my jaw when stressed which is not my triggrr but does not help. Try saying "banana" really slowly and exaggeratedly it helps loosen the jaw!!

    Support from othrr sufferers really helps too

    Helen xx

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  • Posted

    Hi Duvet. re...."starting to try B2 and magnesium supplements on top with guidance from my neurologist. " ....check as I believe this would work so much better if combined with folic acid..
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  • Posted

    Already taking 500mg Folic acid, been part of my daily one a day for 15 years. Also adding in 200mg CoQ10 as per Migraine Trust website. No change to migraines after 1 month but will try another couple of months!
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  • Posted

    Hi my name is Stacey I am doing this for my daughter she is 14 has had horrible migraines for 4 and a half months now I am so lost I need help for her she has had a MRI and Mra and EEG and been on several meds I don't know how to help her a friend takes treximet and he gave me two for her to try I gave her one yesterday and I think it helped not sure have to find a neroligst because we took her to JFK Neroscience and they don't know how to help her she missed3 months of school she is trying to go back but her pain is relentless I just want to help her please any advise thanks I am at the end of my rope I can't imiange her
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    • Posted

      Hi Stacy,

      I know its been a while since you posted, but I just read your message.

      Firstly what I will say is, I know as much as anybody that when you see your own child in so much pain, you want to try and do the right thing, but I promise you that using someone elses med, could do more harm than good.  If you havent done by now you need to take her to see a really good neurologist, they are the people who can really help your daughter.  They have many more drugs at there disposal than a standard dr.

      I have to see my neurologist regularly as I get severe cluster headaches and hemiplegic migraine.

      He may prescribe an epipen type injection called Sumatriptan, or the brand name is Imigran and for me its been a lifesave!

      Good luck to you and your daughter Stacey, always here for support.

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    • Posted

      Hi. I Was hoping if you could tell me if you ever figured out anything with your daughter my daughter is 14 years old and going through the exact same stuff right now. I have taken her to every doctor and no medications have worked
      Report Reply

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