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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

741 Replies

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  • Moe699
    Moe699 Becky-Louise

    Posted

    I have the same problem every single day!
    • susan43558
      susan43558 Moe699

      Posted

      I apologize if I have spoken to you before. I used to get what were called atypical migraine/cluster headaches everyday for a long time. I cured it by avoiding alcohol and replenishing my body with the fat soluable vitamins as well as b12 liquid, folate (not folic acid!), ferrous gluconate (iron), and a probiotic. So, vitamin A,D,E and K (probiotic makes the K.) It takes a few months for the body to recover but I noticed less and less headaches until now, they are virtually gone. No doctor told me to do this. I just tried it and it worked. Now, I can have alcohol on occation, but if I drink too often, they come back. I think the alcohol was stripping my body of nutrients. If you don't drink alcohol, it could be that your body is stripped of nutrients in some other way. I had to go to a Vitamin Shop to get the special b12 liquid and folate. Do not replace these with cheap b12 cyanocobalamin or folic acid. Also, the Emergency C packets dissolved in water three times a day helps get a kick start on the vitamins. May the Force be with you!!
  • elaine_88639
    elaine_88639 Becky-Louise

    Posted

    Becky,

    My story from Sydney Australia is very similiar to yours.

    When I see my doctor this Friday I am going to ask to see Musculskeletal physiotherapist.

    I notice before I get migraines,my shoulders and neck are VERY tense.

    Today I have sucessfully used Day Mersyndol.I pray you get relief,as it is very demoralising and depressing.love,Alaine

  • thekat0
    thekat0 Becky-Louise

    Posted

    Becky-Louise,

    I just found your post and read through nearly every response you ever gave. I read most of what other people suggested for ideas to help you as well.

    I see you haven't updated in a few months - is there an update? Have you found relief? I'm going on day 33 (nothing compared to what you've been through) and I'm looking for alternative solutions. I was hoping you had had some luck recently!!

    Please update us!

    • Becky-Louise
      Becky-Louise thekat0

      Posted

      Hi there,

      Sorry I haven't updated.

      I've not found a reason/treatment, but my migraines haven't been as bad as they started out, which is good considering it's been nearly two years.

      I'm not sure what's made that happen, but I've changed jobs within the last 6 months and also tried acupuncture. So not sure which it would be.

      Would definitely recommend trying acupuncture. It was deferent and also a little relaxing. I need to get back to it actually!

      Have you been taking any pain killers?

      The only thing I take now is ibruprofen (in small moderation) when I really need too.

      Cut co codamol and paracetamol out, and anything stronger than them.

      Hope you get some relief soon. I know it can be so very difficult to cope with.

    • thekat0
      thekat0 Becky-Louise

      Posted

      I've tried topamax (horrible side effects) immatrex and maxalt. 

      They're trying to start me on on Indreal - but I'm skeptical because of the last drug and it's awful side effects (I'm still recovering.) 

      Over the counter pain pills don't do anything sad

      I had a nerve block done Thursday which just made things worse.

      I'm looking into acupunture -- just found out today it's not covered by insurance. So it would be completely out of pocket.

      I recently heard going gluten free would help - trying that too.

      I was also just told about oxygen therapy; a friend of mine has horrible cluster headaches and migraines.... ten minutes of pure oxygen and she's good! I just emailed my doctor about this today. We'll see how that goes.

    • Becky-Louise
      Becky-Louise thekat0

      Posted

      Ahhh take it then your not in the UK? Your doctors move a lot quicker than they do here!

      Yeah my auntie suffers from cluster headaches and has oxygen therapy, and it helps her massively.

      It all depends on what "type of headaches you have"- of you ask me this is what stumps doctors the most. I don't understand how they classify them but seems like very fine lines between them.

      I've never been offered that treatment, but I've been in hospital before and had oxygen and it never helped.

      But hey ho, each person is deferent and it can only help.

      Have you tried a chiropractor? Not sure of insurance would cover that but might be worth having a consultation to see if they can help.

    • thekat0
      thekat0 Becky-Louise

      Posted

      Correct, I am in the USA. If your doctor's move any slower than this idk how you're surviving! I can't imagine going two years without an answer.

      I have not tried a chiropractor. They kind of freak me out because they can mess you up worse.

      I'm trying to find a cheaper (less than $100 a visit) acupuncturist and maybe go that route.

      Have you tried changing your diet any? Have you noticed a difference?

    • thekat0
      thekat0 Becky-Louise

      Posted

      Update:

      I've been using Claritin and eliminating gluten from my diet (not 100%, but mostly gone.) And my migraine has gone from a 7-8 to a 3!

      I can't remember if you have tried either of these but I thought I would suggest it! It's not gone all the way but it's so much better.

  • Becky-Louise
    Becky-Louise

    Posted

    Hi everyone,

    I'm sorry I haven't been on here for months, everything in my life has been a bit hectic ATM!

    I'm sorry, I haven't read any individual posts but I will get round to replying to them soon.

    Anyone wanting an update:

    I'm still suffering everyday with migraines, though they aren't as bad as they used to be.

    Surprisingly I think changing jobs has helped, or I'm hoping it has anyway!

    I've gone from working in pubs to ear king in an office. Despite looking at my computer everyday, I'm not in a stressful environment anymore.

    Though my neurologist has basically given up on me, and referred me to the Walton Centre in Liverpool. I've got an appointment for early January so fingers crossed they can help me find some treatment/get rid of my migraines!

    Hope your all doing well, and having more luck than myself.

    Have a merry Christmas too! 

    • thekat0
      thekat0 Becky-Louise

      Posted

      Good luck Becky-Louise!  Merry Christmas to you too!

      Please keep us updated.

       

    • Becky-Louise
      Becky-Louise

      Posted

      Haha ear king?

      That's meant to be working in!

      Oops!

  • penny14384
    penny14384 Becky-Louise

    Posted

    Becky- I feel for you because you are so young. I am 64 and have had migraines since my early 20's. They have progressively gotten worse. Like everyday. I have seen a neurologist and I am on 2.5 mg naratriptan. I find it helps but it takes up to 3 hours to work. I see a lot of people on this forum have not had any luck with triptans.

    i have not had a work up with all the tests. I will see my doctor because they are now every day instead of every other day. Good luck yo you.

  • charleston
    charleston Becky-Louise

    Posted

    I've been dealing with migraines nearly every day for 7 years now. The odd days I wake up without them are like a really intense version of that feeling when you realise your hiccups have just stopped and you wonder if and when they'll kick off again.

    I've tried all kinds of painkillers, anti-depressants, muscle relaxants, epilepsy treatments, triptans, and beta blockers, and I can't really say any of them have had any noticeable effect. I didn't know whether to laugh or cry when I was told that I was probably getting dependency headaches for the codeine I'd been prescribed and ought to stop taking those.

    I'm more or less used to living with them now, although I'm sure anyone who has had a really severe migraine will know that when one of those strikes they can be completely oppressive. I don't think they've gotten any better in terms of their impact, but I've become more determined not to let them stop me doing what I want to do, although there are definitely still some days when my head simply feels too heavy to get out of bed and go.

    For what it's worth, I think doing half an hour of cardio every day in the morning has helped me. I don't know if it's a mental thing, or if getting my heart rate up helps me to put it on the back foot, but it's one thing I've been able to hang on to and say that it does me some good. I know migraines affect everybody differently, and exercise won't be a particularly good option if you get severe nausea for instance, and some people will dread the idea of getting their pulse up with a thumping migraine, but I hope anyone else suffering with regular migraines is able to find something that works for them and helps to at least reassure them they can get through a day the way they want to.

    Oddly enough, I haven't been able to get my GP to agree that a scan would be useful. I've seen a neurologist as well, which wasn't worth the 6 month wait for a 15 minute chat and some topamax. I've tried a couple of other GPs when moving around for university and only got the same dismissive responses and attempts to put me back on treatments which haven't delivered anything but side-effects.

    • StevenRose
      StevenRose charleston

      Posted

      Hi Charleston.

      I am surprised you have been refused an MRI scan as this is useful to know if there is any underlying caused for your headaches.

      But I like you have tried many meds to deal with my headaches and in my experience and research codiene will agrevate the condition.  You dont mention Pregabalin, or Sumatriptan.  These are the drugs I use for my headaches and they work pretty well for me.  The sumatriptan comes is tablet or epipen injection form too.  The injection works pretty quickly to deal with the pain.

      I would keep nagging for an MRI scan, and suggest new drugs.

      Good luck Charleston, be good to hear how you get on.

    • StevenRose
      StevenRose charleston

      Posted

      I agree about expercise helping though!  It gives me a lift and takes my mind off my condition.  Also seeing people worse of than me, just puts my condtion into perspective!
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