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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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  • rob95782
    rob95782

    Posted

    Hi - Just so you have someone reply to you smile. Have a read of my replay to the post from they guy asking about migraine triggered by cheese.
  • Becky-Louise
    Becky-Louise

    Posted

    Thanks for the reply.

    The problem with your answer to the other post is, my migraines aren't triggered by anything, their just constantly there. Constantly there for 9 months. No matter what tablets I take, whether over the counter or prescribed, I can't get rid of the migraine it's self. I don't get auras before a migraine, I've had no 'warning signs' that a migraine is going to start, ever. Also no matter what tablets I take for the pain, their is nothing that works. In hospital I've been given paracetamol; co codamol, tramadol, diclifenac, combinations of them all, right up to morphine with no change to the migraine at all.

    I will give what you say a try but at the moment I'm just sure I'm going to be like this the rest of my life. Nothing works.

    Before January I've never had a migraine in my life, can't understand why it hasn't gone away in 9 months.

    Thank you for replying anyway, will see if it works

    • kathryn03194
      kathryn03194 Becky-Louise

      Posted

      I had migraine daily for a long time and then figured out that it was food additives- specifically monosodium glutamate and all of the things that it hides under (over 40!). www.truthinlabeling.org was my life saver. Then I discovered other triggers too. It feels like my diet is collapsing on me. I came here because I have had migraines for 6 consecutive days and am trying to figure out what is up now. 

      So far, besides the free glutamic acid (MSG), my triggers are: overripe tomatoes, mushrooms, aged cheeses (all have glutamic acid), citrus fruit, and berries. 

      It is hard, but if you eat organic for a couple weeks and avoid cheese, tomatoes and mushrooms, you might see a difference? 

      Otherwise, look at this article. Offers no help, but it may match what is going on for you better than the migraine theory:

      https://americanmigrainefoundation.org/understanding-migraine/what-is-this-everyday-headache-all-about/

       

  • rob95782
    rob95782

    Posted

    Okay this sounds like something different. It may help to get some sleep. If you have decided absolutely nothing works then one could consider a synthetic Melatonin 3mg which one may need to import from Canada as it is over the counter in US and Canada but not so much in other countries. Dissolves on the tongue and taken before bedtime. Not really for repeated use - but results are impressive. I only take infrequently these days when I just can't sleep.

    Aside from that it is possible that it is a form of anxiety rather than stress per se, and if that is the case 50mg of zoloft I would have thought would lift one out of a tension headache "cloud".

    If you drink a lot of coffee and used to smoke a lot historically, this could be another angle, and if a form of self medication (previously), might suggest one returns to drinking coffee and move back onto a continuous intake of nicotine via a lozenge.

    Sleep and seronotin levels seems to be a factor here

    Please just treat this as just extra information from me and good luck in finding a resolution.

    rgds

    Rob

    • elliot_72420
      elliot_72420 rob95782

      Posted

      What a stupid thing to say! Get back on coffee and nicotine and take an anti depressant that has serious withdrawal effect such as headaches. You could pass for a doctor
  • Becky-Louise
    Becky-Louise

    Posted

    Yeah I've been trying to see my doctor to get something to help me sleep, as I'm constantly waking during the night now (never used to have trouble sleeping). My problem is that in a full time student and I work weekends as well, so I don't want to be knocked out by medication so that the next day I'm still so sleepy I can't function. It's a very difficult situation.

    I was never stressed at the start, wasn't until the last few months where it's been getting worse and doctors have been useless, that I've been up the wall with stress.

    Thank you anyway for taking the time to reply, I do appreciate your information and shall try what you've suggested.

  • rob95782
    rob95782

    Posted

    Yes I often think the same about doctors. It really does not sound like migraines to me

    ..these are often linked to a higher than normal level of an enzyme called homocysteine either for genetic reasons or affected by a deficiency in certain B vitamins.

    ...... but perhaps you are in that type of situation where if you lose a few hours sleep, it takes a really long time to recover. So maybe find a way to sleep better without being knocked out by medication.

    So lets have a think..assuming you cannot change your lifestyle, studying, deadline, working weekends etc..

    Consider

    Increase melatonin levels towards night time to give you a more effective and refreshing sleep.

    Glass of milk at bedtime and banana (Milk contains melatonin).

    Concentrated "tart" cherry juice (high in melatonin)..

    magnesium from the other post (as a muscle relaxant).

    some night time mersyndol handy or one of the old style "drowsy" antihistamines.

    rgds

  • Becky-Louise
    Becky-Louise

    Posted

    Sounds worth trying, shall start that tonight. I'm dying for a decent nights sleep!

    And no I wasn't sure if they are migraines, but nothing is coming up on any of the scans I've had done. I guess I should be really glad for that, but at the same time, I was hoping I'd find out what it is. Still waiting on MRI results to see if there is a problem with my veins etc in my head though. So fingers crossed I get some answers.

    Thank you for your help

    • sharla410
      sharla410 Becky-Louise

      Posted

      I don't know if you're still reading messages here, but I'm having similar issues to you.  Instead of an MRI, try to get an MRA, or at least an MRI or CT with contrast.  Regular MRI's don't always show everything.  You may want to also consider getting a neck scan (with contrast).  Sometimes strange headaches can be referred pain from somewhere else in the body,but particularly the neck....Hope you feel better!

    • jason00302
      jason00302 sharla410

      Posted

       I think your right on the money here.

      Headaches can come from elsewhere and we all know how much better we feel when muscles in the neck and upper shoulders feel when they get some massage or heat on them.

      Maybe the nerves are getting tight and creating some tension from the muscles.

  • duvet
    duvet

    Posted

    Hi, just so you know, you are not alone! I'm a newbie to forums so bear with me. I've had regular major migraines for 10 yrs post viral encephalitis. For me, major means being in bed for over 8 hours in sig pain, nausea and photophobia.

    Since approaching menopause they have ramped up to a daily all day headache for over 2 years and last month I spent 9 days in bed all day!

    I have tried pretty well all the prescription triptans and prophylactics: amitriptyline, verapamil, gabapentin, pregabalin, propranolol and topimarate. All to no avail for me but you may find one that suits.

    I'm seeing a neurologist now who specialises in headaches and after 6 months cold turkey with zero analgesics or triptans to rule out medication overuse headache, I'm now trying Botox.

    Hang in there. Try some of the sleep apps and cranial sacral therapy xxx

    • A303101
      A303101 duvet

      Posted

      That's my plan botox. After trying more meds. Than get ins. To pay for it. And charo once wk and carneal sacral massage therapy, ,,, doc says he been doing it for 15 yrs and works great botox that is. ..
    • mandy54103
      mandy54103 duvet

      Posted

      Duvet,

      I am new on here. I to had Viral Encephalitis when I was 10, twice. I had 7 seizures and almost died.  I was in the hospital for the first time for 2 weeks, home for almost a week, when I had to go back bc I was having headaches on the other side of my head. The viral Encephalitis had moved to the other side of my brain! I was in the hospital for another few weeks, then home for a LONG recovery! 

      I just turned 32 and I have to say that I have ALWAYS had migraines! However,  lately,  I have had a non stop migraine for over 2 months that NO  medicine that normally helps, will even begin to touch. I have taken all the meds you listed, except for Botox, over the years. I have recently taken topomax and Fioricet, with negative results,  as well as toradol and Steroid injections.

      I Had An MRI that did show I have Encephalomalacia,  which is to be honest,  dead brain, which is probably due to the Encephalitis. 

      I have had numerous other symptoms,  to many to mention and I really think it's something more. I had another MRI WITH CONTRAST and still waiting on results.  I'm scared as hell. I feel alone,  like no one believes me. Did you ever find out what was causing your issues? Did you have an MRI and did it show Encephalomalacia (which everyone, my family,  is brushing off)??? Just curious....Thanks smile

    • betsy70690
      betsy70690 duvet

      Posted

      I too am a migraines, most of 30 years. Tried all of the above and Botox. Nothing. Still use

      Sumatriptan and Fioricet, almost daily. Rebound?, I just want to return to a quality of life. Sleep well, use magnesium and melatonin for that. Everyone has different suggestions, allergies, sinus problems, food allergies, which have been eliminated. But nothing so far has worked.

  • morganabr
    morganabr

    Posted

    Hello, I seem to be in almost the exact same situation as you. I've had the headache for less time but doctors told me the exact same things and all tests came back normal.

    My doctor just happened to notice I have an overbite and said I might have something called TMJ-disfunction. I talked to my physio therapist and she worked on my jaw, after my treatment my head pain was worse than its ever been and other pain started for about 10 hrs or so. I woke up the next day and my headache was noticeably better. I also purchased a night guard from London Drugs as the disfunction can be caused by clenching teeth at night. It's now been 3 days since my treatment and I am going for another today. I was annoyed when my doctor said this might be my problem as I didnt think something like my jaw could cause that pain. But it did help. Your TMJ is located right in front of your ear on your cheek, if you push on it when you open your jaw and it hurts, that is what I feel.

    I read your post before I found this out and felt the need to share what I discovered because I was crying every day in frustration, I feel for you!

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