1. Community
  2. Brain and nerves
  3. Migraine

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

Posted , 296 users are following.

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

Prev Next
  • Tobamory
    Tobamory Becky-Louise

    Posted

    Ok so im back from the Nerologist in Leeds UK, i have botox in 2 weeks, as Becky has had. UI learned something today about rebound.

    Anymore than 6 50MG Imigran ( triptan ) a month can and does cause rebound.

    Anymore than 11 Days with Paracetomol Cause rebounds.

    Anymore than 7 to 8 days of codiene causes rebound.

    So if any of you are religious in the way you take paracetomol, Get up make a coffe pop 2 to 3 tablets and rince and reapet through the day, Stop now, Its prob causing them and will actually do nothing.

    But you all knew that already right ..

    Looking forward to Botox, as most people who have been on Methysurgide have gone onto it with good results, methysurgide as you all know was discontinued.

    Ill keep you posted.

    @Susan im going to try your methods also, Ive ordered probiotic Tablets as well as eveything other than Folic acid type thing. I,ll get that later

  • amandaz17
    amandaz17 Becky-Louise

    Posted

    Hey Becky,

    As I was reading your post I was actually scared because everything you have said I have experienced and continue too. I'm a fifteen year old and have continued to suffer from headaches for the past four years now. I've seen a neurologist for the past two years and they continue to not be able to wrap their heads around what is going on. They declared that I have three different types of headaches at once, a tension, migraine, and cluster. I completely understand your pain and stress about them not coming up with a solution. I've been to the ER twice due to being in such pain, I couldn't walk on my own, was nauseous and dizzy, and even lost vision. I've had multiple CTs and MRIs but they haven't found anything. Sometimes I wish something would show up so people wouldn't think I'm making it up or seeking attention. I'm sorry you are having trouble sleeping, it use to be the only thing to help subpar mine but now it doesn't. I've tried all the medicines that you have listened and continue to see no change. I am to young to use it but they have discovered something for your head that send electrons into your head and is suppose to help. I know it's been awhile since you have posted this blog but I didn't know if you would mind replying and letting me know if you have had any break throughs. 

    Best Wishes,

    Amanda 

    • Becky-Louise
      Becky-Louise amandaz17

      Posted

      Hi Amanda,

      Sorry for the late reply. I find it hard sometimes to keep up with this forum- I never imagined I would ever get this much response from people! The good thing is there is always someone to respond with their own stories or advice, if I can't.

      Unfortunately I'm pretty much the same as always.

      Seen my neurologist and being tried on rizatriptan. But nervous about it because I've always had really bad side affects off anti epileptic drugs. I'm never myself on them, and always feels worse.

      I'm also being sent for another MRI scan of the veins in my brain. The last one came back clear, but the Dr seems to think it's worth doing another rolleyes

      If neither show anything/ any change, then I'm being referred to a place in Liverpool. Not sure what she called it, be she sends a lot of people there that she's exhausted all ideas and medications on. So hopefully they can do something else for me rolleyes

      I'm trying acupuncture on Monday (this is through my local pain management clinic) song shall keep you posted on that.

      Had 2 courses of Botox with no change, so my neurologist has said not to bother anymore. But I think I might try the 3rd just in case.

      The only relief I've found is from Maxalt Melts. They don't take away the migraine but they take the edge off. Unfortunately though, these aren't designed for everyday use. They cause rebound headache and also contain aspartame. So when you have migraines everyday, all different levels of pain too, it's really hard to know when to take it. I also have to time it perfectly, just as I feel the migraine getting worse. If I don't, it's a waste of a wafer. You can only get 6 wafers at a time too!

      Hope your having more luck than me, keep my informed (even if it may take me ages to reply, I am interested in everyone's experiences!) All the best!

    • ziggeryzag
      ziggeryzag Becky-Louise

      Posted

      Don't worry about rizatriptan. Its not an epilepsy drug its just a different triptan ( like maxalt). X

    • Becky-Louise
      Becky-Louise ziggeryzag

      Posted

      Oh right aha, my neurologist told me it was an epilepsy one, even though she knows how I feel about them. Feel a little bit better about them now then smile
    • StevenRose
      StevenRose Becky-Louise

      Posted

      Hi Becky-Louise,

      Yes, the Maxalt you take is easy to use, but honestly as I keep saying on here, Sumatriptan epipen style injections, which you can get from your GP on prescription only is the gold standard treatment to abort the pain once it has started, then the neurologists have to come up with a treatment to prevent them happening.  Just for the record I take pregabalin and verapamil, and it works pretty well most of the time, so if anybody on here hasnt tried any of those combos, then just suggesting you ask.  Neither of the drugs are anti epilepsy treatments, I didnt get on with them either btw.

      Good luck with MRI scan and with treatment plan

    • Becky-Louise
      Becky-Louise ziggeryzag

      Posted

      Well don't I feel stupid -.-

      Completely got mixed up with what tablets I'm now on aha. Rizatriptan is in my Maxalt melts, I knew I recognised the name from somewhere.

      But the new tablets I'm taking are Zonisamide. These are the anti epileptic drugs. 

      Doh! 

    • ziggeryzag
      ziggeryzag Becky-Louise

      Posted

      Your not stupid! Your brave and amazing to have got so far with drs, hospitals tests etc. I couldn't have at your age! 
  • Tobamory
    Tobamory Becky-Louise

    Posted

    Just a small update from me, I didnt have my Botox but will do in the next 2 weeks, However  i did do what Susan mentioned. I got

    probiotic 4million strength

    Vit E 400 Strength

    Cod Liver Oil

    I also take L tyrosine and L trytophan

    Im now on day 4 of no Imigran, it could be a change in the weather but so far so good, I,ll keep you posted

    • susan43558
      susan43558 Tobamory

      Posted

      Praise the Lord! Oh my goodness! I'm so glad! Don't forget about the B12 liquid methylcobalamin and folate if you feel like you are still need a little boost in the energy department. And, just to warn you, the probiotic will give a person gas for a few weeks while the battle of the fittest bacteria happens in your gut... the gas goes away after the battle has been won. I wish more people would try vitamins, nature put them in fruits and vegitables for a good reason, and it wasn't for looks! 
    • rashid11851829
      rashid11851829 susan43558

      Posted

      Hi susan where did you get that liquid and u sed folate what does that mean is that any remidies or what???
    • susan43558
      susan43558 rashid11851829

      Posted

      I just want to remind everyone that I am not a doctor. I just want people to know what worked for me. Always talk to a doctor first. I got the liquid b12 methylcobalamin at a vitamin shop, The Vitamin Shoppe, it's like GNC, but I live nearer to it. I don't know if they have stores everywhere. I'd call around. It's about 12 bucks a bottle, but it lasts long and is totally worth it, to me! Folate is the form of folic acid that is easier for a body to use. Don't substitute for folic acid, the body has to work hard to convert folic acid into folate. Also at the vitamin shop. About 6 bucks. And, there are risks of overdosing on the fat soluable vitamins, so I take those until I feel better, then I go light on them, then go back to daily if I satrt to feel "off" again. Fat soluable vitamins are A, D, E and K. Vitamin E, if taken daily will burst your cappilaries in your eye and turn your eye red, so I only take it a few times a week. ALL vitamins interact with medications, so talk to a doctor about if it is safe for you or not. A doctor might tell you, though, not to take vitamins for this reason or that, because a doctor is not tecnically allowed to prescribe vitamins, so just ask about if it is safe or not, not if the doctor recommends, they can't, I don't think. Just like I can't recommend anything, only tell you what worked for me and warn you to check with a professional.
    • maddie64418
      maddie64418 susan43558

      Posted

      Hi Susan,

      I'm 22 and judging by Becky-Louise's posts I think we have exactly the same problem. I've had what I believe are constant migraines and dizzines for the past 7 months, 24/7. I've tried amitriptyline (10mg) and dosulepin (25mg), that didn't work. My CT scan was clear and so is my vision and hearing. I've seen two neurologists - one diagnosed me with tension-type headaches and the other one said I had chronic migraine with aura.

      I've been reading your posts and you seem to be doing really well on the vitamins and I was just wondering what you think I should try? I'm not taking any meds at the moment, just seeing a chiropractor which has not helped at all.

      Any advice would be much appreciated as I am pretty desperate.

      Thank you very much

    • StevenRose
      StevenRose maddie64418

      Posted

      Hi Maddie,

      I see a specialist headache neurologist in London and Amitriptyline will only make it worse, he said and the dosulpin if you are not on the correct dossage they wont work either. The CT scan is not good enough to look at your brain properly only a MRI, which is so much safer to have anyway, can check your brain properly.

      Blood tests will reveal if you are deficient in anything.

      Good luck

  • dont_rely_on_dr
    dont_rely_on_dr Becky-Louise

    Posted

    hi becky

           just to let you know that my 14 yr old daughter has been experiencing very similair  symptoms and had the same response from drs

    they have just prescribed pizotifen (one of the poss side effects is headaches

    Can you believe it

    • Tobamory
      Tobamory dont_rely_on_dr

      Posted

      that drug made me so Moody, i found it very hard to get out of bed in a morning, i also ate lots..... Prob the worst one ive had....
Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.