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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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  • caralleen22164
    caralleen22164 Becky-Louise

    Posted

    Hi Becky-Louise, How are you feeling these days?  I just read the ongoing conversation you began 8 months ago, and I'm so hopeful you're feeling better.  My heart breaks as I read everyone's stories, and I'm also comforted knowing I'm not alone!  I'm in my 40s and I've had chronic daily headaches and monthly migraines for 18 years. They started when I was in my last year of college, all of a sudden.  I have tried everything that everyone has mentioned.  Nothing worked for me either.  Here's what I've learned in my 20 year battle.  First, I stopped prescriptions because everything just made me sicker with scary side effects.  I admit taking daily OTC meds isnt ideal, but at least now, I don't suffer sedation, lethargy, dizziness, weight gain and depression, and a host of other side effects.  I would have endured it if they worked but none of the meds ever worked.  I was on a host of antidepressants, anti epileptics, beta blockers, trip tans, you name it.  Because I'm off all that stuff, I can exercise a little and generally feel much better.   Secondly, I see a Chinese holistic doctor- she is licensed as an acupuncturist in the US, and she has been a phenomenal resource for changing my diet (anti-allergen, no wheat, dairy or sugar), tailoring a program of supplements and vitamins for my specific needs, and providing a tremendous amount of emotional support.  I hope you can find someone like that.  My experience has shown me you rarely find a doctor of any specialty including a GP who will look at you holistically.  Thirdly, I have recently decided to go ultra clean with my diet- stop all processed food, not just be gluten free, but also corn free, soy free and nut free.  It's insane to be this disciplines, but I can't 
  • carolanne77340
    carolanne77340 Becky-Louise

    Posted

    I too suffer daily severe headaches for which I take very strong analgesics with little effect. I have seen various drs & been diagnosed with everything from Migraine/trigmenial neuralgia/cluster headaches/sinusitus/allergies/stress/psychosomatic etc..I have tried many different medications that have not worked or I have been unable to tolerate. I am now thoroughly depressed & have no motivation to seek further help as "headaches" do not seem to illicit any empathy. I am currently off work (again) & fear losing my job. It is of some comfort to discover there are others like me & suffer for months, not a couple of days like the majority of migraine suffers. Mine started in my stomach as a child then L side of head during teens & since.  I am addicted to dihydrocodeine tablets & take double the dose now every 3hrs. My current "severe" episode has been for 2wks, however, my headaches are chronic, every day occurences, In fact, I do not know what it is like to be without a headache.....
    • Tobamory
      Tobamory carolanne77340

      Posted

      So i presume youve tried triptans to no effect ? Has the GP tried to ween you off codiene as you know this is one of the greatest causes of rebound headache, the combination of chronic Daily like i myself suffer from and a rebound cant be much fun sad. Also when you say doctors i presume you mean Nero surgeons not GPs. Its a Pity methysurgide isnt around anymore, this was an amazing drug, as i was in the hole your in once. carol do you wakeh them ? ie foggy head. I tested 5HTP 3 on a night and this cleared the fog on some occasions, i feel these morning Foggyness is a main contributer to mine. funnily enough if i drink 2 or 3 tins of lager i wake with less of a headache than normal, so either its dehydration or sxomething in the alchohol thats helping
    • carolanne77340
      carolanne77340 Tobamory

      Posted

      I am also taking citalopram 30mgs & have tried 5HTP supplements in the past. I have been on various codeine mix tablets since a teenager & an now approaching 50. I have never even been offered a blood test to check my liver etc... never mind a reducing regime. Having said that, I am afraid to ask, just incase the meds are stopped. I have only seen one neurologist who arranged an MRI which showed nothing so the advice was "stick to the analgesics" it's probably psychosomatic sad I do wake up "foggy" & the pain hits within about 5mins of being fully awake.
    • Tobamory
      Tobamory carolanne77340

      Posted

      Yeah yours are like mine, I getup and within 10 mins I can feel the ache coming, its very rare I wake clear,

      Do you find if you have a crap night or like me if I'm on business and my body clocks screwed i seem to get around the ache, last night the dog woke me at 2am and I never really had a good sleep but today I didn't need any meds maybe I'm,not ment to sleep...bah

    • caralleen22164
      caralleen22164 carolanne77340

      Posted

      Hi, I'm in the US and it sounds like we have similar stories.  I can't believe there are other people out there like me.  I'm in my 40s and have suffered terrible daily headaches since I was 25.  I've been on daily analgesics nearly 20 years, too, mostly Excedrin.  Always something with caffeine in it.  I know I'm suffering rebound headaches but what can you do...you have to survive.  I've seen 5 different neurologists, been tested for seems like everything, and tried every medication - triptans, beta blockers, seizure meds.  I completely sympathize with your plight.  Hang in there.  You're not alone!  Lately I've decided to radically change my diet and take out wheat, sugar and dairy.  It's starting to help a little.  Best of luck to you and the others responding.  
    • carolanne77340
      carolanne77340 caralleen22164

      Posted

      Yes, it is somewhat a comfort to discover & talk with others who have similar experiences. I have also tried a bespoke mouthguard (almost £100) as someone mentioned in the thread I think, & many other things & despair of trying anything with success. My usual coping mechanism is to "grin & bear it", even though the grin hurts because I fear being let down again by another treatment not working. This leads to depression & more pain. I was px Longtec 10mgs mod release bd on top of my dihydrocodeine yesterday & it has reduced the pain enough for me to engage on here. I realise this is temporary relief & if I continue taking them, it will add to my addiction. I am Desperate! I have had to use holiday leave from work , because I work as a nurse in the NHS & it's 3 strikes & your're out. I had made an agreement not to go sick within a 12mth period..Stupid, considering anything could haapen besides migraines. They are getting rid of more & more nurses & have stopped employing externally for years. BTW, the wheat/dairy thing does work a bit,  if you can stick with it. However, do you find that you actually crave the things that make it worse??
    • caralleen22164
      caralleen22164 carolanne77340

      Posted

      Oh gosh, I'm sorry for your struggle to work.  I'm in the medical field too but I quite working 3 years ago- it was a huge family decision, but it WAS a daily challenge to battle the headaches and work.  In my 20s and 30s I was constantly missing work, decreasing my hours, changing jobs, or quitting for 6 to 12 months at a time because the head pain was consuming.  As far as the diet goes, yes, I do find I crave the things I'm eliminating- my acupuncturist says the cravings will stop and she was right.  I'm beginning to realize that sugar is my worst enemy- and it's in the wheat and dairy.  I keep slipping back and eating some gluten free sweets, or having a small piece of cheese and then feel crummy and lethargic mad a slightly stronger headache the next day.  I really believe I'm going cold turkey off sugar today and I'll feel better.  It's not a complete cure by any means, but this new book I'm reading - Total Recovery by Dr. Gary Kaplan- says that eliminating these allergenic foods can allow the inflammation in our intestines to subside and our gut begin to heal.  This book is fascinating new approach to looking at chronic pain,
    • Tobamory
      Tobamory carolanne77340

      Posted

      Hehe, i once did the cambridge diet, and after a week i would have given anything to even suck on a piece of chicken LOL... it really puts food to perpective. Anyway im due to start a German based drug that is a calcium blocker, that and Botox is what im onto now. im lucky to work from home 80% of the time, and what i also find is, if im manicly busy i tend to not get them....

      I found some old Amytriptalyne in the airing cupboard and ive been taking 10MG a night and my heads a lot clearer, However i dont like thr drug as it zombyfies you if increased, No wonder its an anti depressent it doesnt actually lift you it make you like something from the walking dead.

      Carol if you take a triptan like Imigran does it shift ya hedache ?

    • Tobamory
      Tobamory caralleen22164

      Posted

      your same as me, i started about 24 25, im now 43. 12 Imigran a month for ever, tried most if not all preventatives, Only Methysurgide works, which  was discontinued, but i did hear california can get it....maybe privately made.

      Some ive tried

      Toparimate .... Made my Pop flat and pins and Needles

      Betablockers... Made my heartrate look good on the treadmill

      Amatriptyline..... Rubbish made me a moody coot

      Pizotifen... Moody Coot again and i ate the fridge

      Gabapentin... Nothing at all

      Methysurgide... Best drug ever.

       

    • caralleen22164
      caralleen22164 Tobamory

      Posted

      Ha, I'm laughing at your ate the fridge comment, yes I've had several antidepressants make me do that!  It's been about 9 years since I was prescribed Sansert (methysurgide).  I had awful side effects- severe lethargy, leg sweeping, scary stuff.  Didn't really help me.  I don't know if they prescribe it anymore.  I don't think it's banned, per se, I think docs just aren't prescribing it
    • Tobamory
      Tobamory caralleen22164

      Posted

      they stopped making it as far as my Nerologist said, They actually tried to import a Pallet of it to the UK, and it was out of date....You say severe lethargy, pizotifen made it so bad for me i was like welded the bed on a morning awful. methysurgide wasnt a great drug with nasty side effects, based on LSD, my doc said if you take 10 you see Elephants.. In Fact if u google it you get onto some dodgy forums where Ravers are talking about it as a way to trip LOL sad eh.....
    • carolanne77340
      carolanne77340 caralleen22164

      Posted

      Thanks for the advice. May read that book myself. I have had rather a low day today. Still in pain,low & feeling a bit panicky about having to return to work tomorrow sad
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