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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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  • Luk4lotsmore
    Luk4lotsmore Becky-Louise

    Posted

    Hi Becky-Louise

    I'm on Nadolol for migranes it has worked a treat for me, not really had many since starting on them.

    Maybe ask your Dr if grass led to try that

    Good luck

  • Arizonatorress
    Arizonatorress Becky-Louise

    Posted

    I'm currently struggling with the same problem. It's been five months. I work 6 days a week I am a 22 year old female.

    I'm on amitryptaline, diazapam. I can't tell you how many pain killers I'm on. I'm so depressed I'm starting therapy soon. My whole life has been taken from me and with you, I feel like no one takes me seriously. This pain is very real.

    Did anything end up working for you? I have seen so many nuerologists doctors and other specialists who all prescribe something I know won't work and they say they can't help me

    • StevenRose
      StevenRose Arizonatorress

      Posted

      Hi,

      The drugs you are talking about are all generally quite good at preventing the pain, what you need is somthing to take the pain away once its started.  I take sumatriptan and for me it is the best,  Tablet or epipen injection, they both work well, although the injection works really quickly.

      It is depressing while they look for the best meds, I had to have steroids for a month once and they worked well too.

      Good luck and let us know how you get on,

      Take care

    • Arizonatorress
      Arizonatorress StevenRose

      Posted

      They had me on sumatriptan months ago. Didn't help sad the pain fluctuates but never goes away. Today is a horrible day. I can't do anything I couldn't go to work im so nauseas.

      At my best I'm at a 6 in pain. Today is like a 12 it's unbearable. I'm doing chiropractic work because my neck hurts so much.

      I had my wisdom teeth removed because I thought that was it but it wasn't. I get massaged once a week. It's the worst pain I've ever felt and I'm scared that no one can help me sad

    • StevenRose
      StevenRose Arizonatorress

      Posted

      ok if you are working 6 days a week and you havent had a holiday lately, maybe that would help, I am not suggesting its a cure, but it seems like you do need to get away from normal working life for a while.  You need to find a neurologist that specialises in headaches if you havent done already, they are more sympathetic to your condition.  I know in general drs can not be bothered with people who suffer from headaches as its not top priority for them,  I have exeperienced this and you do have to nag them to get anywhere.

      I am guessing you have had an MRI and they can do a special MRI that highlights certain areas of you brain.

      Keep in touch and let us know how you get on.

      Take care and best wishes

    • Arizonatorress
      Arizonatorress StevenRose

      Posted

      I did take a couple weeks off in the beginning when it started, but it didn't seem to help. Now it's kind of a cycle. I'm in pain when I'm home resting and I'm in pain at work I feel like I might as well be making money to pay for all these doctors you know.

      I did do an MRI with and without contrast and had a CT scan all cleared. I will look for a neurologist that specializes in headaches...I've only seen the ones I've been referred to and they all say it's stress, prescribe me meds that don't work, and send me on my way.

      It's so frustrating and I'm running out of patience sad

      Thanks for listening, it really does help to know I'm not the only one with this problem.

    • StevenRose
      StevenRose Arizonatorress

      Posted

      yes, I think most of us at some stage have been told its just stress, take these tablets and dont come back!  Try not to run out of patience, we are all with you as we are all in the same boat.  At least you can be sure of one thing, that because you have had the scans nothing sinister is going on.  If you can get the MRI with contrast this will be best and if that comes back clear it will put your mind at complete rest.  Of course you still have the problem of the headache and once you find as proper headache dr you will get the best help and treatment.

      I am guessing you are from the US and I know we are luck we here in UK have the NHS, but we do have to wait a while to see the specialist, unless we pay of course like you.

      The main thing is we are all here to support you and give you strength and know that we are thinking of you and trying to give you strength.

      Do keep in touch and let us know how you get on.  I am sure and confident that you will get the right treatment to give you back your life.

      Good luck, take care and best wishes

  • michaela12493
    michaela12493 Becky-Louise

    Posted

    Oh my gosh you poor thing. I get them for a week in every month. Severe. To have it continuously is just beyond. There are some really helpful replies on here and god bless all who suffer with this. It is so frustrating how we have to actually swear on the bible that we have these headaches as you feel like no one believes or cares!

     

  • iapoao
    iapoao Becky-Louise

    Posted

    It's truly therapeutic to know you're not alone in this. At this point I've exhausted the standard coping techniques so I'll get my hand on whatever can help forgot this misery even for 5 mins.

    I've had this issue since I was around 10, I'm 21 in August. I don't remember much, but i do remember being unable to "rest" because of these headaches. I always had to occupy myself to forget the pain. Since I live in culture of sweeping things under the carpet, no one ever took notice.

    I felt on my chin once and ruptured the skin, had to have it stitched back up. I wonder if I might have acquired a concussion then. Because every time I've searched this up, results of possible brain injury/damage have always popped up.

    I've gone to therapy, nada. Psychiatry, nada. Dx'ed with ADHD, took Adderall, Strattera, Vyvanse---with no avail. Hydroxyzine. Celexa. Even Xanax, which I had high hopes in!!!!!

    Took Acid Reflux meds, since I have GERD too. Not much help. Asthma meds, no much help either. Imagine the whole gamut pulled on you---Spiriva, Dymista, Albuterol Ventolin, Singulair, etc. all expensive drugs. All pulled on you, without much help. This is very soul crushing.

    Dr. Tells me I'm depressed. But I generally WANT to do things. When I read about depression, people complain that life is pointless. I feel that way only when this being sick all the time takes over me.

    I want to dance, keep at my writing---travel. But these headaches are killing me.

    I'm taking Aleve and Buspar and Pantoprazole and Ranitidine and they seem to help somewhat, although I still deal with crying spells and headaches and whatnot.

    If only I could get help with my sleep now.

    Sorry for the rambling. Just wanted to vent!

  • lisa74893
    lisa74893 Becky-Louise

    Posted

    Hey I totally feel your pain have u ever figured anything out I read your story I'm seriously jaw dropped I did everything you did same medicines 2 neurologist everything and I literally have a headache 24/7 every single day and it's been 2 years I'm going crazy it caused me to have panic attacks and I'm still going through it it's horrible any luck at anything

  • dot23324
    dot23324 Becky-Louise

    Posted

    I'm so sorry to hear about all of this pain.  My son was recently diagnosed after being misdiagnosed with Pseudo Tumor Cerebri to now chronic migraines.  His pain lasted from January 20 to June 15th.  Pet therapy stopped the headaches.    I also give him Migrelief (it has magnesium, B-2 and fever few).  I looked at the foods that constrict the blood vessels and cheese was a big one so he is off that as well.  He drinks distilled water 2 oz every 20 minutes to stay hydrated.  He drinks ginger and/or  peppermint tea for the nausea.   We are also starting neuro-biofeedback to work with the brain.  He is also on cyproheptadine.  We are doing a lot of praying.  We have found healing scriptures in the Bible and we recite them over him everyday.  

  • christal40762
    christal40762 Becky-Louise

    Posted

    Im 20 also and ive had migraines for a couple years now every single day!. I have been to SO many doctors to try and figure out whats going on and nothing ever seems to help. Its gotten to the point to where now i know what triggers my migraines. For instance when i wake up in the mornings i have an instant migraine, if its too hot outside or if i sit the wrong way i get a migraine i cant seem to do anything that doesnt trigger them. The only thing that seems to give me any kind of relief is excedrin migraine extra strength. Im about to go back to the doctor again to try and figure something out because i know that taking them everyday 2-3 times is extremely bad! I hope that all is well with you now if you were able to find out any information i would really love to know maybe i can find some relief for mine as well!
  • carol35057
    carol35057 Becky-Louise

    Posted

    As a migraine sufferer myself my heart goes out to you for having to deal with daily pain on this scale. In my case my migraine is caused by intolerance to both food and chemicals. My triggers can be apples, caffeine, coffee, wheat, dairy, tomatoes, eggs, perfumes and many others and I have to live with a rotation diet. Problem good are often the ones we live the best and therefore have the most! I suggest a wonderful book by Dr Jonathan Bostroff on Allergies & Food Intolerance

    He Is now retired as an Allergy Consultant in the Uk but discusses different treatments. I went for desensitization which changed my life. Sometimes we have to go down the alternative route for answers. Candida is often another underlying cause. Hope this info is of help to you and any other sufferers out there.

  • maria05379
    maria05379 Becky-Louise

    Posted

    Hi Becky-Louise.  I know how desperate you must feel as I have also suffered in the same way.  Today I don´t suffer at all.  First you are right to cut out caffeine, stop eating chocolate as sugar is not good for you and increases headaches.  You need to eat healthy and together with  this below, will help you.  Headaches have all kinds of reasons and its your body telling you something is wrong.  Dump all the pills the doctors are giving you. Topomax and all these pills are really bad and can only create new problems.  Start by taking 2 vitamin B2 (Riboflavin) tablets in the morning and 2 in the afternoon. Recommended by Head of neurology at Kensington and Chelsea Hospital, London who also suffered from migraines.  It will make your pee yellow but its an antioxident and is totally harmless.  It helps send blood to the head. Later you can reduce to maybe 2 a day.  Many migraines are because not enough blood reaches the head and this is what happens when you are stressed. It stiffens muscles and blood doesn't pass as easily.   Many times stress shows up a period AFTER you have been stressed, not at the time.  Make sure you are doing excersizes that loosen shoulders, neck and lower back.  Second very important, make sure that you are getting enough sun.  D3 comes from the sun and if you have too little your body crumbles, bones lose density and headaches come on. I thought I was dying. Horrible! This is what happened to me and i now have osteoporosis because it wasn't found early enough. You can take all the calcium you need but it wont help if you don't have enough D3 to process it.  So if you don't get sun (most students don't) take a squirt bottle (one squirt under the tongue) from Holland and Barrett. Millions of youngsters in the UK have dangerously low D3 deficiencies. Our rainy climate.  Lastly get your vitamin levels checked. See what is missing in your diet. Really good luck.

  • Pascale75
    Pascale75 Becky-Louise

    Posted

    I hope that by now, you are feeling a bit better specially after so many tests, medecines and medical exams. If not, you might be like me in terms of triggers so I would suggest to keep a food diary: avoid chinese food (monosodium glutamate), ketchup, some biscuits, wine, chocolate but more to the point any processed food, Rice works well for me. Eat very light and NOT LATE in the evening (at least 2.30h before going to bed). Help your body to detox with white or green tea (at least 3 or more cups a day) but also ginger (crush a little bit of ginger, add boiling water, a few drops of honey.. yum!). And sleep, sleep sleep to help your body recover. Please let us know how you feel
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