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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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  • StevenRose
    StevenRose Becky-Louise

    Posted

    Hi Becky-Louise,

    I have only recently registered with patient.info so have only now seen your post.

    Have you got anywhere yet with resolving your headache issue?

    I too was in your position until they found a medicine to help me and I would still be in that position if I didn't take my meds everyday.

    Yes, I agree you have to nag the drs to get anywhere and this is frustrating and exhausting, and the whole process of being in so much pain and trying to get help is depressing to say the least.

    I am using Sumatriptan (Imigran) injections to abort the attacks and a combination of Pregabalin and Verapamil.  This works for me when most other meds haven't.

    Yes I know you tried Imigran tablets, but trust me the injections are the best.  They are like an epipen that diabetics use.

    Beck-Louise I know how bad these headaches are, so can sympathise with you entirely!

    Good luck, I am always here for support and hope you get somewhere soon.

     

  • robert45785
    robert45785 Becky-Louise

    Posted

    hi, had headaches all my life. I'm 54 and a doctor and nothing seems to really help.

    I have an impression that since starting amlodipine for hypertension the frequency reduced.  I've been on and off a few times but recently I restarted out of desperation and got a headache for 3 days and then noticed a gradual modest reduction in frequency. It is a prescription drug and should only be used under medical supervsion and reduces blood pressure and ironically headache is a side effect.

    regards

    ​robert

  • JessieS09
    JessieS09 Becky-Louise

    Posted

    Hi Becky-Louise,

    I have been suffering from the same issue as you for the last 6 years (I'm 19, turning 20 soon). None of my doctors or neurologists seem to take me very seriously and I can understand why you are feeling frustrated. I've had the whole 'it's not a tumour, so it's probably nothing serious'! It took my doctor almost 2 years to actually send me to a neurologist in Oxford (when I was 15). It was during this visit that the neurologist was doing a few tests and asked me 'So do you have any exams soon?'. I replied back with 'Um, yes I have a few exams in 3 months time'. For some reason this automatical concluded to them that my migraines were due to stress! But that didn't exactly explain my 2 years of no exams previously! At this point I wasn't stressed but just worried about what was wrong with me. Even now 4 years after that I'm still not much closer to the solution of my 24/7 migraines issue. I think that by now I've lost most of my faith in the medical care in the UK.

    If you have found any relief to this issue, that would be a great help for me smile

    Jessie

    • StevenRose
      StevenRose JessieS09

      Posted

      Hi Jessie,

      You have to nag and nag drs to get anywhere on NHS.

      If you can get a referal to the headache specialist at the national neurological hospital in London, you will get on better I assure you!

      Good Luck Jessie and if you can get sumatriptan injections (like a diabetics epipen) this is the gold standard in treating your headaches, but of course you need to find a med that actually prevents them.  This can be trial and error unfortunatley as I found out with mine. But there are many to choose from.

      Pain killers are as you say useless and end up making things worse.

      This site is here for your support, as someone will always respond to you.

      Take care

    • JessieS09
      JessieS09 StevenRose

      Posted

      Thanks for responding!

      I'll see if I can get the referral to the London specialist. 

      I've been to a range of neurologists but not with much success. I've had CAT and MRI scans done but nothing abnormal has ever been found. I'm hoping I'll be able to find something that reduces the pain soon as I hopefully start university in September and don't want the migraines to disrupt my education more than it already has. 

      I can't believe that I didn't discover this website before. 

      Thank you once again xxx

    • StevenRose
      StevenRose JessieS09

      Posted

      Seriously jessie, ask your GP for sumatriptan injections, he will show how to use them, they are really easy and will get rid of the migraine in about 10 minutes.  You will need to rest for about 30minutes after though as they tend to make drowsy.  Of course for some reason they may not be suitable to you, but unlikely. 

      The main thing is that your brain scans are completely normal, so at least you can rest easy on that point.

      But dont give up nagging the drs to get to the best treatment for you, sometimes they are reluctant as some of the meds, eg sumatriptan injections, but you are entitled to them.  Studying is not much fun at the best of times, but with a migraine, its stupid!

      Again, good luck and always here for support

  • StevenRose
    StevenRose Becky-Louise

    Posted

    The problem is we can all give our own experience of these crippling headaches and other symptoms, and the medicines we use to deal with them, but everybody is different, everybody reacts differently to the various meds available to treat these conditions, but the best is to get a proper diagnosis from a really good neurologist and under his or her guidance find the best medicine for you, whatever that might be.

    Of course support and understanding for sure, is in plentiful supply here for anybody that asks for it

  • anna50679
    anna50679 Becky-Louise

    Posted

    Hi, have you tried Tension balm by Dermamed? I used to have 3-4 days in a raw migraines, now they are gone. I used this balm with Migracell Nutrition capsules. You can buy them as a kit - _____

    Patient Moderator Note: I have removed an URL (a link) from this reply as it was unsuitable for inclusion within these forums. If any user is interested in this removed information they should contact the author via the Private Messaging system requesting such. Thank you for your cooperation.

    patient.info/forums/discuss/adding-links-to-posts-257271

    patient.info/forums/discuss/private-messages-226361

  • emily58781
    emily58781 Becky-Louise

    Posted

    Hi Becky

    Im 16 and have had the same problem for almost 2 years. Ive also tried topamax and many other prescriptions that have not worked. My mom also gets migraines but there only 2 times a month around her period. She takes relpax and it works for her although it has its side affects it has worked wonders. I tried this and it didnt even touch my migrains. My neurologist has now put me on the vitiman B2 that is suppose to help with migraines after about 2 or 3 months. Ive been taking it for about a month now and nothing has happened or changed about my migraines. Since you are over 18 you would be able to try botox. It is suppose to work really well. You just get it injected to you in the surrounding areas of your migraine. They do once a month. Since I am only 16 I do not have the chance to try it yet. Ive also heard they could do a procedure with your nerves in the back of your neck and untwist them somehow. After I take the B2 for 3 months and if it doesnt work then I have pretty much run out of options of medications. Im tired of living with a migraine EVERY single day. 

    • StevenRose
      StevenRose emily58781

      Posted

      Emily, trust me there are lots of migrain meds to control the severity and length of am attack, I know as I have been through a long list.

      What I also know after studying this for quite a while now is, you need to have a specialist in this field to help you the best way they can. I go to the national neurological hospital in london and many people far and wide get refered there.

      I also have discovered that the best medicine whatever type of migraine you have, to halt an attack is sumatriptan, or the brand name is called Imigran, not the tablets you can buy at the chemist, but prescribed epipen style injections and they work with in a few minutes!

      Then the specialist has to work out what treatment suits you to control these aweful migraines.  Btw topamax did nothing for me either!

      Dont let the drs fob you off, keep nagging them for answers, the right treatment for you is available, they just have to find it!

      There are operations like you say that they can do, but they are the absolute last resort, before that I am sure they will find the right meds.

      Oh and they should have given you a brain scan by now too.

      I have to have injections all over my head every so often to control things and I dont think you are too young for these as they are not botox.

      Good luck Emily, always here for support

    • emily58781
      emily58781 StevenRose

      Posted

      I actually have had a CT scan and everything was normal. I have tried pretty much every medicine. My neurologist said that after this there is basically no more options and then when I turn 18 I could try botox. I dont understand whats causing these migraines. I dont want to live with this anymore. I dont know if an acupuncture appt would help or if I need to get like a food allergie test but I dont want this to be a burden on my life anymore. I have loss of sleep even when I take melatonin and have had many absences from school due to these migraines. 
    • duvet
      duvet emily58781

      Posted

      Emily

      You sound like you are at the end of your tether.

      Take some deep breaths and exhale through your mouth loudly. With the three longest fingers of your dominant hand start tapping on your thigh or wherever you can reach comfortably at a rate slightly faster than your heart beat.

      Say out loud or to yourself: I am safe. I am loved. This b****d headache is at level 1-10. It is making me feel ..... 

      Keep repeating until you can slow the tapping rate and your pulse down. Its called emotional freedom technique and it does work.

      Then believe that 1. There is a solution out there for your headaches. And that 2. You can manage to go on until you find what works for you.

      Anything that lowers your stress level will help, including acupuncture, massage, exercise, yoga, meditation. I assume you have a smart phone or tablet - there are lots of free apps out there to guide meditation, hypnosis and relaxing sounds. Try lots and do not despair.

      We are all here for each other.

      Our journeys and solutions will differ but our goal is the same.

      Peace and a pain free life 

      Keep posting. I want to know you are OK.

      Helen xxx

    • ziggeryzag
      ziggeryzag duvet

      Posted

      Wow you sound so positive... Need a bit of that right now sad    had a week of pain but now the pain has lessened but I'm starting to be anxious and depressed. 
    • duvet
      duvet ziggeryzag

      Posted

      I have my good and bad days! Lived with my constant headaches for 11 years next week after a nasty bout of viral encephalitis.

      Have had to give up work at 48, also due to chronic back pain. I've run out of my neurologists meds to try - botox just helped a bit. 

      My neurosurgeon cannot do any more ops on my spine without risking I bleed out on the table.

      Trying the supplements suggested here. B2 and B12 with magnesium seem to help but I'm still in bed all day at least one day a week.

      Just got to stay positive. I'm lucky I have great friends, two dogs and a fan husband. Life is still good.

      Xxx

    • StevenRose
      StevenRose emily58781

      Posted

      Hi Emily,

      I am sorry your life is so aweful but try to hang in there and believe that a suitable treatment WILL be found, its tough I know, but try, I know you can do it!

      The CT scan you had would not be accurate enough to tell them enough about your brain, you should try and push for an MRI scan which is the best.

      Would you mind listing the meds you have tried so far and even though your neurologist may say that no more is available, I can see if you tried any that I have had.  Did you ask about sumatriptan epipen injections?  Honestly they are the gold standard to deal with an attack.

      Btw not all neurologist are the same, like in everything some are good, some are not so good.

      Accupunture is good to try as is anything that relaxes and de stresses you.  Indian head massage is wonderful and soothing. 

      Good luck Emily and let me know what you tried if you can please as the neurologist may have missed some.

       

    • Becky-Louise
      Becky-Louise emily58781

      Posted

      Hi Emily,

      God, I could not have a dealt with migraines at 16! It's just the worst possible time to have them. I honestly feel your pain, and frustration about all of it.

      Topamax was the worst thing I've ever tried! It was so awful, I really wasn't myself on any of the medications, but that made me like a zombie!

      I've already had to courses of Botox and felt no change what so ever sad spoke to my neurologist yesterday and she's basically said it should have worked by now, and not to bother anymore rolleyes

      I'm trying acupuncture on Monday so I shall keep you posted with how that goes, might be something to consider?

      Definitely push for an MRI- a normal one and then there's another which looks even closer at the veins and stuff within your brain.

      Another thing would maybe be a lumbar puncture to test for intercranial hypertension. But I warn you- this hurts! But if it shows something at the end of it, then it was all worth it.

      Definitely don't let them fob you off and stop trying medicines. I was told 3 months ago I'd exhausted my options, yet yesterday she's trying me on rizatriptan, another anti epileptic drug. Fingers crossed!

      If these don't work, then I'm being referred to a place in Liverpool to see if they can do anything for me.

      Keep pushing until they do literally everything they can, and if they don't, ask to see a different doctor!

      All the best Emily, keep us all posted!

    • amber99286
      amber99286 emily58781

      Posted

      Hi Emily

      How have you been? Please let us know if things have got any better?

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