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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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  • dot23324
    dot23324 Becky-Louise

    Posted

    Hi Becky, my son is 9 and had had a migraine since January 20th. At first doctors gave him a spinal tap and diagnosed him with pseudo tumor cerebri.  So the topomax and propranolol did not work.  He is on wheatgrass; migrelief and cyproheptadine and melatonin 10mg.  
  • honey72
    honey72 Becky-Louise

    Posted

    Hi Becky maybe you should try no medicine at all and detox your body....with water... for seven days...drink sleepy time tea....start over....even trying simple Tylenol....i too suffer from migraines...the worst or longest is usually 3 days....at a time....i even switch to generic brand excedrin.....from target.. up&up...that works great
  • kt8e
    kt8e Becky-Louise

    Posted

    I know this was posted some time ago now but I am going through the same experience. I am 16 and have been experiencing constant headaches for the last year or so now. The pain seems to be getting worse, I wake up and go to sleep with a headache. I have forgotten what it is like not to have a headache.

    I have tried so many ways of getting relief but none have worked. I am under a neurologist who has prescribed me with Topiramate but it is not giving me any relief. A few weeks ago I had an occipital nerve block which actually made the pain worse than better and at this point I just don't know what to do any more as I feel like the doctor's don't take the condition seriously- I mean they haven't even sent me for an MRI so even though I have been diagnosed with Chronic Migraine I have an underlying feeling and dread that it could be something worse. I keep telling my parents I need an MRI but it will be months before I get one anyways. If it shows up clear, which hopefully it just leaves me with the question, will I ever fins a cure? Am I going to live the rest of my life waking up everyday with a chronic headache, unable to concentrate in my studies and go by my day to day activities normally? 

    The worst thing is that it is not just me suffering, I have to watch my family suffer with me, as even though they do not understand the pain; pain is subjective, I know that, I can see they worry for me and want to help but cannot and this upsets them very much. Also, having a headache 24/7 is hard to explain to my friends, it's not a normality and so again all they can do is worry which only upsets me even more.

    At first I dealt with it really well, I had a very positive mindset, telling myself that soon I would find something that would make the pain go away. But it' been so long now and the pain is so constand and intense that it's affecting me psychologically and sometimes all I can do is go into a quiet room and cry to myself. I try and stay strong when I'm around my friends and family, but honestly I don't know what to do anymore? Any advice? 

    Katie

    • StevenRose
      StevenRose kt8e

      Posted

      Hi katie,

      I am sorry to hear you are going through so much pain, this is the place to talk to people who have gone through or are going through the same as you, so you can be sure to hear from understanding and sympathetic people.

      Having a MRI scan is as you know the first step to getting a diagnosis abd then proper tretament and relief.

      Just as a suggestion to relieve your pain have you tried Sumatriptan or another name is Imigran, if you get the full dose of 100mg tablets, or even an epipen injection, which works very quickly, it can transform your life.

      But of course I know you need some medicine to prevent them in the first place.  Topirimate is a terrible drug as far as I'm concerned it made me feel so bad, perhaps others will have the opposite feeling I dont know.

      Katie, I can feel your pain honestly and trust me I have been there too.  Its nag your Drs time to get that MRI asap, have you considered going private to get it more quickly?

      Always here to listen and offer advice,

      Good luck and remember this is the place to let your feelings out and we will listen, understand AND care.

      Take care

    • amber99286
      amber99286 kt8e

      Posted

      Hi Katie

      I have read through your post, I can really relate.

      As you can see from my post a little way up the page I have also had a constant headache for 15 months now - I wake up with it everyday and it gradually gets worse throughout the day.

      Do you get any other symptoms with the headache? E.g numbness/tingling, ringing in the ears? What exactly does your head ache feel like, is it throbbing/thumping or is at a tight pressure feeling?

      I understand about friends and family - its hard for them to see, but as its an illness that isnt visible it feels as though people think im exadurating, or making it up. Ive even been told that its my imagination!

      Have you been to Chiropractor, or tryed acupuncture?

      I have took Personal20 advise and have asked my doctor if they can refer me to Queens hospital in London, as ive seen dozens of doctors who havent helped one bit. Do you live in London?

      It is very stressful and depressing as its hard to belive you will ever get better, especially when you have had it over a long period of time and no one can tell you whats causing it and if/when you are going to get better. I feel like I cant cope anymore, but what can we do?

      Its so nice to know there are other people out there that understand this pain - if you would like to talk/moan on here or ask for any advise just comment on this post, It brings comfort to know im not alone - living an absolute nighmare!

      Amber x

    • StevenRose
      StevenRose amber99286

      Posted

      Hi Amber,

      Just wanted to let you know its not Queens hospital in London, its The National Neurological Hospital but it is in Queens Sqaure London.  I agree that we are not always taken seriously by some people that because our condition is not something that can be seen,  But we sure as anything feel it.

      Good luck with your referal to see the Neurologist there, the Drs name is Dr Matharu

  • kt8e
    kt8e Becky-Louise

    Posted

    *I hope by now you have been able to find some relief for your pain, I am so sorry to hear what you are going through, know that you are not alone

    (I apologise as in my last reply I feel that it was quite a rant about myself! I'm just quite lost atm and my head is all over the place)

  • RhondaM
    RhondaM Becky-Louise

    Posted

    This is my every day. I have been on so much medicine it is insane. I had a severe head injury at 19 that started them. Right now I am on day 11 of a migraine. I only has 1 day in between multiple migraine days. I hope yours get better. I wish they would do something to fix my head. I can't deal with the constant pain either. Nothing helps to get rid of them. I hope you got some answers.
    • StevenRose
      StevenRose RhondaM

      Posted

      Hello Rhonda,

      What medicines are you taking btw.  I am interested to know because I take a lot too and they control my migraines and cluster headaches sometimes

  • charlotte82515
    charlotte82515 Becky-Louise

    Posted

    Everything you have written here i have the exact same problem for the past 2 years and i have still not found out what is wrong.. it is getting to me so much.. im even on the same tablets.. i cant hardly sleep.. its made me wana lock myself away in my room in the dark away from everyone and everything iv also been getting confused and forgetting things and dizziness.. my ct scan came back normal. You posted this over a year ago. Did you find out what was wrong? Might be the same thing? It has been so horrible not been able to speak to anyone who actually understands what i am going through.. from charlotte.
    • StevenRose
      StevenRose charlotte82515

      Posted

      Hi Charlotte,

      On here we dont proclaim to have all the answers, but we DO understand and know what you are going through as we all suffer in some way.  The fact your CT came back as normal doesnt mean you dont have a problem somewhere, insist on an MRI scan with contrast, this is a very detailed scan and will show up a lot more than a CT scan will do.

      I know that many drs dont understand or appear even to care, but if you get a good dr and Neurologist then you will not only get full support you will get the right medication to control your symptoms.

      The brain is a very complex organ and even the neurologiists dont fully understand it.

      keep fighting Charlotte and you really have to NAG the drs to get somehwere in this and I am sure you will.

      Take care and remeber this forum is for support and understanding, just let us know how you feel and someone will always come back to you.

      Good luck

    • amber99286
      amber99286 charlotte82515

      Posted

      Hi Charlotte

      Sorry to hear youve had to go through the same thing for so long.

      I have just written a post to 'Kt83', and would like to ask you the sample questions. Could you take a look and get back to me?

      If we know we share the same type of headache/symptoms then maybe we have more chance of helping eachother

      Amber x

    • amber99286
      amber99286

      Posted

      Sorry, meant to say the 'same' questions, not sample!
    • charlotte82515
      charlotte82515 amber99286

      Posted

      My symptoms are tingling and numbness around my face and lips sometimes and burning sensation in my head and i get confused alot and forget things. My mind goes blank when im in a middle of a conversation my eyes hurts like crazy when my head hurts really bad especially my left eye cos ot swells up and my vision goes blury. Iv had eyes tested so its not my eyes. My headache is like a thumping, throbbing and tight pressure feeling all together at once. My head hurts more if i go outside during the day so i stay in my room with the curtains closed everyday and my head seems to be worse on a night time when im trying to sleep. My doctor has put me on loads of tablets. Even on antidepressants.. i started gerin the odd shootin pain wen i was 15 then all the headaches and confusion and everything started when i was 17 and in 21 this year.. feels like this has taken over my life and i havent even had a chance to even start living my life yet. This has made me lose all my friends. Iv been for all kinds of scans n tests and everything comes back normal. Its starting to make me think im going crazy but then i found this website and realised there are others that are going through the exact same thing. It is such a relief to find someone who knows what it feels like and what it does to your life.

      Charlotte. X

    • StevenRose
      StevenRose charlotte82515

      Posted

      Hi Charlotte,

      Are you able to get refered to where I go to in London?  They are the country's headache specialists and they really do understand how you are feeling.  They wil probably do more tests but different ones, to try and help you.

      Best wishes

    • StevenRose
      StevenRose charlotte82515

      Posted

      also wanted to say, you arent going crazy you will come through this Charlotte, everything will work out soon ok.  We are all in the same boat and this site is specially for us!  You can come on here when you are having a bad day and just moan and say anything you like, we are here to support each other
    • charlotte82515
      charlotte82515 StevenRose

      Posted

      Thank you. And i wouldnt be able to get to london even if i wanted to. My family dont really understand or even believe me of what i am going through so they wouldnt help me by giving me a lift in car to get there. They only do things like that if my sister has a problem. Im the daughter of my family that is always on my own when is comes to my own problems or things like this.
    • StevenRose
      StevenRose charlotte82515

      Posted

      I am sorry to hear that Charlotte.  I suppose getting there by train is out of the question too?  I have to travel by train as I dont live near to London.  It really is the best place to get this sorted out, if you can possibly get there I strongly urge you to try.  They will put a plan of action in place and you will have stepping stones to get back to some sort of a normal life
    • charlotte82515
      charlotte82515 StevenRose

      Posted

      I av a problem with my back and neck cos i have damahed muscles and nerves in my neck n goin down my spine now so i cnt sit up for that long on a train or anywere really. Thats why it is hard for me to get anywhere.. this head problem aint my only problem i ant been able to get sorted yet. I have absolutely loads of stuff wrong with me. Doctors just seem to send me away with more tablets which dont help.. x
    • StevenRose
      StevenRose charlotte82515

      Posted

      what drs are you seeing at the moment Charlotte?  Do you see a neurologist and sounds like you need to see an orthopaedic specialist and a pain management specialist too
    • charlotte82515
      charlotte82515 StevenRose

      Posted

      Yes iv seen neurologist and i have been having some physiotherapy to try and help with my damaged muscles and nerves. All my other problems are just taking slow on getting sorted as i am a bit impatient as its been going on for years but its mostly my head i want to get sorted right now as its the most painful one.
    • StevenRose
      StevenRose charlotte82515

      Posted

      What meds are you taking right now for your migraines Charlotte?  It sounds like they arent working very well and you need a review of them to help you.  When do you see the Neurologist again?
    • charlotte82515
      charlotte82515 StevenRose

      Posted

      The neurologist isnt bothering with me now my scans have come back normal.. and i am on toprimate. Co codemal. Amitriptyline (anti-depressants) and on about 8 more boxes of other different tablets which are too many to type down and hard to pronounce lol
    • StevenRose
      StevenRose charlotte82515

      Posted

      Topirimate and co-codamol could be making you feel worse, they certainly did me and if you ask on here about Topirimate you will  get many people say its terrible!  In you case you need to nag your drs to get the right treatment, explain how badly its affectng you life and you need answers
    • charlotte82515
      charlotte82515 StevenRose

      Posted

      Non of them actually work. Doctors have changed my tablets a few times, but non never seem to work. They dont make me feel any worse. I just feel the same as i did before i was on any of the tablets.
    • charlotte82515
      charlotte82515 StevenRose

      Posted

      I have told my doctor about what its doing to me and what its doing to my life and everytime she just suggests councilling which iv done loads of times but doesnt make any difference
    • StevenRose
      StevenRose charlotte82515

      Posted

      if you get the rght councellor you can trust and feel ok with they really do make a difference.

      Have you ever had Osteopathy and massages, they would make a difference to how you feel and help you look at things in a different way.

    • charlotte82515
      charlotte82515 StevenRose

      Posted

      Nothing helps with my head. I have tried everything. Councilling doesn't work. Iv tried it with 8 different people in the last 5 years. Talking doesnt make the pain go away. The only thing would make me happy and make me feel better would be if the pain wud go away from my head. Just want my life back.
    • StevenRose
      StevenRose charlotte82515

      Posted

      Ok you need a thorough review of all your meds to see if they are any good or not,  For headaches I take Pregabalin and Verapamil to help prevent them and Sumatriptan to get rid of the headache when it starts.  I also have Botox which also seems to help as well,  Have you tried any of these suggestions?
    • charlotte82515
      charlotte82515 StevenRose

      Posted

      Iv been through all my medication with my doctor and neurologist and a specialist and apparently they are safe. At first before reviewing them they thought it was my medication causing the headaches but as we went through them it wasnt. As i had this problem before bring on any medication.. im going back to see my doctor monday. I am just going to keep going on at them till they do something about it. Cos iv had enough of this.
    • StevenRose
      StevenRose charlotte82515

      Posted

      Thats the best thing to do Charlotte.  Good luck and let us know how you get on.  You need to get answers to your headaches and you also need to get on with your life.

      Take care

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