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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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  • wildjflippin
    wildjflippin Becky-Louise

    Posted

    I am thankfully retired, I came into an inheritance or I'd be sunk!   I had a lot of trouble when I worked one place wrote me up continually even tho I had a note from the ER at the hospital.  I was always the top salesperson for my hotel so I was tolerated even tho sick a lot with the headaches. But when I got the money I gave up working.  I doubt I could work now... I am blessed in that respect
  • zazabell86
    zazabell86 Becky-Louise

    Posted

    Hey becky

    I also have the same problem and have been given pretty much the same tablets too only I have had the other treatment yet.

    I have had this headache now for four days now and it really hurts bad it feels like my brain is going to burst any moment if I bent down or cough if I move my head to fast it kills me lights hurt my eyes I can't eat hardly it's very hard so I do get you.

    If you ever need someone just to talk to when your low and do feel like ending it coz ive been there too I'm here for you. It is hard I cry most days I don't have anybody to help me or just someone to help me feel better somehow you know.

    It's hard I know but I don't know where else to go with it either my doctor sees me more or less every day now to figure this out not to mention I have asthma too say I was born without it as well this is a mad world. I wish I did know what to do for you and me really I haven't had scans yet no one even send me for them or anything.

    I hope you get well soon and we both figure it out soon I don't think I can take much more of it tho xx

    • Becky-Louise
      Becky-Louise zazabell86

      Posted

      Hi Zazabell,

      What tablets are you on? And what have you tried? Are you with a GP or an neurologist at te hospital? If your just with a GP request, and demand, to be referred to a neurologist to have scans done etc.

      When I was under my GP at the beginning, I only got sent for a scan because I went to A&E because the pain was so bad I didn't know what else to do, so they sent me for scans and luckily it came back clear. But that was maybe about a month or two before.

      But they should have sent you for at least one. How long have you suffered with them altogether?

      Try not to get too down about them, I think that used to make me feel worse than I already did because you stress and get so upset because of them that you make the headaches worse. It will get easier!

      I no longer feel the way I used to anymore. I got myself a new job and stopped trying to manage at uni with the migraines, as it was like the world was lifted off my shoulders. That helped with everything because I stopped stressing about parts of my life that my migraines affected.

      I can now go out and actually have a life. There are still somethings that set my headache into a full blown migraine but I know what triggers that, I know what to avoid.

      While you wait for doctors, try changing things about your own daily activities that might be setting things off.

      If you ever need to talk, then you can reach me on here. But don't let this beat you! xx

    • zazabell86
      zazabell86 Becky-Louise

      Posted

      I take amitriptyline and another one I can't remember what it's called coz I took the label off today messing lol. Tropsomthing anyways but these have been like this on and off for like six years they just got worse over time staying longer and more painful.

      Nothing seems to get rid of it till its ready to go it's hard.

      I'm worried as my brothers started like this and his was a tumor I go to the doctors but feel I get no where I rang the nhs no emergency number and got attitude of the lady who answered too I feel lose and at a limb I've had lumps appearing hear and there but feel alone.

      I'm glad someone is going through the same and I'm not alone but feel sorry for you now too it's horrible ain't it it's nice to have someone who finally understands me tho.

      Thank you for the reply becky I will defo do that tho I hope it ain't nothing serious tho x

  • Dewing
    Dewing Becky-Louise

    Posted

    Becky-louise

    i was wondering what you ever out? Any answers or solutions to your migraines?

    i have a 17 yr old daughter that is experiencing a lot of the same things. Migraines for days, sometimes weeks, the very first one was for several months. We've tried numerous meds, test, drs, neurologists. She has managed to keep her grades up and miss little school but I really worry how she will handle college next year!!! She has found a massage therapist that has helped some but college is two hrs away and this is the only therapist I have ever gone to that has done this particular technique.

    i suffer from migraines but not to this extent.

    i would be forever grateful if you would share an update. I pray you have found some answers and much relief!

    thank you!

    • Becky-Louise
      Becky-Louise Dewing

      Posted

      Hi,

      I saw a neurologist for nearly 2 years before she eventually couldn't help me anymore, so she sent me to a migraine specialist. The first thing he put me on was a blood pressure tablet called Candersartan and it's helped loads! I'm not actually sure when he tried me on these, because my blood pressure is absolutely fine. But I ran out of them and it was nearly 2 weeks before I could see my GP to get more, and I couldn't cope without them! My migraines were so bad I could hardly get out of bed.

      I don't take any painkillers like paracetamol etc as much as I can because they cause rebound headaches wen taken regularly and make me feel so much worse.

      What I take instead when I do get migraines now is one of two medicines. I've got tablets called Rizatriptans (brand is Maxalt Melts, they taste awful but they melt on the tongue and act fast) and the te other ones I have are Sumatriptan injections (brand is Imigran) which are usually given to Cluster Headache patients, but I've only had to use these rarely.

      Hope this helps! xx

    • Vhope14
      Vhope14 Becky-Louise

      Posted

      Hello Becky! Thank You for seeking help on this site, like others have stated, its good to know we are not alone with these awful headaches 24/7! I have just finished my 2nd painful year. I am on so many pain killers and my life is work and sleep. I am on 200 mg of Topomax per day and I do find it helps a bit. I am lucky to be able to work from home several days a week but the drugs affect my memory and my cognitive skills and I work in the Legal system. I have been on botox injections for 1 yr. And initially they helped, but they don't last very long, and I can only get them every 3 months. I have no relief unless I check into the ER Dept. I am on 3 kinds of BP meds, I will check with my Dr about switching to the med you are on. Good luck, and just know that you do not suffer alone.

  • laurenjane
    laurenjane Becky-Louise

    Posted

    Hi Becky-Louise

    Im sorry to hear about your migraine, and I know it sounds bad but I'm pleased to hear I'm not the only one going through it. reading everyone's replies it seems there are quite a few of us. 

    I never thought a headache/migraine could just come on one day and never go. 

    I woke up on 4th November with a headache and I have had it every day 24/7 ever since. GPs gave me lots of different tablets, Amitriptyline, cocodamol, nothing worked. I had an MRI, came back normal. Tried chiropractor, didn't work. At the beginning of January I saw a headache specialist, he put me on Propranolol (beta blocker). So far, nothing, but he did say it could take a couple of months to start to work. 

    I haven't been able to work, I tried, but I'm a teacher and it was unbearable to teach with a constant headache. So I've been signed off. I'm so worried I won't be able to go back to work, and soon my pay will stop and I won't be able to afford my rent. 

    I would really appreciate updates, and I will do the same, if we can help each other that would be great. 

    Im going to mention to my specialist about the candersartan you are taking. 

     

    • laurenjane
      laurenjane

      Posted

      Sorry, clicked send by accident, although I was pretty much finished. 

      I'm really pleased you found something that made your migraine more manageable. I hope that it goes away completely, for the both of us.

      I'll update you on any progress.  

      Lauren, 24 years old

    • StevenRose
      StevenRose laurenjane

      Posted

      Hi Laurenjane,

      I have found that sumatriptan in epepen injection for my severest migraines, or tablets for less severe are my lifesaveer.  The injections take the pain away in about 10 minutes, the tablets take a bit longer, but they are so good for me!  Preventaive wise I have had most succes with Pregabalin and verapamil.

      Good luck

    • Vhope14
      Vhope14 StevenRose

      Posted

      Hello Laurenjane

      Thank You for your suggestions. I will discuss these meds wth my neurologist. I forgot to mention that I am also using a machine called Cefly. It is not available here yet. But it helps alot to relax me and helps me prepare to sleep. Can i ask what level your pain is daily?

      My pain level is never lower than a 7. Im 57 but i fear I will be out on Disability very soon.

    • StevenRose
      StevenRose Vhope14

      Posted

      Hi Vhope,

      I am not sure who you are rplying to.

      this was to me at the start, then you said hello Laurenjane.

      But my pain levels vary, but they are easily controled now with my medication.  So I can live a somewhat normal life thankfully, it wasnt always like this though, until I got the right medicines.

      Good luck

  • jo_anne_59556
    jo_anne_59556 Becky-Louise

    Posted

    Hi Becky

    I'm jo Anne I'm a 42 yr old women and I understand

    Your frustration, I'm so sorry for you.

    I've had migraine /head sensation + fatigue since June 2015. It started at work, I saw only half of my colleagues face whilst talking then felt weak. Was taken to A and E. Had an MRI scan blood tests. Found nothing. Went home I started having terrible heavy ,pin pricking, clamp like head sensation+ terrible fatigue, numbness pin pricking like sensation

    In my left arm and leg and in my spin and cannot sleep.

    So went back to A and E another MRI scan, lumber

    Puncture more blood tests. All clear. One Dr told me

    They found small amount of protein in my spinal fluid

    But the neurologist said no don't worry u have chronic migraine with functions (fatigue and numbness in limbs.) he was so cold like he did not care. He put me on amtriptilyne which I'm still taking. Tried propronal to, did not agree with me. Then 2 months later I was at home and I was watching TV I went in to a total rigomortise state whole body lost my speech lasted 2 hrs. My family took me back to hospital thought I was having a stroke. Hospital experience was shocking they treated me as if I was wasting there time no tests. Sent home told its my migraines. Since then I've had 7 of them I call them my attacks. Seen a neurologist 2x they've just told me to see chronical behavioural therapist snd accunpunturust done both.

    CBT therapist helped emotionally but I'm still struggling but I'm trying everything. Good luck. X

  • Guest
    Guest Becky-Louise

    Posted

    Hi becky

    I have a son who turns 20 this month. Next week he has his second "anniversary" of living with migrains. None of all the migrain meds have worked. He was sheduled for botox tratment. But I was not happy about that. Finely after getting a second upinion they found osteo arthritis in his third through 7th vertebrae. We are now in the process of finding a nerv pain blocker. So far nothing worked we are eeing the paindoctor Friday again. They might end up cutting the nerve with a gamma knife

    • Becky-Louise
      Becky-Louise Guest

      Posted

      Danielle, I hope everything works out okay for your son, but as bad as it sounds, at least they've found something though. Now they can help treat him. Nothing is worse than not knowing what is causing the migraines. Keep us updated, wish him all the best x
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