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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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  • josh42304
    josh42304 Becky-Louise

    Posted

    Hey, I see this was posted over a year ago... How are things? My girlfriend is 21 and this sounds EXACTLY like what she has. Every day, 24/7, she has migraine headache. She just randomly woke up with them one day a year and a half ago. We feel like we've tried everything... right now she finds relief with Norco, but she doesn't want to be on that for the rest of her life. She's depressed, feels defeated. She can't hold a job and struggles with school... I would love to hear if you have learned anything else. Thank you.

    • wildjflippin
      wildjflippin josh42304

      Posted

      I'm still having just about daily headaches. I resigned yo taking an Imitrix just about every day. I know that's bad but I have to have A LIFE and can't be in severe pain all the time, I've tried everything and nothing works. I know I'm rebounding with the Imitrix but oh well...

  • anni59726
    anni59726 Becky-Louise

    Posted

    Hello, I am so sorry to hear about this terrible headache of yours. I am going through the same thing right now, only it's been 8.5 months so far. i've had an MRI than came up normal, along with blood tests, a renal ultrasound and an echocardiogram. All were normal. My doctor also gave up on me, and there's nothing I can do (ie getting a new doctor, going to a headache clinic) until I turn 18 in a few months. I saw a neurologist, but she just thought I was stressed out and not sleeping enough, but over the summer I was getting over 10 hours a night. I'm so sick of nobody believing me, and the pain is constantly getting in the way of school and life. Have you been able to figure out what is going on? I am about to get a daith piercing, as some migraine sufferers have found out that it can stop or lesson migraine pain. 

  • maila01353
    maila01353 Becky-Louise

    Posted

    First of all I hope your feeling better now.  My daughter that is 17 years of years have the same thing. Miserable headache that nothing works.  We already tried almost everything, went to Duke supposed be headache specialist, but nothing.  I am writing this to find out if there is something that works for you now. Please share with us. Thank you.
  • joan33480
    joan33480 Becky-Louise

    Posted

    i am suffering from headaches since i was 12 now 63. it was only when i went to a neurologist here in ireland that iwas first told that they are chronic daily migraines that i have. i have tried botox inpatient DHE and icu for 12 days getting iv lidocaine also all the preventatives ,nothing has worked. i have been over to kings college hospital london twice in the last year as there is nothing else in ireland to try. i saw professor peter goadsby a specialist in migraines. maybe he cold help it is said 2017 will see a lot of new things for migraine. i am a full time carer with my brother for my 94 year old mother so i can feel exhausted when i am in pain 24 hours a day. going into hospital next week for a sleep study as sleep apnea can cause mifraines upon wakening. i am using a gamma core device for 2 months but it hasnt helped. ialso seffer from anxiety and depression which has got worse due to the pain/
    • bvalentine
      bvalentine joan33480

      Posted

      I am a 50yo man, my earliest memories in life are of migraine pain. I have come to accept the idea that my normal is to have migraines, but recently I have come to the realization that although I will never be rid of migraines I can be rid of the pain. Migraine pain is registered by the nerves. It is my belief that desensitizing the nerves, training them to be less reactive, is a possible solution. I came to this belief out of desperation at a time when I had a migraine that lasted over a year without one second of relief.

      I took a regimen of Prednisone (a corticosteroid) and Naratriptan (migraine med.).

      Prednisone (50% morning / 50% evening):

      3 days 60mg

      3 days 50mg

      3 days 40mg

      3 days 30mg

      3 days 20mg

      3 days 10mg

      Naratriptan (take with dinner):

      9 days 2.5mg

      ***Do not take pills on empty stomach and have plenty of antacids.

      Do this regimen every 3 months.

      Consult with your doctor first, I am not one.

      Good Luck!!!

    • bvalentine
      bvalentine

      Posted

      Also, botox at all the nerve centers and control the sleep apnea.
    • joan33480
      joan33480 bvalentine

      Posted

      thank you for your help. i am hoping to go over to london for a trial of an ijection that has being developed for migraine.i was with my orthopaedic surgeon for steroid injections and he said i need a full knee replacement.while i am looking after my mother that is not possible. iam going to see another surgeon to see if he could recommend anything else.
  • lily_81340
    lily_81340 Becky-Louise

    Posted

    I am 13 YEARS OLD !!! I have had the exact same thing for about 9 and a half months i have tried EVERYTHING!!! but nothing will help!!! Have you had any luck=!!
    • joan33480
      joan33480 lily_81340

      Posted

      i am afraid nothing has worked for me so far , sitting here with the pain on left side of my head because it hurts when i go to bed and lie on my side. I am going into hospital next week for a sleep study in case i have sleep apnea as this causes migraines in the morning which i have everyday.
  • zaryn68387
    zaryn68387 Becky-Louise

    Posted

    I have the same exact problem 18 y/o female. My doctors thought it was tension headaches to. I've tried all the meds and everything nothing is helping.

  • jennifer72248
    jennifer72248 Becky-Louise

    Posted

    I know t his is an old post and have no idea what happened with the headaches. I came here looking for my 14 year old daughter's headaches and saw this thread.  Since you seem to have tried every avenue.... Try a lyme literate doctor and get tested. Migraines are a big lyme symptom. I have had lyme and it isn't pretty.  I just wanted to comment because I felt bad for you and I know the feeling of trying to find out what is wrong and every test is normal..but you know something isn't right.

    • franca_1712
      franca_1712 jennifer72248

      Posted

      Hi jennifer

      Isn't lyme disease caused by a tick bite? Migraines is only one of many symptoms. I'm stumped with my 12yo. Everything has come back clear and the only person in the medical profession that believes that it's possible to have non stop migraines (today is day 91, 2nd time round-first time was 23 days), is our gp. Paediatricians believe my daughter is lying. She's had far too much time off school. She doesn't function in the morning. Pain slowly eases by the afternoon as she spends her mornings asleep. So over it.

    • lily_81340
      lily_81340 franca_1712

      Posted

      I am 13 that's exactly what I have got !! I have had no luck !! Too many days off and no relief, doctors think I'm lying so do the specialists. Has your daughter had any luck?? ??????

    • franca_1712
      franca_1712 lily_81340

      Posted

      No lily. No luck. Mri revealed nothing. Was extremely anaemic (low iron) in which migraines are a symptom so had an iron infusion. Levels are up but migraines continued. Tested for coeliac disease as migraines again are a symptom but all clear. Private paediatrician (we're in australia) believes it's not possible and recommends psychologist and psychiatrist. Psychiatrist to be prescribed sleeping tablets yet she sleeps well. Public system paediatrician rang me monday and doesn't really believe it's possible either but is prepared to investigate further. I'm waiting for a phone call today from him as he says my daughter needs to be seen asap. This all stemmed from stress but now it's getting ridiculous. Pain relief doesn't work. Massage makes it worse.Hasn't been to school since august but has managed a couple hours here and there in the last couple of weeks. Her pain lately has been 10/10. It can get as high as 20 (that's really severe and not pretty to see her in so much pain). It has been averaging 2-4/10 but this week it's climbing back up.

    • lily_81340
      lily_81340 franca_1712

      Posted

      Where abouts are you in Australia ? We are from Melbourne ! I have had an MRI too but nothing pain relievers don't work 😰!! In exactly same position mum would like to contact you for support ??? Love lily

    • franca_1712
      franca_1712 lily_81340

      Posted

      We're in adelaide. I'm glad, but not really, that someone else understands, if you know what I mean. I'd be happy to chat to your mum, absolutely x

    • StevenRose
      StevenRose lily_81340

      Posted

      Hi Lily,

      Very rarely does the MRI pick anything up and on the plus side, you know you have nothing sinister going on, but that doesnt help you.  You could talk to your Dr about triptans or Flunarizine, these have been a great help to me, as has Botox, which is recognised as being a treatment for migraines.

      Preventative meds include Nortriptyline, Pregabalin and Verapamil.

      Good luck and take care

      Best wishes

    • StevenRose
      StevenRose franca_1712

      Posted

      You are right that only others sufferers understand and in fact care.  many Drs will either not believe us or think that migraines are trvial and then tend to ignoore us.  We have to nag them to get anywhere
    • franca_1712
      franca_1712 StevenRose

      Posted

      Can i just say, that it sounds like lily and my daughter are suffering in the exact same manner. My daughter has tried sumatriptan/immigran and had a severe reaction to it. Aren't these medications designed for the onset of migraines? You can't really prevent something if it's ongoing. My daughter's migraines don't stop. I watch her sleep holding her head and crying. I just wish I could take her pain away...

    • StevenRose
      StevenRose franca_1712

      Posted

      Hi Franca,

      Yes you are right that Sumatriptan isnt for everybody and that it works best when you can take it at the onset of a Migraine.  Your daughter needs something to deal with the pain and seeing her go to sleep holding her head I can understand is aweful.  Anybidy who has children will relate to that and wishing they could take the pain away.  I spoke about Flunarizine its a medicine given to children in Great Ormand Street hospital for kids that have migraines, so this may be worth looking into.

    • lily_81340
      lily_81340 franca_1712

      Posted

      Hi yes this is exactly my situation with my 13year old daughter, Lily .

      We are currently going to the Melb. headache clinic & are hoping some relief comes . He says it's from the neck .

      The immigran tablets did nothing for lily cause as you say , it's ongoing - not starting & stopping . It has been so so distressing !

      Annie

      Lily's mum

    • franca_1712
      franca_1712 StevenRose

      Posted

      I'll give anything a go. I wonder if they'd prescribe her that medication here in australia. next step is a naturopath.

    • franca_1712
      franca_1712

      Posted

      I was told to take gabby to chiro to have her neck cracked but physio said her neck was fine. To be honest, I would have been happy if her mri results had turned up with something just so we could know what we're dealing with. Paediatrician referred us even though our gp said nothing will be found. It's stress. I'm aware that it's stress but even when my daughter's not stressed, migraines still happening. School counsellor and her own personal counsellor have said that if the migraines continue, she'll just have to get on with life and basically suck it up. I know someone who's son is now 35 and has had migraines every day since he was 9 and the only relief is to lay on the cold concrete

    • StevenRose
      StevenRose franca_1712

      Posted

      well they should if you have it in Australia. I have had other things which you may consider too, if your daughter is old enough to have them and its Botox and multicranial nerve block injections, the latter being quite a traumatic experience, but they may be benifical.  I know you said you have tried sumatriptan but have you tried the injection version?  yes it does work best when they come on, but I know from experience that even when the headache has been running for a while the injections still worked for me.  They are not like a hypodermic, but more like an epipen
    • StevenRose
      StevenRose franca_1712

      Posted

      you are right that stress plays a part in this.  I suffer from hemiplegic migraine and cluster headache and the former usually puts me in hospital because it disables me, but since destressing my life its made a huge difference,  regualt Indian head massages are very relaxing and have contributed to my stress busting routine.  Nortriptlylene is a medicine that has pain relieving qualities and anti depressant qualities too and have helped me.  I am not saying that anything I am suggesting is a magic cure, but just something to consider with your daughter and Drs
    • franca_1712
      franca_1712

      Posted

      Thanks for all the advice👍

    • StevenRose
      StevenRose franca_1712

      Posted

      they are painful, but if they help in the long run it maybe a consideration.  It could be that not just one thing can overcome the headaches your daughter has, but a combination of things.  Relaxtion therapy, various meds and possibly injections
    • StevenRose
      StevenRose franca_1712

      Posted

      I am am thinking hard what might help your daughter, Franca and Lily too, as I know the feeling of seeing your child in so much pain or unwell in general.I have been with my son to hospital having svereve chest pains, palpitations and having dificulty breathing and I can tell you that was the scariest thing ever, not knowing if he was even going to live!  I have just done some research and teens can get Botox to treat migraines, it should be the same in Australia too.  This has been amazing for me
    • StevenRose
      StevenRose

      Posted

      oxygen therapy is another option, this may be a benefit. Its another recognised treatmet for migraine
    • StevenRose
      StevenRose franca_1712

      Posted

      I have just looked on a website and came across a section for children that get migraines long term.  It says to try nasal spray triptan.  I happen to know this is called Zolmitritan
    • franca_1712
      franca_1712 StevenRose

      Posted

      I've just googled all alternatives. Oxygen therapy is obviously the least painful. Just got the look of death from my daughter when i told her about the botox and the nerve block. Will look into all. Much appreciated. Thank you

    • StevenRose
      StevenRose franca_1712

      Posted

      You're very welcome Franca.  One final one I just found is transcranial magnetic stimulation, its a stimulation device to use at home.  I dont know much about this myself, but I think its a bit like a TENS nachine

    • StevenRose
      StevenRose franca_1712

      Posted

      Just thought, if you told your daughter many celebreties have Botox, she may change her mind lol
    • franca_1712
      franca_1712 StevenRose

      Posted

      The tens machine came up on the news a few weeks ago but again, it's for the onset of migraines. The nasal spray sounds right up our alley. My daughter even approved. Will definitely look into that one. Thank you once again x

    • StevenRose
      StevenRose franca_1712

      Posted

      You are into a winner if your daughter approved lol.  Give it a go, you have nothing to lose.

      Very best wishes and keep in touch, let us know how you get on.

      Take care

    • JulesAnn
      JulesAnn franca_1712

      Posted

      I am just catching up on this thread and picturing your daughter sleep holding her head and it made my heart ache. I know that feeling all too well. I am not sure if this will work for her but I actually tie a soft winter scarf around my head. I wrap it around twice and the pressure helps me cope a bit better. If I am lying down I will even put it over my eyes. I look like Aunt Jemima, which may not mean anything to you in Austrailia, but it has helped. :-)
    • JulesAnn
      JulesAnn franca_1712

      Posted

      Annie - one piece of the treatments that helped me get my chronic migraines managed was quantum biofeedback with a naturopath. It would not have fixed everything but when I did start to get them under control any time they would come back and not want to leave I would schedule a quantum biofeedback appointment and it would stop the migraine. I feel like it helped give my system a reset and broke the cycle of migraine.
    • franca_1712
      franca_1712 StevenRose

      Posted

      So we were at drs yesterday to see whether any of your suggested medications may work. Flunarizine is not available here in Oz. The nasal spray but given here in tablet form would have been the most ideal medication for my daughter. However, because she had a reaction to sumatriptan, she more than likely will have a reaction to zumatriptan as it's from the triptan family so no go. The other medications are for adults only and wouldn't have been tested on kids. One in particular is for angina patients, chest issues. She doesn't recommend either of the needle therapies as again, not tested on kids and no guarantees if these cluster migraines are caused by stress. Gp suggested getting her daith pierced but again, I've looked into all these options and no guarantees. Paediatrician rang me friday and suggests my daughter keep a diary of her day. Food intake, type of activities, pain rating etc until we see her in a couple of weeks. Ringing a different naturopath on monday as first one i tried couldn't be bothered to get back to me. Daughter's physio has heard of quantum biofeedback. No harm in trying.

      Thanks all for the advice and options given. Fingers crossed for my daughter and everyone who is going through this. ?

    • StevenRose
      StevenRose franca_1712

      Posted

      Hi Franca,

      The problem with headaches in any form, their is no treatment guarantees, what works for one doesnt for somebody else, frustratingly!  I agree with you about the daith piecing, not a very good idea from your GP.

      One simple thing you can try is putting something cool on her forehead.  I know this might sound pathetic and it may not take away all the pain, but it is soothing and relaxing.  Something else you may have there is a product called forehead and you simply rub it on the forehead as the name suggests, its not a medicine, but if it works or helps, worth a go,

      I hope you find something soon to help Franca.  Please let us know if you get a breakthrough.

      Very best wishes, take care

    • franca_1712
      franca_1712 StevenRose

      Posted

      She goes to bed with an ice pack and will use a wet face washer throughout the night sometimes. The other item sounds similar to what we have here called a migraine stick. It didn't agree with her either! Funnily enough, she had a couple of seconds relief after getting brain freeze! Yesterday was a 'good day'. Woke up with a 5/10 migraine. Averaged 3-4/10 throughout the day. Sat on 7/10 whilst at drs. After brain freeze, dropped to 3/10. Woke up seconds after falling asleep and told me her head was at 2/10 after 'chatting' to my deceased dad who was telling the migraines to go away! She's not yet awake ( it's only 8.30am here ) but am hoping pain is low

    • StevenRose
      StevenRose franca_1712

      Posted

      what is brain freeze Franca?  I know cold can be good at giving relief sometimes.  The fact your daughter doesnt sleep very well doesnt help at all.  I have learnt one thing since have migraines myself and thats sleep plays a huge part in this.  Too much can be as bad as not enough but the main thing is uninterupted sleep is whats needed.  Did we already discuss the MRI scan?  I cant remember.  Its interesting its now nearly 11pm here but thats saturday you must be on sunday now right?

       

    • StevenRose
      StevenRose

      Posted

      will have to sleep now myslef else I will have problems,  Just get back to me with when you like and if I can think of anything to help I will.

      Take care

    • franca_1712
      franca_1712 StevenRose

      Posted

      Brain freeze is when you take in too much amd too quickly ice cream or a slushie etc. Goes straight to your head.

      Gabby does sleep well but it's only been the last few nights she's been holding her head. MRI was clear

    • franca_1712
      franca_1712

      Posted

      So now my daughter's migraines continue as such but have turned into cluster headaches. It's been a week of painful 'attacks' and I just have to sit back and wait til they ease. Sometimes gabby will have 1-2 attacks in the morning. They used to be about 3mins long. 2-3attacks at night last between 14-20mins. Have started seeing a naturopath and gabby has started on her meds. Was hoping she'd be back to school monday but I guess we'll be writing that off. Paediatrician not for another couple of weeks. I feel absolutely helpless. Gabby is 13 next Friday, far too young to be suffering cluster headaches and currently missing out on her life.

    • StevenRose
      StevenRose franca_1712

      Posted

      Hi Franca,

      I really feel for you and I am sorry for your daughter suffering so much pain being so you.  Have you tried using a cool gel you can get to lay across the painful area.  you can either freeze it or warm it.  It comes with a cloth sleeve so the pack is not directly on the skin.  I realise this wont take the pain away, but it may soothe it

    • StevenRose
      StevenRose

      Posted

      I didnt mean so you, I meant so young
    • franca_1712
      franca_1712 StevenRose

      Posted

      She uses one to finally goes to sleep with but refuses anything during an attack. I've even given her a brown paper bag to breathe into as attacks can be caused by lack of oxygen to brain. Gabby either holds her breath or has short, sharp breaths but she just can't.

    • StevenRose
      StevenRose franca_1712

      Posted

      the paper bag thing is for panic attacks that have too much oxygen in the brain, you need actually to have an oxygen cylinder to inhale pure oxygen to have an effect.  This is a recognised and safe way to treat a cluster headache.  Your dr can get the oxygen
    • franca_1712
      franca_1712 StevenRose

      Posted

      Yes i know. It's the only thing I could think of to slow her breathing down. Will be ringing a headache clinic tomorrow. GP is stumped. 2 paediatricians don't believe her so waiting for a third one. And naturopath thought her head pain just came and went, not ongoing. Today is day 102 by the way...😢

    • StevenRose
      StevenRose franca_1712

      Posted

      Bless her!  Its crazy why some drs dont believe people, why would anybody make something like that up.  Good luck with 3rd paediatrcian.

      The problem is some of the drugs cant be given to children and the one which she can have they dont have, you said, in Australia.  Flunarizine.  However I am sure the dr will have something for your daughter to try.  I am sorry I am not much help as I have exhausted all the ideas I have.  Do keep me updated please, as it might help me too what you find out.

      Take care and best wishes

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