Migraines everyday, all day, for 9 months. Help!!

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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.

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  • Posted

    Hello Becky-Louise

    I am new to the forum and have just read your distressing story. I too am a migraineur. They started when I was eleven and now at 59 they seem to be getting worse not better.

    I haven't read the whole thread so I don't know if anyone has mentioned this. I have recently given up all products containing aspartame, the manufactured sweetener. Having read about it on the web it seems we are all poisioning ourselves. Not sure if it's helped yet as its early days. Just thought it would be worth trying. Good luck.

  • Posted

    Becky

    i have not seen anything yet on this thread for natural teas for migraines. I found on the Internet (teas for migraines) a sight with about 3 or 4 different teas you can use. I'm going to try them and will keep you posted.

    • Posted

      Hi Penny

      have you had any good results on the natural teas for migraines yet?

  • Posted

    Hi Becky -louise

    I am 35 yearsold. Just diangnosed with migraine 2 years ago. Now it has been 1 month i am suffering from having migraine everyday. I am having tbe same problem. Going to the GP and nothing helps. No migraine tablets can help. I was taking axert12.5 mg it was ok in the bigenning now it doesn't work. This is 2 days trying the one that melts on tongue. It doesn't work eaither. Neurologists appointment withing10 days. Can't sleep at night very interrupted aleep. Any advice? I ve never caffeine drinker nor choclate eater. Avoiding all the triggers still doesn't work. Can't watch TV or using laptop or phone from the headache. I amtired and stressed from that.

  • Posted

    Hi Becky -louise

    I am 35 yearsold. Just diangnosed with migraine 2 years ago. Now it has been 1 month i am suffering from having migraine everyday. I am having tbe same problem. Going to the GP and nothing helps. No migraine tablets can help. I was taking axert12.5 mg it was ok in the bigenning now it doesn't work. This is 2 days trying the one that melts on tongue. It doesn't work eaither. Neurologists appointment withing10 days. Can't sleep at night very interrupted aleep. Any advice? I ve never caffeine drinker nor choclate eater. Avoiding all the triggers still doesn't work. Can't watch TV or using laptop or phone from the headache. I amtired and stressed from that. Any goid kindof decaf tea that can help. I tried camomile and mint tea but didn't work

    • Posted

      Hi,

      I would suggest you try sumatriptan injections, the dr will prescribe them, they work the best for me, in about 10 minutes,

      Good luck and let us know how you get on.

      Take care

    • Posted

      Hi personal 20 ,

      Thank you for the reply. I will try to do so. Will update you qith the result.

  • Posted

    Hi becky-louise.

    I'm 19 and have suffered from migraines since I was 13. The migraines I used to get as a kid were full on starting with the entire left side of my body going completely numb then my vision either blacked out or whited out then would come the pain behind my eyes and temples head in general and vomiting. I went to many different specialists as a kid they all told me severe focal migraines, my father took me to this Austrian lady who did physio and all sorts with my head and neck super painful I remember crying nearly every visit well she told my dad to make me sleep with mouth guard because I maybe grinding,I went to many sessions of acupuncture. After I turned maybe 15-16 my migraines stopped randomly. Didn't have one until about 2 months ago but these migraines to me are not nearly as painful as my childhood head aches these head ache are mainly behind my eyes I am definitely photo sensitive and I don't like loud noises or music. I have been to 7 different doctors over the last couple months who all said migraines stress anxiety blahblahblah I have 3 different migraine specific pills I was pit on drip I had voltaren shots twice , had acupuncture, seen a naturopath who said I am chemical in tolerant due to bring born ceserian so I stopped eating any thing processed basically all I eat now is salad from my own garden nutribullet shakes and couscous and free range chicken. Completely changed my diet to no avail. Went to hospital got scan nothing showed up, had a glaucoma test nothing. Saw optometrist apparently my eyes are great. Now I am taking daily magnesium pills, liver tonic, acai berries (super fruit) rizamelt,voltaren d50,morphine,fluoxitine for anxiety nothing helps.

    Every test has come back fine

    Every pill has had no effect

    The only thing I can honestly say that helped was marijuana it is the only thing that actually takes the pain away. Its temporary but the relief of no pain even briefly is amazing.

    So yeah all you long time sufferers I know you'll all be as desperate as I am. No harm in trying!?!

    Thanks for reading

    First timer Jana

    Good luck 🍀

    • Posted

      Hi Jana,

      What a horrendous time you have had over the years! 

      Puts my experience into perspective!

      So a few things I have learned is that anything morphine related will make symptoms worse.

      Please talk to your neurologist about Flunarizine, it hasnt solved all my problems but its certainly helped.

      Good luck and let us know how you are getting on.

       

    • Posted

      You're story is very similar to mine EXCEPT mine have never gone away. But I live in CA and am also experimenting with medical marijuana to find some relief. I started out on high CBD content, with just a little relief. Now I'm trying a little higher THC content and that seems to help a little more. Would you mind sharing the following? Are you using Indica or Sativa, and do you know the content of THC to CBD? Thank you in advance for your help. 
  • Posted

    Hi, I had to stop and comment after happening upon your post. I unfortunately can feel your pain. I've had chronic Migraines since about age 15, and I've been to dr's all over the U.S. and no one can tell me why I have them or help me with the constant pain!! But after all these years (and really pushing for answers), I found a Neuro that ordered a CT-Angiogram to be sure there is not a vascular diagnosis. As you know, MRI's tend to not really help confirm or deny the existence of migraines. So there we sit, feeling guilty, miserable, and for me - like I got a "do-over" life because I've lost out on so many things due to these debilitating migraines. I used to say that I lost about 60% of my life to migraines, but now I think it's closer to 90%! SO don't be like me... Don't give up - and keep pushing for answers. I've decided that if I don't get answers from the CT scan next week, I will go back to the one clinic that really helped me: the Cleveland Clinic. They have a great Headpain clinic there and I imagine you may have something similar near you. Best of luck and be very open minded because you never know what unlikly source will give you relief. Read and research what others have done, they just may give you bits and pieces of relief until you find the magic bullet that works for you. I'm praying for you!!!
  • Posted

    Hi, I've not read whole thread, but I was diagnosed with new daily persistent headache about 10yrs ago. I have had a constant headache plus menstrual migraine since then. There was some r levied during later stages of pregnancy, so I am now researching link between oestrogen levels and headaches.... Mayo was referred to a neurologist for original diagnosis. Tried all the drugs and nothing worked.but worth you asking about it as it may not technically be just migraine? Sorry if I've got this wrong or repeated someone else's post.
    • Posted

      I too am living through my own personal hell with daily chronic migraines, neck pain, shoulder and upper back pain. Dr.'s always thought there was a menstrual component to my pain (and so did I because I experienced some relief during 2 & 3 trimester with both children) so ultimately I begged my OB for a hysterectomy. She wouldn't do it, but did perform an oophorectomy. Since then I've been treated with Estrodial and Progesterone as everyone thought Progesterone would be the magic bullet for me. The headaches did get better... For about 8-12 months, then they came back with a vengeance. I never imagined they could get worse but they have. I now have severe short-term memory loss, and experience episodes of falling down. I think it's safe to say that I'm much worse now. So just be cautious - what works for one person may not work for another, as I'm sure you know. But keep pushing for answers!! Remember, you have to be your own advocate! God bless you, I will keep you in my prayers. 
  • Posted

    Hi. I hope you are at least managing to keep spirits up. I have just read all 10 pages on your discussion. What a read and not easy as I am sure your aware with these issues. Every time I thought I had something to add I would read on to find someone had posted it later on. I have similar symptoms less severe than many here but I also suffer with vertigo. My symptoms are every day too. I know how frustrated we all are in the search for relief. At the very least I am sure we would be happier if only for a short while if we knew exactly what causes these symptoms in the first place. As you are aware the doctors and specialists have no real clue what the exact cause is and focus on masking the symptoms with medication usually causing other complications. I am keeping positive but I have only been ill for a year which is nothing compared to many here. It is a rollercaoster ride seeking answers and relief I know. one step forward two steps back for many of us. Only goes to show the patience and determination we have even though we are unwell. For me after only a year I have begun to realise I am much stronger than I thought. I thank you and all posters here for their insight and advice. You have all have covered every avenue I have found and researched online and more especially when it comes to medication and personal experiences. If only NHS professionals had such an open mind and the time to read what their patients have to say and offer when it comes to their well being. I hope for all of us that these symptoms suddenly disappear as quickly as they appeared.
    • Posted

      Jason - thank you for sharing. After 30+ years of this, my last bit of advice (but most important), change dr's if you get one that says "try this, and see me in 6 months" go to someone else. 1 hr. Is too long  when you're in pain. So if your dr thinks 6 months is reasonable - he/she doesn't get it.  Go to the best Dr you can afford/or your insurance will allow. A Headpain clinic is best, my personal belief is the Cleveland Clinic. Is the best in the US. I'm going there again FEBRUARY 16th and I know I will get some relief. Not permanent, but know I will get good care and some real answers that I can trust. Plus everyone there is just like all of us on this blog. Try to keep your spirits up, that's the toughest thing for me; I get very depressed and that's a constant battle. 
    • Posted

      Thanks you. Some good advice for all. I have an apointment in April for a Neuro-otologist as I am dizzy too and they specialise in inner ear problems but I think I will only be refered ( hopefully) to a neurologist as I suspect they will change my diagnosis to Vestibilar migraine as over the past 6 months my symptoms are changing and symptoms adding up buy the week. After much research my symptoms seem to mimic Vestibular migraine which is know to happen when Vestibular Neuritis goes on long term and is uncompensated.
    • Posted

      I have seen every doctor at my surgery and even if I can afford to go private to be seen quicker you have to get a doctor to refer you to them. They look at me funny and go blank when I ask to be referred.

      The frustrating thing is even after seeing a private specialist and getting a diagnosis you still have to wait on the NHS waiting list for treatment or therapy which is usually 9 months or more. It takes months or years to see a specialist here in UK on the NHS and after you get a diagnosis from them you then have to wait the same time again to get treatment.

      That is my experience anyway with vestibular Neuritis and Sleep Apnoea. When you turn up at the doctors each month saying your symptoms are getting worse and you have extra symptoms the just say you are on the waiting list to see someone and they are very reluctant to to refer you to someone else even if you believe you are waiting to see the wrong specialist. I am sure after 30 years you have experienced this many times. I have paid privately to see an ENT Specialist twice and paid for a full sleep study but I still have to wait to be retested by NHS before they consider treating me. When I looked at getting health insurance a while back the insurance company told me that will health insurance you will get seen quickly and after diagnosis you will get seen quicker for treatment on the NHS. This is far from true in my experience.

      Glad I did not get the health insurance now.

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