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

Posted , 296 users are following.

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

Prev Next
  • Posted

    Hi Helen thanks so much I never thought about her period that is a great idea I never thought of the pill my daughter has been getting headaches since the age of 7 but it basically came on by stress and would come maybe 10 times total a year so 10 days was not that bad this is crazy I started her on the magnesium pills today and also b12 pills today hopefully she will see some kind of relief I am going to get in touch with her doctor and get her started on the pill and you know her period began in June and the headaches started in september who knows if you are right I owe you big time thanks so much Stacey
  • Posted

    I have had what I thought was a sinus headache for 6 months, even had a sinus procedure done to help. I got about 3 weeks of relief and now they're back! My PCP told me he thinks they are actually migraines triggered by the weather and we are in the process of trying out meds. Nothing has worked so far...I am going for allergy testing next week and may possibly start allergy shots. Both my ENT and PCP think they might help... I also started taking feverfew for my migraines, not helping yet but it's only been a couple days and it's worth a try.

    I am sorry you're having so much trouble but I feel your pain and can relate. My headaches are nonstop as well and I always have to be on my a game... I'm an office manager at a really busy endocrinology office, mother of a 3 year old, and wife. Have you considered allergies? Not that ive gotten relief yet but it's worth a shot!

    Good luck and let me know if anything helps! I'm willing to try just about anything!

  • Posted

    Hi Becky-Louise, Ive had migraines since i was about 15, im now 38, and im in same positions as most people, nothing seems to work for me, Ive been on everything, at moment im on 5 different meds, Propranolol 40mg, Pizotifen 500 Microgram which i take 3 of them a night, Amitriptyline 10mg, Mirtazapine 45mg, and if all that fails which it has i take Sumatriptan 50mg, which don't work either, so now after all that Ive to go and see brain specialist, Ive also had ct scan MRI scan where they found a shadow on the left side of my brain, but they said that's nothing to worry about, also had lp, which my protein level was elevated, but no matter what i do the headaches are still there x
  • Posted

    Hi Becky-louise,

    You say there isn't anything that triggers the migraines particularly and none of the tests have come up positive, one thing that many people overlook in terms of headaches and migraines is a 'cervicogenic' cause (ie caused by problems in the muscles/joints in the neck). You should look into this and see a musculoskeletal expert.

    • Posted

      Is that same as a chiropractor?  I gave the mayo clinic a call in mn, see if they will see me? 
    • Posted

      I have had migraines since I was a toddler, per my mom. As I got older they continued and now I'm 42. I went into remission for about 10 years between my early 20's to 30. Doctors can't explain why. Typically get 3-4 per year. Moved to Arizona a year ago and have had twice as many migraines since I came here. Light and noise sensitive, nausea, vomiting, have yet to determine triggers. Started seeing a chiropractor in March and has helped, but not resolved migraines. I've noticed a decline in full fledge migraine when I am consistent with my daily allergy pill and ibuprofen in the morning. Currently seeing chiropractor 3x a week. About to go to 2x a week. Hate the pain pills and other drugs I've been given.
    • Posted

      The problem I find is finding a good one if anything. Many say something is their expertise, but it really isn't. I'm just joining this forum which is over a year old. How are you doing.

    • Posted

      Try the website Betsy. http://www.headaches.org/physician-finder/

      Simply list your state then look for a headache specialist close to you. This is how I found my doctor (and he is the only one in the area). In the phone book he is simply listed as a neurologist. Hope this helps. God bless

    • Posted

      Hi, I just found this thread, I was a triathlete, and now spend most of my time in bed because of migraines, I have them 24/7 they never go away it just depends on the pain level weather I'm out of bed that day or not, but some advise. I've been like this for 2 years and had every test under the sun done mris cts all kinds of preventive meds went to the hospitol for a ladicane drip for a week nothing makes this go away. The only test that does keep showing positive is ana, anti nuclear antibody, I'm very fatigued also, along with these migraines. So im finally going to see a rumatoligist to hopefully get some answers. So if you have ran into a dead end and think you just have migraines like I did ask your doctor to run a ana test on you , it can't hurt to see what the results come back.you might have a autoimmune disease causing this issue. It took ne 2 years and countless doctors to figure this out and take this approach. This I think gas to be the answer for me since this test has came back positive 2 times now and I have this crippling fatigue also tgat goes along with this 24/7 migraine, your symptoms mite be different u mite not gave to gave the fatigue naybe a rash or join t pains or stomach issues but if you gave these constant headaches that never go away have your doctor check you for a auto immune disorder becomes having a migraine once in a while I gave to be normal but to have a headache or migraine that just never goes away means there is done kind of underlying problem u just gave to find the rite doctor to figure it out and not just say oh I gave headaches 24/7 that never go away because I'm here to tell you I think that's nonsence. There is usually some kind of underlying condition to cause this condion. I'm not saying. People can't get migraine or headache alot but to gave it 24/7 that never goes away no matter what you take or do that just not rite and it's take me 2 years of nit giving up hope to figure that out.in 2 years I've been through 4 neurologist 4 treatments of botox, 4 treatments of occipital abd trigeminal blocks so many preventive migraine meds I've list track of the names and a week of ladicane infusion and 15 mg 3 times a day of oxycodone to barely take the pain away. Something is not rite for a doctor to diagnose me and say I just gave migraines. A neurologist should have his licence to practice taken for that kind d of diagnosis.ive even been told it's because of the pain meds I take yet put of the blue I can have a good day. If it was because of my pain meds I just wouldn't have a good day out of no were.folks I'm here to tell you to just not always rake these doctors word for wgat it's worth one neurologist told me it's a sleep issue. I need to stay out if my bed so nany hours a day. Here's a real genuis. How am I suppose to do that when I'm at a pain level of 7 or 8 and barely functioning. Maybe you guys have had better luck with doctors then I have but if this comes back as a auto immune disorder wich I'm pretty sure it us since that test is positive 2 times now I'm going to be pretty mad at these neurologist making all these bad calls. Do some research and ask for tests demand them you have to because you don't want to spend the rest of your life in pain in your bed like j gave for the past 2 years because doctors have no clue what they are talking about saying you gave cluster headaches when you have a autoimmune disease

    • Posted

      Hello.

      I have migraines on the right side of my head almost every day and was diagnosed with an autoimmune disease in 2002. (Antiphospholipid syndrome.) I had my first migraine at the age of 12, many decades ago, so have probably had this autoimmine illness since birth, migraines are just one of many symptoms of it. I've tried the usual preventatives over the years, the ones I'm allowed to have that is, sanomigran, amitriptyline, beta blockers and topamax, which I still take, but I've made a Dr.'s appointment to ask to come off them as they don't work any more and the side effects have been horrendous, they've weakened my eyesight which in turn have made the migraines even worse.  

      I'm not allowed to take any pain killers, apart from paracetamol (tylenol) and they don't help at all. All other painkillers apparently interact with the blood thinners I have to take because of the autoimmune disease. 

      I've begged for help from my neurologist, rheumatologist and GP, but I just get told 'sorry, there's nothing more we can do.' 

      It's very sad really when you think about it, no one with a heart would even leave an animal to suffer in pain. I think they should legalise euthanasia here in the UK.

       

    • Posted

      Thank you so much for replying! It definitely sucks to have to go through this and im so glad I'm not the only one with 'unusual' symtoms. Amitriptyline is working for me, so far. But I can always feel terrible constant pressure in my head. I can only take Tylenol as well, and need my doctor to do neuroligical exam every 3 months. Although I don't have a diagnosis, I will definitely bring this up to him. Thank you so much.

    • Posted

      I'm glad to see this thread is somewhat going still. My husband deals with migraines, and he can go months without one, then get them and it will last for a month or more. The medications and other thinhs he's tried (triptans, pain killers, natural remedies such as vitamin supplements, changes in diet, etc) offer no relief, at least nothing long term. MRIs, CAT scans, blood work, etc all come back normal.

      From my position, I have wondered if he is dealing with more anxiety/depression issues because he ends up shutting everyone out, goes from job to job and that often results in us suddenly moving. I understand how chronic pain can bring on depression, and I understand how he must feel not being able to function, but it seems that there are deeper issues. I'm not suggesting anyone on here is dealing with that. Quite the contrary. I'm wondering if I could be wrong, if it would be typical of a person with chronic pain to handle it in such a way? Do those of you suffering daily hit points for long periods of time where you not only can't function but basically stop life?

    • Posted

      Hi,

      Well I can vouch for the fact that chronic pain and depression DO go hand in hand.  If you can get no relief from the pain then certainly its very depressing.

      Its interesting that you say your husband gets these headaches for a month or so and then they go away.  This is typical of a headache called cluster headache and its because they come in clusters as the name suggests.  I used to get them like that, until I had continous headache, then I found that sumatriptan injection would take it away very quickly.  I wonder if your husband has tried the injection version as the tablets didnt work for me.  Then to help control them Verapamil is a good choice.

      Do let me know how you get on as its always possible what your husband finds works for him, might help me and others too. 

      Take care and best wishes

  • Posted

    Hi all, worth asking if you can try indometacin for pain relief- its an old strong anti inflammatory often used for gout. There are a whole suite of indometacin responsive migraines incl hemicrania continua which I suspect is my brand.

    Also worth checking any synch with your cycle? Mine are def worse when progesterone dips, I've just started HRT and have to smooth the progesterone days- last stop triggered a 5 day in bed all day migraine!

    Any other stressors on your brain or body also worth looking into incl weather!

    Good luck

  • Posted

    since you are having chronic HA do you know if you have a strong family h/o brain aneurysm?

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.