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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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  • corinne1978
    corinne1978 Becky-Louise

    Posted

    Hi Becky-Louise,

    I am going on week 3 of migraines/headaches.  Although it hasn't been as long as you, I feel your pain.  I have had the MRI and some blood tests and everything is normal.  I have been trying to stay positive in the fact that they haven't found anything thing serious but have been frustrated they haven't found anything.  Try and stay positive and maybe try a homeopathic way?

    • Becky-Louise
      Becky-Louise corinne1978

      Posted

      Aha, tell me about it. On of the GPs I saw at my local doctors, kept telling me (while I'm sat crying my eyes out in pain) that I should "think myself lucky" and "well, what is the big problem? it's not a brain tumour!" Never felt so angry and patronised in my life. 

      but yeah, try stay positive, not gonna lie it's very difficult especially once you start getting into months not weeks. But they will eventually find something to help, or something to stop it all together.

      have you tried a chiropractor? I saw one and although it didn't help my migraines, I felt better within myself. My posture felt a lot better and I didn't feel as though my neck was stiffenin up as much which can make my migraines worth, if definitely suggest it.

    • corinne1978
      corinne1978 Becky-Louise

      Posted

      I can understand the weeks and months sad....I haven't tried a chiropractor recently but I've been doing yoga and pilates but I've been so tired afterwards. Have you tried acupuncture? I haven't been in a while because that would mean I'd have to drive on the highway and well I have vision problems with mine so avoiding driving long distances. But they have worked in the past for minor headaches. You should try that even if you don't like needles. After awhile you literally just fall asleep! Good luck with your blood tests results. I should get mine hopefully Monday. Oh also I heard magnesium ☺️
    • Becky-Louise
      Becky-Louise corinne1978

      Posted

      Hey,

      I was put on a waiting list for acupuncture by my pain management clinic I was referred too, but I haven't heard from them in months. Apparently I was 4th in the list rolleyes don't know what's happening with that.

      Could you not get someone else to drive you, especially since it worked with minor headaches, should try and see if someone can. 

      Yeah good luck with your blood test too, hope it can shed some light on the situation. smile

       

    • corinne1978
      corinne1978 Becky-Louise

      Posted

      Thank you. My aunt once told me ' The only advocate you have for you is YOU'.  Not sure of your personality but I would be calling weekly! Lol. Which is what I'm doing with my neurologist. I don't have an appointment with her until the end of May :o! 
  • Angela8888
    Angela8888 Becky-Louise

    Posted

    Becky-Louise, Girl is is so comforting to know I'm not the only one about to put a gun to my head just to get out of pain....FINALLY after a year!!!! I have done every medical test known to man just like you! Today has been my worst ever in my life! I have never suffered from migraines! But for the past year I will wake up with one...suffer with it ALL DAY LONG...go to sleep and wake up with it again! I'm a very positive person but I'm at my breaking point! I've run out of options for the cause or the cures and I am a nurse! I totally feel ya! I have suffered through so many pains in my lifetime but nothing compares to this!!! I have had 4 broken ribs, almost had my whole arm cut off in a car accident, I could go on and on! But the fact of the matter is that today I read your message and have told my loved ones that I would sincerely blow my brains out if I had a gun just to be out of pain for once!!!! I just want you to know that you are absolutely not alone! And it makes me feel better that i have someone who totally understands too! God Bless you, Girl! This can't last forever for us so I'm just trying to stay positive and have faith! But today it finally broke me!!!! Big Hug, Girl! I will be praying for you too! <3>
    • Becky-Louise
      Becky-Louise Angela8888

      Posted

      Hi there,

      I'm so sorry to hear your goin through the same thing, it's terrible. It's no life and unless your going through it, no one understands.

      I saw my neurologist the other weekend, and for the first time in the 9+ months I've been seeing her about the migraines, she's finally clicked on to how depressed I am and how little quality of life I have since January 2013. Not that she did much rolleyes

      It may sound stupid to most people but what I keep telling myself is to live trough my pain. No matter how much pain I'm in, if my friends are making plans then I will show up, even if just for an hour, so that I'm having some sort of life.

      I really hope you feel better soon and they find something to help/get rid of your migraines. If you ever need to talk smile

       

    • sophie00919
      sophie00919 Becky-Louise

      Posted

      Hi Becky,

      Sorry to see you're still struggling, and that others that have been posting are too. It's hard to believe so many people are going through this, yet it's so difficult to find something that helps. Your comments about still socialising with friends really resonated with me. I should really take a leaf out of your book as I have responded in the opposite way, I tend to steer clear of social events. Until now I just haven't wanted people to see me not at my best, but think it may be time to take your approach smile

      Just wanted to share a couple of things in case it may help you. I have decided to get my neck properly looked at in case the problem lies there. I have read a lot about neck headaches being misdiagnosed as migraine. Though at the same time I'm not pinning too many hopes on it. I have seen physios and chiropractors but have now asked my GP to refer me to the orthapeadic dept, in the hope they will scan my neck (already had brain MRI and CT, which were all clear).

      The other thing I am considering is referral to a sleep clinic. I have a friend that has been visiting one who has chatted to them about my situation. They said it is definitely worth my visiting one as chronic migraine can often be attributed to some form of sleep disorder. I am aware that I have started clenching my teeth in my sleep since all this started. As I have tried to fix this already by getting a night bight guard, I should apparently have grounds for an NHS referral.

      Anyway just thought these things were worth sharing.

      All the best.

      Sophie. smile

  • Scousetwat
    Scousetwat Becky-Louise

    Posted

    Well I've been scanning everywhere online to find answers to my headaches I've had for nearly 5months. Been tarred with the same brush , you just have headaches, try these drugs, don't work. Oh you must have a tension headache try these drugs, don't work , you may have cluster headaches , try these drugs.... So far I've had , anti depressants, beta blockers, sleeping pills , pain killers with anti inflammatory and a drug to combat that drug to keep stomach settled. No fix. At one point my doc had me on amytriptaline , naproxen, amperazole and epilepsy drug topirimate ( Topamax ) . At this point is had enough. Neurologist said I need to be on Topamax for 8 weeks to be able to change the brain signals to combat the pain, well it did - all it was doing was just shunting the pain all over my head instead of the original point it was, at the back of my head. I've kept complaining to doc & neurologist that I struggle to concentrate like brain fog esque feeling. I realised when I went cold turkey and ditched the drugs the Pain got really bad for few days but it eased off a bit - but in those few days I started to think better , a lot clearer- pain still at back of head but mentally/ cognitively better . So I started to google the drugs I was fed, it lead me to that nasty bugger Topamax - one of the biggest side affects is concentration / brain fog!! As it's an epilepsy drug people who are epileptic are prepared to live with that side affect as it's far better than a seizure. I don't have that issue and it was darn right screwing up my mind mentally . 

    Mri scan came up clear but my faith in my gp , he doesn't seem to want to think outside the box or entertain any other poss cause to my pain. All he said on the phone on Friday was basically stick with the drugs as it's just a headache. Well I'm not prepared to ram more useless drugs down my neck for over 4 months mow with now improvement. I'm certainly not accepting this patch over repair ( if u can call it that ! ) for the rest of my life. My shiatsu massage bloke I use has taken way more time and care into my problem and he has spoke. To a few medical professionals and suggested to them what I may be suffering with, chiari malformation. He came to this after he said I ticked 90% of the symptoms associated with this problem.  Now going to request my MRI scan pictures as I have seen enough online to know what I need to look for on my MRI pictures. If I find this to be the case I'm going to be giving my hospital some serious words. May even go further. Ranting / frustration aside , I'm posting up to give another possible angle to head pain sufferers, I'm hoping that if I do have chiari malformation it's only type zero as the others are really not good , op's tend to not be successful and yield more post op complications. I just want my life back now . Can't do gym, downhill mountain bike , even motorbike journeys are short, daren't do a trackday on my bike yet. Laughing hurts , even chewing food at times ramps up pain at back of my head. Lost over 5kgs of weight and I wasn't big to start with (6ft, 29 waist ) 

  • Scousetwat
    Scousetwat Becky-Louise

    Posted

    Oh I have tried lots of food cut outs to see if that was the cause of pain, they say fruits can do this , luckily no food does this to me. But upon lots of online research I've found I'm severely gluten intolerant ! Stumbled across coeliacs disease with headaches - once again didn't trust nhs hospitals when I asked to be tested , as you can get a LOT of false negative results . No one case of coeliacs disease is the same apparently and you have to find a good doc who understands this illness to get diagnosed . Endoscopys used to be the gold level of testing for this but it has turned out to be majorly flawed testing method . Didn't cure my headaches but by heck it's cured A LOT of my stomach issues, not had an ulcer in my mouth since and I was getting them regularly. I'm putting that fine to my stomach recovering ft gluten poisoning and bring able to absorb nutrients better. 
  • psych1rn
    psych1rn Becky-Louise

    Posted

    Today makes day number 9 for this horrific migraine.  I saw my Neurologist today, and received Toradol and Decadron injection.  I will start a medrol dose pack in the morning.  My MD informed me that the migraine is a result of inflammation, hence the Medrol.  I pray this works.  I have taken everything possible.  Tylenol, Excedrin Migraine, Flexeril, Fiorecet, Magnesium, using my TENS unit, Xanax....you name it.  From following this post, I see where a lot of people say cheese triggers it.  I have been on a no carb high protein diet.  I actually have been consuming a LOT of cheese, but this started after almost a month after limiting carbs.

    i am at my wits end.  If this one has not been relieved by Friday, further testing will be done.  I stopped having migraines over 8 years ago.  WTH??  I am glad I found this blog.  Nice to know others out there are understanding about this crap!

  • patricia_82161
    patricia_82161 Becky-Louise

    Posted

    Hello, everyone. Well, it is now week 8 of these daily debilitating headaches. I continue to discover new foods to avoid: soy, dairy, cheese are the most recent. I am thinking about trying the gluten-free idea. Have an appt this thursday with a holistic doctor to try to put this all together. All I can say is I try to enjoy each day the best I can. Some days are better than others, but thankfully there is nothing seriously wrong like a tumor. I empathize with everyone and thanks for sharing all the ideas. Never heard of the honey treatment. I personally prefer to avoid prescription meds since my body even more sensitive these days. I do believe we are what we eat and what we think and learning to meditate to be more aware of my thoughts. Dwelling on the negative only produces more of the same. Here

    s to a healthy future for all of us and keep looking up!

  • rashid11851829
    rashid11851829 Becky-Louise

    Posted

    Hey i have same problem since last year doc has tried so many things but no effect had ct scan it was normal doc sed its chronic headach but my headach is not going anywhere u tell anything better from u
  • m67325
    m67325 Becky-Louise

    Posted

    Becky-Louise- I'm sorry to hear of your troubles. My migraines started when I was 20 but at the time I believed they were tension headaches and a host of other random doctor diagnosis which lead to what sounds like a similar experience you are starting to have meaning the "running in circles" problem. Skipping a lot of detail I am going to fast forward many years and say that I have one of the top ranked neurologist in the US and his care is excellent. There is always something that triggers migraines and it's a long process trying to figure them out especially when you have the migraines non-stop. For this you need to start a daily detailed journal and watch out for trending. 1) What did you eat? Not just chocolate but what's in the chocolate. Not the caffeine but what else is in the drink, in the food, etc. start tracking chemicals, preservatives, ingredients, ect. 2) what was the weather like, what was the berrometoric temp. that day /morning noon night? Ect. 3) since they are non stop scale the severity 1-10 and track when the severity change. Migraines are cyclical so the first trick is to break the continuos chain. Then you can slowly impact them to a couple times a week then months etc. hopefully if it goes well. If unchecked my return to daily non-stop rather quickly. Another problem is lack of sleep trigger migraines but migraines interrupt sleep so that's a cycle you need to break as well. I tried everything including sleep studies. Now I have a concocksion of high dose sleep meds. Link ambien and muscle relaxers. Taken a few days in a row should help you start breaking the sleep issue temp. but enough to interrupt the sleep impact on the headaches. Take a week holiday from life to get this done. Scientists are also discovering that vitamin D level deficiencies may cause or encourage migraines. I had my levels checked and sure enough I was almost at a level where my body would stop processing correctly at all. It was almost too late. Quick and easy solution though. It didn't cure the migraines but my frequency and severity did decrease. I also get Botoxin every 3mo which doesn't really stop the migraines, it relieves the pain when I do get them so it's not as debilitating and I can still function. People often confuse other headaches as migraines but when I truly have debilitating migraines I can't walk, talk, no balance or coordination, nautilus, thinking and processing information mentally is out of the question, even bodily functions can sometimes be impacted. It's way more than just debilitating pain. There is a lot more I would like to share with you and more detail but it would have to be through pm to avoid public details. I wish you luck, I know you are in a rough spot and the situation alone is depressing and stressful. Hang in there though it is possible to break the long term cycle and get part of your life back. Oh, and I'm a male so I think it's time for the general practitioners to change the "it's a female thing" mentality. I think it's tied to way more than that. Overall I think the medical field is still working on understanding the brain and our bodies. With migraines, symptoms and triggers, intend to believe a lot of people confuse which came first, the chicken or the eggs kind of thing. Good luck. -M
    • Becky-Louise
      Becky-Louise m67325

      Posted

      Hi ,

      Thanks for the advice. I will definitely start the diaries, if was recommended to me before but I wasn't completely sure what to look for since my migraines are 24/7, so that's helped a lot.

      My neurologist is pretty useless sometimes, I've asked for my vitamin D levels to be checked and she said she doesn't find it necessary, so I'm just going to keep pestering her about it. Usually I would ask my regular GP but they won't interfere with anything being handled by a specialist.

      Yeah I usually find my sleep interrupted and then I'm exhausted during the day, yet still can't get a decent nights sleep. Think I will have to try some tablets to help my sleep, but I'm worried they will make me too groggy. But gotta give it a try otherwise I won't know.

      Appreciate your help, hope your migraines continue to get better!

      Becky

    • Saint_B
      Saint_B Becky-Louise

      Posted

      Becky, I can't believe they won't check your vitamin D levels! Since mine were discovered as low and I started supplementing, I have been all but headache free—about a month and a half now! Which is beyond amazing to me after over a year of suffering and trying so many prescriptions and all sorts of alternative therapies. And there's a link between the Vitamin D helping you sleep, which helps your body repair itself.... Perhaps you could try supplementing to see what happens? My doc says 400 IU max daily (just FYI, as a guideline). It may not be your magic solution, but perhaps worth exploring. All best to you in your search for relief.
    • Becky-Louise
      Becky-Louise Saint_B

      Posted

      Yeah I think I might just start and see what happens, it can't hurt really.

      But yeah, I've asked a few times now and she wouldn't do it. Should be seeing her again sometime this month, but might try my regular GP again first.

      It's stupid how the doctors can't communicate with each other enough for my GP to feel confident enough just to test my levels. Don't know if that's just my doctors!

      Oh my, what I wouldn't give to be headache free. I'm so happy for you! Glad you've finally got it sorted.

      So do you have to keep supplementing all the time now or just enough to get your levels right? Would it keep dropping again?

      Becky

    • jamie1208
      jamie1208 Saint_B

      Posted

      Hi Saint B

      I was just reading your post on Vitamin D, mine was never checked either despite the tonns of blood tests I had that checked for everything else. Without sounding silly, Vitamin D is a source one gets from the sun? I suffer from SAD during winter, I get very low without sun & seem surprisingly healthy abroad, my headache cyle was broken for 5 weeks while away.. its made me wonder if i have a defciany? Curretnly taking Vit B2 as I heard it helps reduce headaches. I know this sounds extreme but I've been so down with it all & sun seems to be so healing for me that I've sublet my flat in London & convinced my partner to move with me to spain for 3months, rented a flat on the beach with all our savings & dedicated that time to eachother & getting better with a change of lifestyle, weather, foods, anything different from this.

    • Saint_B
      Saint_B Becky-Louise

      Posted

      Becky-Louise, I'm sorry it's been so long since I checked in—and that you are still suffering. I will still reply here, in case it helps someone else...

      You do have to keep supplementing. I actually scaled back a bit in the summer, as I was outside a lot, and then when fall came, my headache started to creep back in. I realized what was happening and added in the D I had dropped over the summer, and was back to normal within a few days.

      I honestly still can't believe that after all i went through, all I needed in the end was to supplement with D.

      Best of luck!

       

    • Saint_B
      Saint_B jamie1208

      Posted

      Jamie1208, So sorry I did not see this earlier. In case it helps, you or someone else reading, Vitamin D IS something you get from the sun (if you don't wear suncreen everyday, that is). I hope you tried supplementing with D, and, most importantly, that it helped. I know it's not the solution for all here suffering from migraines, but it was certainly (and surprisingly) the "magic" solution for me—so could be for others. After a year of suffering, MRI, pills, acupuncture, chiropractic, days missed monthly and then weekly due to awful pain, the fact that all I needed to do was take vitamin D daily still floors me.

       

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