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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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  • Tobamory
    Tobamory Becky-Louise

    Posted

    So lets talk about that angle then

    Air Purifiers, anybody tried the proper good ones from IQ Air i find i wake with a thinck head, i also sometimes have 1 blokced sinus, is this a sign of dirty air ?

  • davie94661
    davie94661 Becky-Louise

    Posted

    Your post could have been written by my wife, your condition mirrors my wifes condition to the letter, when i read her this post she cried ,finding someone with the same horrable and debilitating sickness as her has gave her a little bit of hope. my wife is 48 she has had this for 4 years but the last 7 months has been 24/7 constant pain nausea anxiety depression partial blindness (aura), I dont know if you share the bouts of shaking and burning sensations on the body also.?.i was so glad when i found this post because we were desparate to find out what was wrong,she also  thinks her doctor does not believe her situation, i have found more information myself than her GP, I have so many questions i would like to ask you but i'm just glad she knows she is not alone with this evil affliction that has unfairly changed both your lifes. I see what you have to go through and it breaks my heart. We would both love to hear from you, x 
    • Becky-Louise
      Becky-Louise davie94661

      Posted

      Hi there,

      I'm so sorry to hear about your wife's suffering, it's horrible to feel like this.

      I'm glad she has you to understand how she's feeling though, and has someone to go through it with.

      Has she tried either Maxalt or Imigran?

      These aren't long term, but they can help with the bad migraines.

      Mine tend to vary on pain levels. I wake up and go to bed with it, but when I take one of these tablets, my pain level is lower than usual. I can at least function, and get in with my work.

      Unfortunately I can't tell you about a long term solution I've found.

      I've tried nearly everything my neurologist can think of.

      CT, MRI, lumbar puncture,Botox, various tablets from antidepressants to anti epileptic drugs.

      No help from any of them.

      What have they tried for her migraines? Has she had an up to date MRI or CT since they e become constant?

  • cattaps
    cattaps Becky-Louise

    Posted

    I, too, have daily migraines. I am at the point my entire body goes into wild tremors when the migraines hit a certain pain level, so I can't rest.   I went through 11 neurologists who gave me the same medicines over and over (with a few new ones) and when those didn't work, and the MRI's/CTScans didn't show anything, they started to experiment with drugs and methods they had not tried on any other patient.  I was the first person to have Botox used as a treatment for migraines, as well.  I was desperate.  When asked by a physician, "How often do you have your migraines?" I tell him/her the better question is "How often during a year do you not have a migraine?"  The answer is 2 days out of 365. 

    I am on my 11th neurologist, now, trying the Botox again, because the first treatment was not believed to have been administered correctly.  I am scared.  As my migraines have continued, I have also developed dangerous allergic reactions to even common prescribed medicines and definitely over the counter medicines. 

    We are also purposing what everyone else has done-dietary changes, physical fitness improvements, tons of psychological methods...none have worked. 

    I found your message when I typed in my search engine "I have migraines everyday and I wish I would die already."  But after reading your and other's fight with this same malady...I feel stronger.  I have been a guinea pig for migraine research, told to my face by 9 neurologists (other were too chicken, I think) there was nothing else they could do for me, I spent a month at Mayo Clinic and even they told me there was nothing they could do for me.

    Sorry, I went back to my migraine troubles.  I was saying reading these other messages and yours, Becky-Lousie, where ever you are...and where ever you others are...have changed my mind about the dying part.  Even with the light of my pc searing into my eyes and increasing my pain even more...I feel ready to fight more.  I feel foolish for even adding the "dying" part. 

    Don't give up, people.  In the last 12 years, I have had 16 days without migraines.  Most of them due to being in post-op for non related migraine reasons.  If I won't give up, you don't give up either.  I wish you all the best and thank you, Becky-Louise.  You are in pain, yes, but you somehow have given this US Midwestern woman hope.

     

    • StevenRose
      StevenRose cattaps

      Posted

      Hi,

      I may be suggesting things you have already tried, so forgive me if thats the case, but have you tried Flunarizine and multiple cranial nerve block injections?

      Support if nothing else is available here.

      Take care

  • haleighdarice
    haleighdarice Becky-Louise

    Posted

    I'm 14 and I understand completely. I cannot get a break, I used to go to the hospital and get shots and tons of meds to get them under control but my mom's insurance changed and we can no longer afford those bills. I honestly know you are NOT exaggerating. It never goes away! I'm lying here with a cold wash rag on my head at this very moment. Sometimes it's hard for me to even keep my eyes open. This is a very huge problem because I am currently doing school online in my attempt to catch up and I absolutely cannot stand to stare at the computer. I've tried everything and now I'm desperate. My neurologist blew it off about 4 years ago saying it was due to hormonal changes. That's obviously not right, they still cannot find put what is exactly wrong. I had a Lumbar Puncture done and my pressure happened to be really high. That might be the cause of all of this. 
    • StevenRose
      StevenRose haleighdarice

      Posted

      Hi

      Did you have a MRI brain scan yet?  Although if the lumber puncture was not right they should be able to work out whats wrong.

      Good luck and please update us on here.

      You are not alone with all your problems, we support each other!

      Take care

    • haleighdarice
      haleighdarice StevenRose

      Posted

      Yes, I have had about 2-3 in the past. It's been a while since then. And thank you so very much for your support. 
    • StevenRose
      StevenRose haleighdarice

      Posted

      You are very welcome!  You know you are not alone in various migraine conditions.

      Can you get hold of a product called Imigran epipen injections.  I have to use these myself as nothing else will take the pains away.

      You really need a neurologist that is not ignorant basically.

      I totally understand how you feel, I get bad times too!

      You need the right meds to prevent them in the first place, a good neurologist will do that, but if you cant get to see one, your own dr if he is understanding of course can prescribe meds that are known preventative, these include, verapamil, gabapentin, pregabalin.

      Let us know how you get on and good luck.

      Take care

    • haleighdarice
      haleighdarice StevenRose

      Posted

      Mom is very very busy, she works two jobs but I will try to get her to find a neurologist soon. Hopefully they will take the time to figure out what is wrong. I will mention those injections to her. She is a nurse so I'm sure she will understand what I'm talking about. 
    • StevenRose
      StevenRose haleighdarice

      Posted

      It must be really tough for you, trying to study with these awful headaches! Do keep in touch to let me know how you are getting on, anything I can do to help I will if I can.

      We all have horrific stories to tell on here how heacahes in one form of another have blighted our lives, so you can be sure we support and understand where you are coming from.

      Of course we all have our own sittuations and life, but yours is particularly tough!  But try to hang in there and I know thats easy for me to say, but I am sure you will find a sollution. When they were trying to find the right meds for me, I had to take steroids (not banned ones) They really helped me!

      Good luck and remember support is here for you!

      Take care

  • gl19
    gl19 Becky-Louise

    Posted

    Hey Becky,

    Basically like most people on here I have a similar situation like yours. I'm 18 and have been having chronic migraines every day for the past year, 24/7. However, for me I have feeling that stress has a lot to do with my migraines and probably the main reason why they started. I can literally feel tension in my shoulders and neck and I know an essential oil sometimes helps reduce the pain. I don't use lavender or mint but a essential oil called tei fu. It may be a bit pricey but it works wonders temporarily for when you can't get up from bed. Also doing yoga stretches for neck and the rest of your body helps too. As for medication, I have a feeling most of them don't work unless you go to the hospital itself and they put you on an IV to temporarily relieve the pain. Another thing that might be worth a try is bio feed back; although, I haven't tried it...yet I head that it can help to maybe control your mind in a way to lessen the pain. Also it's amazing how you're working and going to uni at the same time with the migraines. I had to drop out of highschool and continue on in homeschooling becuase I couldn't handle it anymore. I would love it if you could give me some pointers on how you manage your work and classes. 

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  • charlotte99747
    charlotte99747 Becky-Louise

    Posted

    Hi becky. 

    I am in a similar situation to you. 

    I'm 24 and I have been having the worst migraines every day for almost a year now. I have lost count of the amount of times I've been to my doctor for help!! I have been prescribed everything from topiramate, codene, Dyclofenac, beta blockers, tramadol, antibiotics, nasal spray, and many more, and no relief from any of these tablets. I have had a ct scan which showed up some infection in my sinuses which was treated but the headaches still remain. Even my neurologist was at a loss as he didn't know what to suggest!

    I too am at the point where I am feeling so low and depressed and however sick thIs sounds, was kind of annoyed that the ct scan didn't show more as the not knowing what's wrong is at times worse!! 

    I have cried to my doctor many times now and told him that it is not normal to feel like this every day of my life. 

    Please help everybody!!x

    • StevenRose
      StevenRose charlotte99747

      Posted

      Hi Charlotte,

      Goodness you are having a rough time, sorry to hear that!

      Firstly I will say that some of the drugs you have been taking will make the migraine worse over time rather than better, like codiene, tramadol as these are opiod drugs and have a negative effect, I know this through my own research and from my neurologist,

      If course its natural that when they do tests you want them to find something for them they say, if we give you this medcicne all will ne ok, but with migraines its not that easy sadly,

      I would suggest you ask for a deatiled mri scan though, this is different to a ct scan,  Also suggest to your neurologist you try imigran injections, (surprised he not offered them before), these are the gold standard of abortive treatment for all migraines and suggest you try a combination of verapamil and pregabalin,  You may have to go to a dose of 120,g 3x a day of verapamil and 259mg 2x a day to get relief, but he will start you off on lower doses first.

      Good luck Charlotte, I am sure you will get on top of the migraines before long,

      Keep me updated please as you are please.

      Take care

    • charlotte99747
      charlotte99747 StevenRose

      Posted

      Good morning and thank you so much for your reply and your help. 

      From my last visit to my doctor last Wednesday I was prescribed antibiotics in case of a sinus infection, pregabalin and some laxatives as taking all of this medication for so long is really irritating my tummy (sorry !). This is my 6th day on these tablets and again no ease to my head at all. 

      I am going to take your advice and go back and request the MRI as I am struggling to keep this up now. I'm at the point where I'm having to take time off work and that is something I've never done or wanted to do. I can't sleep at night and I need some relief. 

      Again, thank you so much for your help, I really appreciate you taking time out to do that and I will definitely keep you updated x

    • StevenRose
      StevenRose charlotte99747

      Posted

      welcome Charlotte and good luck with the MRI.

      No need for sorry I totally understand I have been in that place where you are so deperate and dont know what to do!

      Good luck and anytime, just send a message for full support and understanding!

      Take care

    • StevenRose
      StevenRose charlotte99747

      Posted

      Hi Charlotte,

      Just wondered how you are doing now?

      Is anything working for you.

      Best of luck

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