Miserable!

Hi I’m Shona I’m 39 and I’m new here. I live in Scotland but have been enjoying reading your stories. Your site seems more helpful than the ones I’ve been looking at.

Anyway I have suffered migraine with and without aura for over 8 years now. The first time was a Saturday the most excruciating pain sickness and dizziness this lasted 2 days and on the Monday I was pain free but exhausted. This happened again the next 2 weekends so I went to the doctors before it happened again thinking I was going crazy however he told me it was a migraine due to the release of stress my body slowing down. He prescribed sumatriptan and again Saturday came and so did a migraine the sumatriptan worked but the migraine came back so I had to go on stronger dose. I was going through a stressful time at that point.

Eventually the migraines became more frequent and I found more triggers. Spicy food, bright glare, perfume air, fresheners, car headlights, torches, periods, many things. I was then put on amitriptyline then pizotifen, propranol, atenolol and now topirimate which is the best ever 125mg twice daily the others all had bad side effects and didn’t help my migraines at all. I’ve been on topirimate for 4 years now and it dramatically reduced the severity of my attacks until lately I’ve had an ongoing migraine for almost 3 weeks now it’s not a debilitating one some days are worse than others but I can get out of bed most days. My doctor has signed me off work. I’m on week 2 out of 3 but I’m still suffering. She referred me to a neurologist for the first time. His words were it’s a migraine I’m sorry I don’t have a magic pill to give you I know it’s miserable but it will pass. So yes I’m feeling pretty miserable at the moment!  The worst thing is my migraines have changed I now get numbness in my left side and blindness in my left eye.

Anyway I’m sorry for moaning! I just wanted to let it out! I’ve also passed on my migraine gene it seems to 2 of my 3 teenage boys so far let’s hope theirs are “hormonal” and they will outgrow them! It’s good to know that there are people out there who understand what we are going through though. And it’s good to read others experiences. No matter what though.. There’s always someone worse off than yourself x

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Comments

View Comments (8)
  • Shonabrunton author
    5 years ago

    Wow, thank you al so much for your input! It’s given me lots to look into and try and discuss with my doctor. Had a very bad few days. Next step for now is to try sleeping tablet Zopiclone see if we can break the cycle that way headache wakes me after an hour or so.. Lack of sleep makes it worse so catch 22 so going to try a few days only as they were the last thing I wanted to try! However at the end of my tether now and in need of a a sleep! I am so very grateful and touched by all your comments and ideas. I will go throu each one and look into then and see if would be of help to me. Will defo be in touch soon and keep up to date as to how it’s going. Thank you all so much again x

  • Laura
    5 years ago

    I’ve read that there’s a correlation with genetics – what happens though if you’re the ‘first in line’? Was that the case with you?

  • stephanie
    5 years ago

    Ask about inpatient DHE IV treatments.

  • MissMary
    5 years ago

    Ask your neurologist about a steroid pack (Prednisone) for migraines that continue for weeks. This has always worked to finally break a long migraine streak. Good luck!!

  • Dori Fritzinger
    5 years ago

    Welcome Shona – I am glad you joined. Not happy you have migraines – but glad you found this site.

    I have been so enlighten by the information here.

    I have F(H)M 2 – My migraines last days and many times have stroke-like symptoms. I also struggle with the serious seizures that also come along.

    My daughter and grand-daughter also suffer with migraines with one sided numbness.

  • MigraineSal
    5 years ago

    Hi Shona

    So sorry to read of the terrible time you have had and I am sure you will find being referred to a neurologist will really help.

    I have been very fortunate, compared to a lot of people on this site in that I didn’t start with my first migraine until 2 July 2013 . . . I was lucky enough to attend a migraine / headache workshop in August and the excellent Neurologist who was hosting the event suggested that I ask my GP to refer me to his migraine clinic. Thank goodness he did because what a difference he has made to my life. Like you I am on Topiramate but a much smaller dose, as I didn’t like the side effects and I was fortunate that my migraines and headaches improved enough for me to remain on a low dose, albeit with a few headaches but I prefer this to the side effects of a higher dose.

    I had a head MRI which was clear but it did show that I had a lot of wear and tear in my neck so I was referred for a cervical spine MRI . . . I was again very fortunate in that the Migraine Clinic is through a private hospital, rather than the good old NHS and my MRI’s were unbelievably quick. I picked up a letter from the Consultant to my GP tonight as I have an Occupational Health review tomorrow and I needed the formal diagnosis which is New Onset Daily Headaches – Cervical Spondylotic Disease. The reason I have given my diagnosis is because my neck problem has been causing my headaches / migraines and I am now looking forward to being able to help ease these even more with physiotherapy and good neck care. I had problems with numbness in my left side in August this year, in particular my face / shoulder and arm and I was admitted to hospital with stroke like symptoms. Thankfully rather than having a stroke and the consequential health implications this brings with it, I have quite severe degenerative changes to my cervical spine and entrapment of nerve roots with compression on my spinal cord. A few years ago I would have been devastated with this diagnosis at only 49 but compared to the stroke I thought I may have had this is good news and manageable.

    I really hope you get as good a result from your neurologist as I got from mine, knowing exactly what your problem is and that you are not going mad, or that it is all in your head is just what you need to boost your stamina to cope with debilitating migraines and headaches.

  • Gail Ross
    5 years ago

    Hi Shona, I live in Glasgow and found it very comforting reading your story.Its very similar to mine.After trying many different meds, I too have been on Topirimate and amitryptiline.Its a daily struggle dealing with the pain.However being a mum to 4 I push myself to give them as normal a life as I can.I manage to push through, put happy face on, underneath it all though I feel nobody really understands what a struggle it can be.

  • Nancy Harris Bonk moderator
    5 years ago

    Hi Shona,

    We are so glad you are here! Thank you so much for sharing your story with us. However, I’m sorry to hear your migraines seem to be worse at the moment.

    It’s not uncommon for migraine patterns and triggers to change over time. It is a good idea to keep a detailed migraine journal to see how what our triggers. With so many different apps out there today it is easier than every. Migraine.com has the Migraine Meter you can find here; https://migraine.com/migraine-meter/ or there are plenty of other apps available online.

    As far as passing our genes on, we all wish it wouldn’t happen. Unfortunately both my children have migraine disease. The numbers break down like this; when one parent has migraine their children have a 50% chance of having migraines. When both parents have migraine disease their children have a 75% chance of having migraine. We have information on children and migraine in this link; http://migraine.com/migraines-in-children-and-teens/.

    Let me share information with you on migraine management that should be very helpful; http://migraine.com/blog/migraine-management-essentials/. It may be helpful to see an expert who treats people with migraine and headache all day, every day- a headache disorder specialist. This information is from the Migraine Trust (http://www.migrainetrust.org/factsheet-migraine-clinics-10783)- Scotland Headache Clinics.

    Headache Clinic, Department of Neurology, Aberdeen Royal Infirmary, Foresterhill, Aberdeen, AB25 2ZN. Tel: 0845 456 6000
    Migraine Clinic, Institute of Neurological Sciences, Neurology Outpatients Department, Southern General Hospital, 1345 Govan Road, Glasgow, G51 4TF. Tel: 0141 201 1100 ext. 61983.

    We hope to hear more from you,

    Nancy

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