Just joined

I started with basilar migraines in 2011, on September 16 2015 this turned into chronic migraine with pain and symptoms all day every day. It flares up into really bad attacks which literally has me banging my head on the floor. I was off work for a long time, have gone back but it is a huge depressing struggle getting through every day. Also in danger of losing my job because I have had three absences in one year. If possible when I'm off work I try to pay back the hours rather than be put down as sickness absence. Was taking topiramate, now on propanol and having Botox injections in my head. GPs I have found to be very dismissive of the amount of pain you feel and symptoms.

7 Replies

oldestnewest
  • Hi I am sorry to hear how bad you feel my story is nearly identical to yours .it took a long time to get mine under control when I say under control I mean I still have symptoms mist days sensitivity to noise/light blocked ears runny nose different levels/types of head pain ..but I am much much much better than what I was.an antidepressant and a blood pressure tablet(I suffer from neither)has started to work for me ..it might be worth a mention.I was prescribed this from a neurologist

  • darthfleegle I know it is horrible but it may be still possible to improve your situation. May I ask you:

    1) Are you doing enough exercise? or Can you do? I know when you have horrible headache you really don't want to - but you have to (if you are not doing already) ! Light exercise such as 30m fast walking everyday can help, if you can't do jogging. Please do not try heavy things such as weight lifting etc. Exercise is excellent for migraine sufferers.

    2) Are you drinking plenty of water (non-sugar)? 2 to 3 litres water per day would be good. 2) Have you tried giving up all wheat products (food), alcohol, red meat, cheese and introducing lots of fruits and vegetables in your diet everyday? Even though it will be hard, please try not to eat processed meat, deep fried food and too much peanuts. Also exclude Salmon, Tuna and only eat white fish. Instead of white rice, try to eat brown (whole meal) rice.

    Drinking juice / squash is also not a good idea. If you cannot drink plain water at all, perhaps try coconut water (maximum 1 litre per day) as well as plain water.

    3) Are you going to bed before 11am? I know it is not always possible and even if you go to bed, you may not be able to sleep - but it is still very important! If topiramate is not working, please ask your doctor to prescribe Amitriptyline - this will certainly help with sleep.

    4) Try to spend in front of the computer as less as possible and also try not watching TV too much ! Listening music via headphone is not a great idea !

    I know you probably already are doing some of these and perhaps not doing a few of these - but please try above 4 steps (I concede it is easier said than done) and I strongly believe these should improve the condition.

  • Thank you for your suggestions. I have been trying to keep up with exercise but it triggers a bad attack. Even bought a wonder core as you can do exercises without moving your head.

  • darthfleegle Are you able to walk for 30m everyday? Please try this and I'm sure after a couple of weeks you will notice some improvement.

  • I have every sympathy for you. I agree that most GPs and some neurologists have no conception of the degree of suffering and disability in this kind of migraine. I don't know what the answer is. Triptans seem to work for many but I think they are contraindicated for Basilar migraine. I hope the Botox works for you. At least you have a proper diagnosis and are getting this treatment - more than many get although I know saying that doesn't really help!

    If you haven't already, you might try looking at your diet for triggers and getting tested for coeliac disease and B12 deficiency which can both have neurological symptoms including headache/migraine. You could cut out alcohol, sugar and caffeine (if you do this 'cold turkey' it will make migraine worse for a while - try gradually cutting down). Dairy can be a trigger for migraine. Some specialists recommend Magnesium supplements and B2.

    Regular sleep and gentle exercise are better than no exercise and irregular sleep.

  • Thank you for your comments, I hadn't heard of the first 2 you suggested.

  • I have had migraines since I was 8, I am now approaching my 25th birthday. My migraines cause me to go numb on one side of my body, have slurred speech, tunnel vision, nausea, sickness, confusion and a blinding headache that lasts for days. I lost one job and had to quit another,I have no friends and I have recently lost my boyfriend who has been my rock for nearly 10 years because I am unable to hold down a job through all my absences. I have been on every medication known to man and I am triggered by everything from partying to stress to sex to an all you can eat buffet. I also have depersonalization, serious anxiety and depression because of this whole mess, Unfortunately some of us are cursed with this and we just have to find something that can help relieve the pain. The only thing that I have tried and gives me some sort of relief is a medication called atenolol, I take two a night as a preventive and i don't have them as often, they haven't stopped but they are better. I hope that helps.

    I do have to say that my mum and my ex's mum were both prescribed propanolol and both have serious memory issues, similar to Alzheimer's, I have been on Atenolol for at least 5 years, they haven't cured me but they certainly help

You may also like...