Migraine with aura out of control, need some advice

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Hi all, I am hoping some of you might be able to give me some advice as I am pretty much at my wits end at the moment! I apologise for the wall of text.

I've suffered with migraines since I was about 12, but only got them once a year or so. I'm now 29 and they are completely out of control. It started getting worse around 4-5 years ago, with the last 2 years being pretty crappy.

I always get the aura before the migraine, I never have one without it. I literally have no idea what my triggers could be - I am fairly certain it isn't food or drink, so I have narrowed it down to menstrual migraines and stress/emotional/physical exertion.

I was on 10mg Amitriptyline and the mini pill (to control hormones) for about a year, and the frequency did decrease but the intensity didn't and it made me feel like a grumpy old woman so the doctor put me on 80mg of Propranolol.

I had a few side effects at first (nausea/dizziness) so was only taking 40mg a day, but then increased it to 80mg but since the change to Propranolol my migraines have been completely out of control!

I went back to my doctor who just suggested that I am on such a low dose that it isn't working and I am now on 160mg a day. I went back the next day unhappy as I had another migraine that night and I felt like the aura wasn't going away as I couldn't see properly and felt the Propranolol was making me feel worse/having a severe side effect but was pretty much told 'what do you want me to do?' (I was genuinely worried and not expecting the dose increase to work overnight)

My doctor will only refer me to a neurologist if my symptoms continue on this dose as well as after stopping the mini pill (so at least 2 months) Then I expect I will have to wait a long time for an appointment too.

I have been on some form of preventative medication for so long that I don't know how many attacks I would get without them, but they would always seem to be around the time I ovulate and I would get about 4-5 migraines.

On amitriptyline and the pill I actually only had an attack every 6-7 weeks. I have been on Propranolol since October last year and I have a migraine every 2-3 days, then a week without and then the last 2 weeks almost every day. They're really erratic, I feel like I could get one at any time.

Sometimes the pain is unbearable, but even when I can cope with it, the aura completely knocks me out and I can't do anything, so as you can imagine I have had a lot of time off work lately and it is not helping me at all because I am really stressed out about it.

If I try to man up and think, 't's just a headache I can do this!' I will get another aura and it makes the pain worse, like 2 migraines in one so I really do have to relax and get better, I can't just deal with it. Sometimes I cannot leave the bathroom as I will constantly be sick, I get quite bad vertigo with them occaisionally.

I try to think about triggers all the time (although the anxiety could be making it worse) so that I know I'm drinking enough water, giving myself a screen break, making sure I'm eating healthy, not too much coffee, take magnesium, get plenty of sleep, etc etc.

I think I'm trying all I can, but there must be some other things I can do? Does anyone else suffer like me? Is there anything that works really well for you? I am willing to try anything! I am thinking about getting a daith piercing tomorrow as I have heard it helps!

I have read a few posts on here and a lot of you have them so much worse than me so thank you for taking the time to read this.

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12 Replies

  • Posted

    Hi,

    well first of all nag your dr as they sometimes dont care too much about people who suffer from headaches.

    If you havent tried Sumatriptan already, I suggest you do as this could make a huge difference to you.  They do it in tablet, epipen injection and a nasal spray too, so see which works best for you.

    You really need to see a neuro and get an MRI as this will make a lot of difference too.  Sometimes the wait for one is not too long.

    Good luck and let us know how you get on.

    Take care and best wishes

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    • Posted

      Hi thanks for replying so quick! 

      I should have mentioned that before being put on preventative medicine I was prescribed sumatriptan and migraleve and both make me incredibly sick and don't do anything for the pain so I can't take them. I know they work wonders for a lot of people though.

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    • Posted

      Hi,

      Maybe if you didnt try the nasal spray version called Zolmitriptan this would be better as it doesnt go in your stomach.  Of course the epipen is just injected so of course that doesnt go in stomach either.  If you have tried these versions too, I am sorry to go on.  Just trying to help

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  • Posted

    Sorry to hear your struggle. I get Auras too, not every time. Mine strated with hormonal change. They worsened with triptans. I was put on Midrin to take when an aura hit, they have worked greatly for me. IT is an old school medicines, come in generic, and is cheap, not many doctors prescribe it. I was classified in complex migraines or hemipla legit migraines. MY main triggers are florescent lighting. WHich is everywhere. I had to change my glasses from a bifocal, to single lense, add a prison and add a tint (the ones like transitional light changing). I also have to wear a ball cap into all stores, doctors offiCES ect and on sunny days. Also for me when the weather shifts drastically it triggers one. AND when the barometric pressure drops below 31 I'll get hit with one.

    Those are some things that have helped me. With hemiplegia migraines triptans and considered a no no, they increade my stroke risk, as does hormonal pills

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  • Posted

    I'm so sorry you are suffering and so young too. My Dr and I didn't realize I can't handle an adult dose of things. Leave alone after a week or two increasing because they think they know everything. A doctor that uses blackmail on his patience and not referring you until you've been on a certain medication for so long is worth dropping and Reporting. I use a very small dose of Neurontin because the pediatric dose was still too high. I'm very sensitive to these types of medications. Migraines are not always about triggers that's why we see neurologists for them. Because my current neurologists also doesn't believe my low dose would cause any side effects or even work I too am in the process of changing to a doctor that will work with me and my delicate system. I've put in a call to my psychiatrist because they study those medications also ask him if I might be better off working with him. I don't have answers for you but I do know doctors don't have all the answers either. For me I've kept journals and I use migraine buddy, a free download off the Google site to track things. I know weather affect mine, and you clearly have hormonal changes. But if the higher dose isn't working for you stay with a lower dose and talk to your gynecologist or whoever does your hormonal changes. I hope this helps if nothing else you know somebody out here understands. Keep shopping for the doctor that's right for you.

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    • Posted

      I can understand why my GP is doing it, if they refer me to a neurologist without trying all avenues of other treatments it will make it harder for them to try and find something that will work for me. It's just frustrating as migraines are so debilitating. 

      One theory I had was trapped nerves in my neck or something like that, the amitriptyline worked quite well and I had scoliosis as a child which has been surgically corrected but I have a slight curve at the top of my spine. Maybe there is a nerve there that is causing them. Very far fetched but it could piterally be anything!

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  • Posted

    Do you have any auto immune disease in your family?? I had this type of migraine but thankfully under control now. X
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    • Posted

      Lots of them...Lupus Sjogren's Behcet's (which I have) but others too. If you have other health issues seemingly unrelated it may be worth exploring that area.

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    • Posted

      Yes do. It is not always an obvious answer but aura was so bad for me as was neck pain. I have only mentioned some auto immune isdues but there are many.
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  • Posted

    I just wanted to update everyone as it may help someone else. Today I have finally had a migraine free day. It's been 2 weeks! I stopped taking the mini pill around 4 days ago and (sorry for TMI) this morning noticed I had spotted a little. I got my daith pierced today and have now been on 160mg of propranolol for a week (I have been taking lower doses for 3 months) 

    I now believe that my migraines are 100% hormone related, the propranolol had little or no effect other than making me feel drugged. 

    The only thing I find odd is I started taking the mini pill as a means of controlling my hormones and stopping my periods and hopefully the menstrual migraines, it certainly worked well with amitriptyline. It was almost as if me taking the pill was keeping my hormones at an 'ovulation' level as that is usually when I would have a migraine. 

    Does anyone here have any advice regarding menstrual migraines? The only thing that sucks for me is I get the aura, if I didn't get the aura I would never have a migraine.

    I don't think my gp will refer me if I continue to have migraine free days, any advice is massively appreciated!!

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