Mmigraine sufferer: I am new here, and... - Migraine Support

Migraine Support

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Mmigraine sufferer

peleni profile image
8 Replies

I am new here, and pleased to have this support in what is a very lonely and misunderstood place.

I have had migraine with aura for 23 years. I don't get a headache, but have sensory symptoms such as blurred vision, weakness, fuzzy brain, difficulty focussing, feeling I will collapse, etc. They are very debilitating. I had a stroke 8 years ago which was put down to migraine, They discovered I had a moderate PFO (hole in the heart), and debated whether closure would be helpful, but decided against it. I have been on aspirin, and for many years, 25 mgs of amitryptilene was an effective migraine preventative.

While living in a country with poor medical healthcare, I developed excessive ectopic beats and feelings of unwellness 18 months ago. The cardiologist suggested amitryptilene was causing that, and I weaned myself off it, thinking that maybe I had outgrown migraine. 6 weeks later, in January, 2016 , I had a significant migraine, and it really hasn't settled. The last year or more has been the worst in my life as I battled constant symptoms, feeling as though I would collapse daily. I ended up trying toporimate, naproxen, doubling the amitryptilene etc, but nothing would bring me back in balance. Last year I started some verapimil, and now I take 80 mgs of verapimil and 20 mgs of amitryptilene. The ectopic heart bearts and migraine symptoms come and go and I still don't feel I can hold down a job. I really would like to be healthy and able to live a norma life again.

Some questions: Has anyone had a PFO covered over that has relieved migraine symptoms?

Does anyone have similar migraines where they dont get a headache but you have been diagosed as having migraine and what has been helpful in terms of medication?

Has anyone had a stroke related to migraine, and what advice were you give about prevention?

Many thanks

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peleni
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8 Replies
pump321 profile image
pump321

Hi Peleni, Welcome to Health Unlocked. I am a chronic migraine sufferer too but my problems are very different to yours unfortunately so I am unable to really be of much help. I just wanted to offer you some support in your struggles as I really undertand how terrible it is not to be able to live a normal life like other people. I've spent years suffering with migraines that cannot be to be controlled and spending up to 3 to 4 months in bed every year suffering if you had up all the days I am out of action and am not able to do anything at all. Nobody understands just how debilitating life is with this terrible disability that affects all aspects of our lives and reduces us to wrecks. I feel so sorry you are having such a terrible time. I had often wondered if I had a PFO but it has never been followed up. Migraine is such a complicated illness that is not fully understood. I have visited many migraine experts over the years and tried many different medications but nothing works for me except the triptan Zomig for each attack I have and I can have up to three or four a week so it's never ending. I really feel for you and hope you are eventually able to find something that will help you. Thinking of you.

in reply to pump321

Hi pump,

Thanks for your words of encouragement. It certainly is a complicated area and you do feel alone, but its somehow comforting to know that others are walking the same path. I do hope things improve for you in the future also. Thanks for your kindness.

pump321 profile image
pump321 in reply to

Thanks for your reply Stickyblood. It does help to know we are not alone in our struggles with this horrible disability. I feel so very sorry that you are suffering so much and I really do hope you are able to eventually able to get some relief somehow. Thinking of you.

krazy-girl profile image
krazy-girl in reply to pump321

What may I ask is PFO?

JH247 profile image
JH247 in reply to pump321

Hello pump321 Tell me do you eat chocolate, bananas. or grapefruit if you do try stopping eating the above, and see if that will help. I have suffered for over 20 years, but not eating the above really does help. Hope this is helpful.

pump321 profile image
pump321 in reply to JH247

I stopped eating chocolate years ago and so many other things that I proved triggered my migraines. I have suffered for over 40 years and tried just about everything there is known to man but it's such a difficult problem to deal with. Thanks for your suggestions, it was kind of you to reply.

Shazzzy profile image
Shazzzy

Hi peleni I have chronic migraines and my gp thought I had a stroke, had MRI etc and was told it was a hemiplegic migraine. I had never heard of them before. They caused temporary paralysis on left side and a permanent weakness. I have tried every medication going and used to self inject sumatriptan as it was the only way to stop them. About a year ago I was able to change to a nasal spray which is working just as well, in fact better as it doesn't affect the fibromyalgia in the same way. None of the preventatives stopped the migraines but nortriptyline has lessened the intensity. I don't want to bang my head on the floor so regularly ! I hope you can find some relief soon. All the best

in reply to Shazzzy

Thanks Shazzy. I appreciate you taking the time to reply. I'm sorry you are also going through a very difficult time. All the best for you also

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