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(10 Posts)
butterybiscuitbasebasebase Wed 14-Feb-18 12:43:51

My husband has suffered from what has been diagnosed as migraine for the last 15 years. He describes having tunnel vision, as in he loses part of his peripheral vision, but doesn't often suffer with headache.

He's currently seeing a neurologist who gave him Botox injections approx 3 months ago, but these didn't help at all. Over the years he's taken many different kinds of mediation; he took pizotifen long-term which was most successful but still didn't really do much, he's tried propranolol, gabapentin and most recently pregabalin but again, didn't do anything. He's just been given a prescription for amitriptyline because the neurologist thought it was worthwhile revisiting some of the early medication they would give to migraine sufferers. Prior to his referral to the neurologist he's had ENT appointments and an MRI, which were inconclusive.

I'm concerned that we're going round in circles and he's never going to get any relief from what is a debilitating condition. It's really affecting his quality of life, for example he's had to give up driving because he's worried about having parts of his vision missing. I feel like the doctors aren't taking it too seriously, when it affects him every single day.

I was wondering if anybody had any similar experiences that they could share? It's a bit of a minefield Googling because everyone describes so many different symptoms.

butterybiscuitbasebasebase Wed 14-Feb-18 12:46:19

Want to add as well that his most recent eye test (last weekend) didn't flag anything unusual up.

QuestionableMouse Wed 14-Feb-18 12:51:18

Not all migraines present with a headache. Visual (ocular) migraines are a real condition and that sounds more like what your DH has than the traditional migraines.

butterybiscuitbasebasebase Wed 14-Feb-18 12:53:12

@QuestionableMouse this is the hurdle we're struggling with, all the diaries and quizzes he was given by the neurologist were to do with traditional (headache) migraine and he has to keep repeating that he doesn't have a headache problem. Again, the Botox is for headaches but they decided to try it anyway. I feel so frustrated for him, medically it seems there is little known about treating migraine.

Pappawasarollingbone Wed 14-Feb-18 19:54:50

How awful. I’m the same but I get the migraines about twice a year if I’m really careful so I’m no where near as serious.
All that works for me is as soon as I get the first symptom I drink lots of water, take some painkillers (although the headache isn’t too bad) and go to bed. I need complete darkness and eyes closed. After a few hours or less it shifts.
No comparison to your husband but I wanted to sympathise. I get the tunnel vision, or a feeling like I’m looking through lace.

vitaminC Wed 14-Feb-18 20:28:01

I have very similar optical migraines, with visual disturbances and sometimes aphasia (language disturbances).
I've been taking amitriptyline for just over 2 years now and have gone from 2-3 migraines a month, to one every 2-3 months - a huge improvement in terms of quality of life!
I started off on a tiny dose, which I had to increase a couple of times when the migraines starting coming more often, but I've been on the same dose for a year now and it seems to be working well for me.

underneaththeash Wed 14-Feb-18 21:36:57

I also get visual migraines (very similar mine start with flashing lights and then I get constriction of the visual field like your husband.)

I found keeping a migraine diary helped, my triggers are tiredness and hunger (also lack of iron - we were trying to cut down red meat in our diet) and also oddly zinc.
I actaully find that if I keep dried apricot and a banana with me at all times with water and ibruprofen - the migraine one. I can stave off an attavk most times.

Your husband's triggers will likely be different but keeping a diary could help him.

IAmAMonster Thu 15-Feb-18 11:05:54

I also suffer from visual migraines, I find a 75mg dose of aspirin daily helps.

Alison100199 Thu 15-Feb-18 11:15:25

I have visual migraines with no headache, maybe one a month. I don't take any medication but am aware of the triggers. If one comes on I consider myself lucky o don't have a headache and just have to wait until I can see properly again. How often does he get them and has he recorded a diary with triggers while he has been on no medication? I ask because medication itself is a trigger for me.

butterybiscuitbasebasebase Fri 16-Feb-18 13:34:20

Thanks everyone.

@vitaminC that gives me hope for the amitriptyline so thank you for sharing your experience. Fingers crossed we will see some results from it.

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