Migraines :: Headache That Lasts 3+ Years?


Sep 26, 2013

For over the past 3 years (starting around July 2010) I have had a constant headache. It is not extremely intense but is dull and always present. Along with this headache I am also constantly fatigued and my head feels very fuzzy, like it's stuck in a cloud. I should also include that I am otherwise in good health, I am a normal weight, I eat properly, get enough sleep, can run around 7-8 miles without stopping, etc.

I have talked to a few doctors, had various tests done including a CAT scan but none of the tests ever gave any results. I was diagnosed with migraines (even though its not plural, it's just one that has never gone away) and given multiple migraine medications. Sumatriptan does not work and actually makes my head hurt significantly worse. No pain medications have any effect on the pain, I have tried many OTC and prescription meds, from aspirin and ibuprofen to stronger stuff like norcos and percocet, but nothing has had any positive effect. I have been prescribed two different antidepressants but they have the unfortunate side effect of making me tired and drowsy, which when added onto my already fatigued state makes it nearly impossible to get out of bed in the morning.

I am writing this because in the past few months my head has been hurting me significantly more and to be honest it is scaring me pretty bad. I have not had much luck with any of the doctors I have seen, they have no idea what is wrong with me and just give me scripts that don't work. I am not too familiar with migraines but I don't seem to fit the symptoms, except that my head hurts. A doctor at UCSF told me that migraines come in cycles but I could not find on the internet someone who had cycles with constant pain lasting many years at a time.

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My headache lasted from march 20-27th and then subsided but still had all the other symptoms. Over that weekends I actually started feeling better everyday! I was sk happy and thought it was some sort of virus or something and it was going away. I still felt off but it started getting bad again April 3rd. This time it was all my symptoms but very exaggerated. Extreme fatigue, extremely heavy eyes, poor concentration, confusion, blurry vision in my right eye, spacing out, brain fog, sensitive to light, pressure behind my eyes, im forgetful, still a little stuffy but not nearly as bad, im a little pale and my headache is gone but my head still feels weird with weird pains that last a second. I went to my pcp on Monday and told him the whole story. He put me on a strong dose of antibiotics and some steroids. The next day I saw an optometrist and i am nearsighted and have an astigmatism in my right eye so i'm getting glasses. 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So yesterday my neuro did a vertigo test which came back normal, now she wants me to get another MRI next week to rule out MS again and I'm terrified. I don't have any numbness or tingling or trouble walking but i'm so scared. My life was so normal and I was actually in the best place I've ever been in my life before this happened and now its all turning to ****. Im crying everyday because from the moment I wake up until the second I fall asleep I feel all the symptoms. They are getting worse, I am getting more frustrated, I am getting more scared that this is something serious because its not going away. Did this ever happen to someone else? Does anyone think this is really MS? I'm assuming my optometrist looked at my optic nerve and would have said something if it looked weird. I have also heard of silent migraines where u have all the symptoms of the migraines except the headache because I have also recently felt like im seeing flashing lights or its hard to explain but its like when im looking at a bright wall, its like I was just staring at static on a tv and then looked at the wall, except im always seeing it I find myself staring into space I have to like snap myself out of it. This whole experience is driving me crazy and i am so irritable and upset. I've also lost my appetite and i cant stop crying because this feeling wont go away it is affecting my life so negatively. I don't even know what to think i want to feel normal and I want my life back its affecting my job, my relationships with everyone, and myself and my happiness I want to do the things I used to. Im sorry for all the jumping around in the story and how long it is, I am very overwhelmed.

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I have never really suffered from headaches during my life until now (i'm 29). There is no family history of migraines.

Out of the blue, after a family function 2 years ago, we got home and I noticed the image out of my right eye was 'cloudy'. I wear glasses so immediately thought my glasses were dirty. I got a shock when taking them off to find it was my eye! I was a bit concerned, then 30mins later I had the worst headache in my life. I had to go to bed early. At some points even the sounds of the TV from downstairs were making me feel sick. It was as if every sound and sense in my body had been amplified. I think there might have been a tiny bit of twitching but can't confirm now as memory of it is a little hazy.

I woke up the next day feeling normal again, and put it down to hangover or just a 'bad headache'. I went back to my daily job (work in IT) and didn't think anything of it. The same thing happened again about a month later, this time not a headache as much, more visual symptoms. After 3-4 hours it passed and I was back to normal again. 

The frequency of them started changing from one every month, then around Jan 2013 one every two weeks, and since around June 2013 one every 7-10 days. 

At this moment in time I am off work due to depression/anxiety (Since Feb 2014) and currently can get them every 2-4 days. Last week I had four in the space of 7 days. 

What I experience now: The 'trigger' feeling that I know one is coming is slightly worrying; I can visibly see my pulse (vein shape) pulsing in my right eye's vision to my heartbeat. This goes on for about 15/30mins, then I start to get spots/lines/an 'arc' shape which will sometimes be there and sometimes now. I will also get moments of no vision in that eye 'black spots appearing over the central vision'.

When I read of people with 'ocular' migraines they note these symptoms usually leave after approx 1 hour followed by a blinding headache. My concern is the aura stays with me the entire course of the migraine - approx 6-9 hours. I believe I have 'retinal' migraines. Difference being I ONLY get the aura in my right eye. If I patch the right eye my vision is normal out of my left for the entire 9 hours. Also my head feels incredibly tight and sometimes will get a throbbing pain just above the tear duct on the right side of my noise. 

I have had my eyes checked and been told the pressure is fine (no risk of glaucoma). Also my blood pressure is normal/high (bearing in mind I do suffer with anxiety/depression).

I am at my wits end trying to work out what triggers them. I have spent months cutting out caffeine/alcohol. It made no difference. I have also tried limiting my use on computers/phones whilst I am off work. No difference. 

The only relief I have found is through exercise. I typically don't do any sort of intense daily exercise, maybe a 20min walk a day and household chores. 

2 Weeks ago, I decided to start an exercise regimen. Did jogging/walking for about 45mins-1hr each day. I went approx 10 days without a migraine (usually it's every 2-3 days at the moment). I am wondering what in the exercise is causing this relief? Could it be hormonal or just a stress reliever?

I don't smoke and don't drink much alcohol any more. I do have a bit of a weak neck - maybe this has something to do with it? My main concern above all else is it's not your typical aura, I only get it in one eye. 

I have also noted that I have never had a migraine before 1PM and after 10PM (apart from one rare occasion at 4AM when I was having a panic attack in bed). Something is happening between approx 2PM-10PM to trigger it, but I don't know what. 

I'm a bit of a hypochondriac at the moment, thinking it's a brain tumour or i'm at risk of stroke. I wanted to get a scan but GP said "if you would have had a brain tumour since 2012 you would know by now" and suggested meds.

Does anybody else here suffer from their 'retinal' migraines, or can offer any support or advice?

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