National Migraine Centre

Anyone had a similar experience, non stop migraines for 3 months, eye deterioration, muscles problems, fatigue, vertigo and brainfog?

I have been suffering from brainfog, fatigue and problems with balance for over a year, then I started getting muscle problems with numbness in my arms, which I put down to stiff neck problems. In sept I felt my eyes were deteriorating and words on screen 'dancing'. I had an eye test in Nov and told I need long and short distance glasses. Balance issues became more noticable and in december 21st, I got severe vertigo when out (floor moving stuff) and this gradually got worse and started to get migraines, non stop, with pain at the back of my neck going into my head and right eye socket. Told I had an inner ear infection, since then given loads of drugs to try including Topamax which made the eye pain far far worse. Referal this week to neurologist as doctor and chiropractor thought it could be MS and he said it was migraines and the lead up was also migraine without the headache. I have never heard of this. I have been absolute knocked for 6 with these symptoms, can't work, can't watch TV, cant use a screen for more than 10 minutes, cant go out as travel makes things worse, as does overhead lighting. I am now on gabapentin which dulls the pain slightly but not much. Can migraines really be this dramatically debilitating and can you get these run up symptoms? He has prescribed betablockers and asprin. Any one else experience this?

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Hi Wesley10

So sorry to hear you are having a bad time of it.

I’ve lived with migraines for over 30 years now and been prescribed everything.

I have just finished my phased return to work after 3 months off due to the ‘M’ word! I actually seen my neurologist yesterday and we spoke about my dizziness/vertigo and it’s all migraine related (in me). I recently had a balance test at my ENT dept to check it wasn’t inner ear.

I felt like someone had put a screwdriver through my head and into my eye. I couldn’t see through my eye and at first drs were worried about retina detachment or brain tumour.

I totally understand all your symptoms.

Do you have a good neurologist? I seen mine every 3 months.

Try and stay positive and eat well if you are able.

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Thank you. My neurologist seemed quite dismissive and didn’t even read the list of symptoms I gave him. The letter back to GP stated migraines and carpel tunnel syndrome but it is my arms that go numb and pins and needles not my hands. He didn’t listen which is worrying. Now to try beta blockers.

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I've had quite a few doctors that treated me that way and my advice to you is find a new neurologist who seems to care because the Doctor Who blows off your symptoms is going to end up being like when I saw a doctor in Albuquerque, New Mexico and it was for my heart at the time I had a partial right branch block and I went to see the electrocardiologist in Albuquerque no names for their sake and they blew me off because I was young and healthy looking and my heart issue advance to complete heart block and now I have a pacemaker and what happens with complete heart block is the bottom two chambers of your heart will stop beating and most people just died from the condition I was extremely lucky to have an amazing cardiologist back here where I live. What's even worse is it took my brother dying before most doctors took me seriously. So find a neurologist who cares that's the number one issue or try going to the Mayo Clinic in Phoenix or Scottsdale one of those two has a migraine specialty division and that might be where you need to go

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Thank you so much. He’s sent a letter to my doc and stated my symptoms were sudden therefore not MS but they’ve been going on for at least 18 months, but much worse since dec. my arms are going numb and left arm doesn’t feel as strong. This could be a neck issue but unless it’s looked at I don’t know if I should go see a chiropractor or if that would make it worse again. The MRI scan was Friday but only head not neck which is annoying. Waiting for results but he’s convinced it’s migraine. The headaches aren’t too bad, but the vertigo, dizziness, eye problems, brain fog, muscles problems are the most debilitating as I can’t go out. So frustrating

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Look up hemeplegic migraines. I just found those.

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I have had improvement from B12 injections, a gluten free diet, and a herbal Cox 2 tablet which I take twice a day. I've finally started a triptan which does work, I wasn't confident enough to take it before as I was having stroke-like symptoms. I still have migraine about every other day but usually not so intense, the other symptoms have improved, and I am not vomiting so frequently. I also had a free trial of a neuro stimulator which helped with weakness, dizziness and balance but not the pain.

You'll find it difficult or impossible to get anywhere with B12 diagnosis as the test is inaccurate (and you shouldn't supplement beforehand) but it's worth a try. The symptoms can be similar to MS. The other test you might consider is one for anti phospholipid syndrome.

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Thank you this is really helpful and I will work my way through your recommendations. I am a nutritionist and I always take B12, my last bloods showed it was at the high end of normal but I know readings can be inaccurate, I have also been grain free for 3 years. What is the herbal cox 2? Did the doctor prescribe triptan? I think I can cope with the pain in my head but it’s the vertigo, nausea, balance issues, travel sickness, light issues and muscle numbness that is more debilitating. If I can find something that eases these it would allow me to work and leave the house! I will also investigate antiphospholid syndrome. One thing that GP and neurologist ignored is dr out me on HRT for the brain fog etc in Sept, by Nov symptoms got worse and Dec it all kicked off so stopped HRT but could this be related? There is a history in my family of thrombosis.

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I think HRT can worsen things, yes.

The thing I take is Swanson Ultra COX-2 combo. You should check with a doctor especially if you're taking other medication as it is an anti inflammatory and anti platelet (without the gastro side effects of aspirin / NSAIDs.) They don't sell it for migraine but that's what I find it helpful for. (Obviously you have to buy it yourself.)

Yes, a GP can prescribe a triptan. I saw a headache specialist who told me which ones had the best side effect profile - you can google that. You can also get some of them as a melt, nasal spray or injection but I expect they'd start you on pills for cost reasons. They narrow the blood vessels so that aspect has to be looked at with your medical history.

Something else the specialist recommended was magnesium and B2. Again, be careful with magnesium as some kinds will just upset your stomach, and some are enormous pills impossible to swallow. You can get magnesium citrate in a powder you add to water/juice though.

If you're taking B12 you'll know you need folate with it. You can have a high reading for B12 but still not be able to utilise it for various reasons. You can join the PAS group here on HU for more information.

The other thing is that there are some new medications on the horizon, a preventive and an acute remedy which look hopeful in trials, but I don't know if or when we'll get them in the UK.

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In a short answer yes unfortunately. Sorry you’re struggling so much. I too have migraines, they can look like I am having a stroke or seizure. Have been in hospital for a week now with this. I have also been diagnosed with FND functional neurological disorder. Basically my body and brain are having a tiff. I have no disease such as ms or stroke but my body absolutely will not work properly. It does have a test so if ms etc has been ruled out then see if you can find a neurologist who is aware of this condition. It needs a multi professional approach and it can be reversible. Good luck x

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Thanks for the replies, I haven’t had migraines before and I am totally wiped out, unable to function. It’s affecting my eyes, balance, brain fog, muscle problems and speech. It is so all consumming it is hard to think it’s just a migraine, especially having a year or more of symptoms running up to this without headaches but it seems there is a thing called silent headaches. It is fantastic to get support from you all as I feel quite alone and adrift from life. I find it hard to hear there is no real treatment as many of you have been suffering for so many years. How do you all cope. This has been my life non stop for nearly 4 months and my life and work has stopped. I don’t know where to turn or what to do to resolve it.

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Hello! I just found this blog! Is really helpful..I have had headaches for three months now..every day..its so depressing..everyone tells me that I'm stressed but its hard to believe that stress is the only problem. My head burns and my eyes hurt aswell..I just dont want to start a treatment with pills bc im scared.

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The side effects of some of these pills are horrendous. I was given topamax and I really thought I was going to have a stroke. My husband said I was white as a sheet constantly, my eyes were really bloodshot, the pain in my right eye was unbearable. I stopped it after 5 days and within 24 hours started to feel better. I am now on gabapentin and although it does make you very tired, it has eased the pain of the migraines, though done nothing for the vertigo, unsteadiness, muscle problems, numbness in arms etc. I wish there was a magic pill to solve it all and I can get back to normal. The neurologist said aspirin but that made my stomach really sore, so trying it now with omeprozole but more pills, more side effects. So far aspirin hasnt made much difference. The only thing that eases the pain in the skull and face is codeine but trying not to use that too much due to the addictiveness and the side effects of more headaches. So difficult

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Hello again

2 years ago I also found out through a blood test that I was B12 deficient. I can’t absorb it through food or tablets. I now get injections every 10 weeks.

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An often overlooked autoimmune disease, which I have myself, ghic.world/

MaryF

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Hi Wesley10, you bet & it could be much worse! I was born with intermittent Migraines that became Chronic Daily Migraine Disease in Nov. 2008 & now I've been in a non-stop Migraine cycle loop with severe symptoms every single day. I am now disabled by them, can't drive or work & SO MANY other things are gone from my life now because of it. Tried many, many meds; still trying. Going to a pain counselor to help me stay somewhat sane. ! of the best things I've done is to join the Migraine community on Twitter! Try it, you'll find that you're not alone and so many others TOTALLY understand everything you say. Hope to see you there. Hang in there!

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Thanks for that, yes I will try and find support as it is quite lonely being locked in this - I tried to drive yesterday but the road was moving and I had to stop twice, my left arm was also getting numb so just didn't feel safe. Thankfully my car is automatic so it wasn't too bad, but don't think I can try it again for a while. My work is suffering as I cant function and I am self-employed so no sick pay etc. I just want to get back to a normal life again! Reassuring to know the range of symptoms can be explained by a migraine but very frustrating there seems to be no magic pill to solve it.

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