Migraines changing all the time and now I have pain in my left eye most days.

[snfg]

Hi, I've suffered from this curse for over 30 years now, fortunately the attacks lessened after my teenage years to only 1 or 2 a year and then only lasted about an hour or so...but when I was 38, they came back with a vengeance and are constantly changing, but always with Aura.

Some attacks last hours, some only 40 minutes or so, sometimes every 4 days for weeks, then 3 to 6 weeks remission then change again to 1 or 2 attacks a day for days. They always leave me with what I call my Migraine Hangover, I feel lethargic, I transpose letters when writing, use the incorrect words whilst talking ...which is horrible.

Now....10 years on I have been experiencing pain in my left eye most days, this can be just a dull throb or be quite excruciating. The pain sometimes radiates to my left temple and down my face.

Apart from the fact that trying to carry on with some sort of semblance of a 'normal' life is a 'bit' of a strain at the moment, I am beginning to really worry that this may be the start of 'Cluster' headaches...as well.

[Hidden]

Hi there

I have a similar migraine profile to you, I've had them for more than 30 years and a very similar pattern up to my mid 30s. I have more than one type of migraine though and have been chronic for almost a year.

The eye and face pain: I also get this, and have had it for many years, on and off. This is migraine, it often goes into the jaw, ear and teeth too, it seems to trigger off TMJ. I used to think I had tooth ache at times as it got so bad. The eye/face pain makes you feel really poorly, I always feel like crying with it.

Have you considered visiting NMC? It sounds like you'd really benefit from seeing a migraine specialist. Perhaps you could keep a migraine diary to keep a note of how many migraines you are getting each month and if there is a particular pattern?

Wishing you all the very best, and I hope that face pain eases very soon.

[snfg in reply to Hidden]

Thank you, so do I....I am considering visiting NMC....but I'm my own worst enemy, too busy at work at the moment and refuse to look after myself until I finish that....constantly getting told off from the other half. I do have a question if you don't mind? You say you have more than one type, I have only been diagnosed with 'Migraine with Aura'. Were you diagnosed at the NMC or a Neurologist at your local hospital? Thanks

[Hidden in reply to snfg]

Hi there

I have migraine with aura, but also basilar migraine and vestibular migraine.

I was diagnosed with the aura at 16 by a GP and then in my late 20s by a neurologist at St Thomas's who diagnosed basilar/complicated migraine in addition to the migraine with aura. This was later re-confirmed at NMC around 5 years ago. I was then diagnosed with vestibular migraine in March of this year by Neuro-otologists at the National Hospital for Neurology (NHNN) and Neurosurgery, and again NMC also agreed with that diagnosis when I saw them just recently. So now I go to NHNN and NMC, I travel to London to see them as they are, in my opinion, the best people to see. So my diagnosis spread over a period of 30 years...sometimes it takes a long time to fit certain symptoms with migraine, vertigo for instance.

I did go to my local hospital, but there are no specialists there, so although they are helpful, they do not have the experience/expertise that NMC have. There are huge gaps in the knowledge of migraine with GPs and other medical health professions, it seems many of them know very little about the complexities of the condition once it goes beyond getting the occasional migraine/nor how to treat them if tryptalines don't work.

It's important to look after your health, but you will seek the help when you are ready to. I would recommend going to NMC though, it is quick and you get definitive answers and help and really objective, practical help with treatment.

[snfg in reply to Hidden]

Thank you very much for your quick response, I will follow your advice and get myself to the NMC. There is certainly a requirement for me to increase my knowledge and improve the quality of my life. Take care.

[Susann]

I have never met anybody let alone two people with symptoms like mine! I too have pain in my right eye and sometimes the pain radiatesmdown my face and feels like it is the trigmenal nerve. It also seems to marry up with the fact that I have TMJ.

I too have had migraine for 30 years and they have changed from emanating from the occipital bones at the back of my head (still have these), to the migraines explained above. I was told a couple of years ago that I had neuralgia by a consultant and could not seem to explain to him that the eyempains caused the full blown migraines which had been diagnosed by a consultant 30 years previously. They started with my arm being twisted behind my back and I never got rid of them.

I recently had botox in the side of my head which rid me of most of the eye pain but I am still suffering weekly migraines which would be even worsemwithout beta blockers. Maybe you could try bottom, if possible? Good luck.

[snfg in reply to Susann]

Thanks Susan, although it sucks to suffer from this damn curse, it certainly makes you feel better to know that you are not alone and the hope that research continues and new and better treatment is developed. I had not even heard of TMJ before coming to this site and having read your post, I looked it up and a lot of things are making sense...at a recent visit to the Hygienist I was told that I've been grinding my teeth quite badly, that could also be associated with the stress (only myself to blame...work) I've been experiencing over the last few years...

I too take Beta Blockers (160mg) daily which have reduced the intensity and length of the attacks, however my doctor wants to increase that to 240mg daily. You also say that your migraines started with your arm being twisted, I've always said that the migraines definitely got worse just as my back and neck problems increased (4 prolapsed discs and increased degradation of the vertebra of neck...result of some very silly escapades in earlier life) but those explanations have always been met with the "well maybe but its unlikely" response....

Anyway, take care and thanks again for the response

Simon

[karenjones]

Hello there, same here.. I've had migraine without aura for over 20 years, chronic since hitting my mid 30's. I've been hospitalised 3 times in the past 4 years when I've been so incredibly ill I couldnt cope. My most recent episode started in May this year where I developed a pain in my right eye that was unrelenting and extremely painful. Also felt very nauseous, fatigued and had photophobia. I was given every painkiller available to no effect, triptans didnt work like they would with migraine. Eventually the pain has calmed a little (its taken 4 months and a week in hospital) but I'm left on a constant phentyol patch (morphine like opiod) and unable to come off it or the pain returns. My GP suggested clusters but I didnt think that fitted, I thought a condition called hemicrania continua was more like it so I'm going for indometicin tests in hospital later this year. Sorry not any help but nice to know you're not alone!

[snfg in reply to karenjones]

Hi Karen, Jeeze...I thought I had it bad....I really hope everything goes well during the tests and they are able to offer some treatment. You know I really feel like getting on my soap box and start shouting the more I hear peoples stories living with this terrible terrible disability....Thank goodness there are still people such as those at the NMC...Take care and thank you for responding. It is good , not to be alone...