Migraine /cluster headache /red eye

[Mig1]

I have suffered from migraine since childhood. As a teenager, I developed the headache on one side through my right eye. The migraine became so bad in my early 20s , lasting 3-4 days with severe pain, sickness and inability to do anything that the doctor suggested I try beta blockers as a prophylactic. I have been taking beta blockers ever since only changing from atenolol to propanolol in the early days. Since Imigran came on the market, I have been successful in maintaining my headaches somewhat and after initial treatment at the onset of an attack, have been able to get on with things most of the time. Occasionally, the headache still takes it course over a number of days but the pain can be stemmed by taking more Imigran. However, in the past year, I have had an increase in the number and frequency of headaches. My doctor has doubled my dose of beta blockers. I have also developed red eye which is very painful. This is only in the eye which is affected by migraine pain when I have an attack. I think I have aura headaches /hemiplegic. I am now suffering badly when i get an attack not only with the pain of the attack and sometimes sickness now as I can't get back to sleep to allow the Imigran to take effect without being sick due to the pain of the red eye and my inability to close my eye until the Lacrilube has moistened the eye sufficiently and the redness has begun to dissipate. I have had an increase in waking with migraine as well. My GP feels that the red eye is being caused by cluster headaches. I have had to take some time of work as I believe that the stress in the workplace has caused the increase in headaches. Since being off I have managed to get the headaches under a bit of control and have been able to engage in more relaxation /destressing activities (yoga/walking, etc). Not only am I suffering from the pain of headaches now but also a very painful eye with daily use of eye drops throughout the day and lots of Lacrilube on the affected eye at night. The other eye is normal. Has anyone else experienced red eye? Does it ever go away again? My employers are not being very helpful, I feel that they think I can't possibly need to be off because I only have a headache. They are hinting at discplining me and are sending me to the Occupational Health doctor for an assessment. Does anyone have experience of proving that their migraine has become so bad that it could be considered under disability legislation and therefore reasonable adjustments could be asked for? I would really appreciate any help or advice which you can offer. Thank you.

[LindaPhoenix]

Hi, my migraines sound similar to yours, although I don't actually get a red eye with them, but get the pain through my eye & into my temple & over my eyebrow. I have a very slight eyelid droop over the eye that is affected, although I think I only notice it as other people say it's only if you look for it that you can see it. I used to take Propranalol but stopped as I felt like a zombie, as if I was in a bubble. I also tried Topiramate (terrible drug with awful side effects), Pizotifen (rash) and Amitriptyline (heart palpitations), so I've not had much success with preventatives. I'm back on Amitriptyline 10mg at the moment as 50mg gave me heart palpitations. I seem to be ok for a few weeks on a new preventative but then the side-effects are too bad & the migraines increase again, as though my body is trying over-ride the medication. My reason for replying is that I've had a lot of success with health supplements which are worth trying. They don't get rid of my migraines completely, but I've gone from them ruling my life & having a throwing-up migraine every two weeks with a mini migraine on the weeks in between (so once a week basically), to only having the mini migraines about once or twice a month at the most. I'm not taking Sumatriptan at present as my neurologist said they can cause rebound migraines/headaches, so I've been off that for about 2 months now. I was taking 100-200mg a week before. I found a factsheet on the Migraine Trust website which suggested a combination of supplements, so I now take 400mg Vitamin B2, 800mg Magnesium & 300mg CoEnzyme Q10 a day, plus evening primrose oil & fever few. One thing that really helped me & I had NO migraines or headaches at all for 3 months (bliss!) when I started was Soya Isoflavones. These are a natural oestrogen booster which are available from healthfood shops, Boots the chemist etc. I took 1 tablet a day (I think they are 40mg) and it was amazing, within a week I stopped having migraines. The man who runs the healthfood shop that I bought them from said they can stop working as your body gets used to them & that's what happened to me, but it was 3 blissful months! I'm off them at the moment, but may start taking them again in 6-12 months time & should get that 3 months of no migraines again at the beginning. I also do a few other things to help my migraines, such as: don't eat anything with MSG or aspartame in, sleep slightly elevated in bed (used to wake up with migraines, rather than them come on during the day) with 3 pillows in a triangle shape, sleep with the window slightly open, I wear a baltic amber bracelet (meant to help teething babies too! So they're recommended for pain), it's early days as I only bought it 2 weeks ago, but it's pretty even if it doesn't help & only cost £13! If I get a pain in my temple or neck (sometimes I get really painful stiff neck with migraines), I find that rubbing in DeepHeat really helps. Now when I get a bad pain, I use 900mg soluble aspirin (absorbs quicker), or Paracetamol Extra (paracetamol with aspirin & caffeine) & one of those usually helps enough to carry on, sometimes it even gets rid of it. It's a nightmare living with migraines & I hate taking any unnecessary medication, so I'd rather look at alternatives as long as they don't cost a fortune or have any harmful side-effects. I've tried acupuncture, but I don't think it really helped, but was fascinating. I would really recommend trying soya isoflavones (assuming you're female!) first as they made the biggest difference for me. As for work, you've just got to carry on doing what you can & try not to worry what they think. Unless someone has had migraines, they don't understand how debilitating they are. If someone asks me how my "headaches" are, I want to scream at them! Good luck with it all & just keep trying new things.

[Pinkiezoom in reply to LindaPhoenix]

Thank you for this post, i am going to try the soya isoflavones as i have just gone cold turkey off all my preventative meds, as they were not working , and the beta blockers made be depressed. Fingers crossed i get a bit of relief like you did

[Ghost2345]

Hi

If you go onto The Migraine Trust website you'll be able to order their " Employment Advocacy Tool Kit " it contains a lot of info for sufferers and managers. There are letter templates that you can use and info re: the Equality Act 2010 and it's relevance to Chronic Headache sufferers. There is also info re: what you work adjustments should be made in you work environment e.g. Computers, access to fluids ventilation etc. I have found it very useful as I to am being taken through our Sickness process. Your Occupational Health Dept. should not be out to make life difficult for you they are their to help you stay in work and to advise your managers. The best approach is to work with your manager, they will not have info to guide them if you do not give it to them. I gave a copy of the Tool Kit to my manager so she can make informed decisions. It is in both your interests that you are fit to work.

Good Luck

[Ghost2345]

Hi

If you go onto The Migraine Trust website you'll be able to order their " Employment Advocacy Tool Kit " it contains a lot of info for sufferers and managers. There are letter templates that you can use and info re: the Equality Act 2010 and it's relevance to Chronic Headache sufferers. There is also info re: what you work adjustments should be made in you work environment e.g. Computers, access to fluids ventilation etc. I have found it very useful as I to am being taken through our Sickness process. Your Occupational Health Dept. should not be out to make life difficult for you they are their to help you stay in work and to advise your managers. The best approach is to work with your manager, they will not have info to guide them if you do not give it to them. I gave a copy of the Tool Kit to my manager so she can make informed decisions. It is in both your interests that you are fit to work.

Good Luck

[Mig1]

Thank you Linda and Ghost, some very helpful suggestions. I have just received the Employment Advocacy Toolkit, it is indeed excellent and reassuring to see how to go through the process of getting resolutions at work. I feel that if the stress of this was made easier, the headaches might settle down again. Fingers crossed, we never know with migraine!

[teadrinker]

Oh dear, that sounds awful. And how ridiculous that we live in a society that you are disciplined for something that isn't your fault!

I don't suffer anywhere near as much as you do, and I don't have cluster headaches, but the eye on my migraine side gets very red and sore a lot of the time, and waters when I get an attack. A pain consultant I once saw said it is possibly caused by the nervous system reacting to the pain.

Good luck

[Mig1]

Thanks for your good wishes. The red eye has settled down and I've got the headaches back under control using my increased dosage of daily beta blockers. I haven't had the daily headaches /red eye for 8 weeks now. Being off work definitely helped to get them back under control. I have been back at work for 5 weeks now and of course, I have been told that they are currently considering disciplining me for "failure to attend work regularly". It is utterly ridiculous that migraine sufferers have to put up with this. We definitely need to keep lobbying for change!