It's nearly a year since I was last assessed at my Headache Clinic. Having being told I had chronic migraine, I accepted Amitriptyline and managed to titrate up to 75mg daily. I had some very good days, even a couple of weeks without any head pain, but now, seem to be in another bad patch again, but cannot understand how it has gotten worse, as I take the Ami with migraine supplements and eat a very healthy fresh diet, avoiding processed foods etc.
Not only am I back to suffering daily headaches, I have distorted vision in my right eye a lot of the time - when I had aura migraines they would start in that eye. My headaches have changed over the months, I don't even know if they are classified migraines now, but it all hurts bad!!
I have experienced vertigo in the middle of the night, waking with my eyes moving involuntarily. I often get a 'hypnic jerk' when dropping off to sleep at night, it's like you are falling asleep then come back awake again. I get shooting pains in my head as well as the intense ache. I don't know if I am becoming more anxious about things again and if that's affecting it?
Has anyone else experienced similar, different symptoms but with ongoing head pain, despite medication?
Written by
KatherineM_PBC
To view profiles and participate in discussions please or .
You poor soul, going through all of this! Migraine really can be such a life changer and it's always so frustrating when treatments that once worked, no longer do in the same way. Have you considered getting another opinion from another migraine centre (the National Migraine Centre in London is wonderful). Are you around menopause? Certainly in my experience, perimenopause and menopause made life a lot worse with regard to migraines and my headaches worsened considerably (depends whether your headaches are triggered by hormones or not). I'm just at the end of a four day headache right now and a bit despondent that I've gone down again. But that being said, I've had 8 weeks of feeling good mostly (due to two preventive meds, diet and supplements). I really do believe that there is always help out there for us for our migraines, we just have to find it. Good luck in finding the help that you need. You will find it- I'm sure of that. All the best, Clydelle x
The trouble with dietary causes is that, just because you eat very healthily, it does not mean you're not reacting to something you're eating. I don't have chronic headache, just severe, one sided headaches classified as migraine periodically ( think its my neck causing it, but that's another story) and used to have aura migraine attacks at least once a day, often 2 or 3 a day. Then I gave up dairy completely for a different health reason; its been a year, and I haven't had a single aura migraine since, much to my complete astonishment and delight. Inever gave up a little butter here and there, like on a jacket potato occasionally, but no dairy cheese, yoghurt, fromage frais or cream, I switched to plant based products instead. I'm not saying this will work for you, but its worth considering that there might be something healthy that you are consuming that is having some impact.
I've never taken amitriptyline or any of the other drugs offered for migraine (though to be fair, I was considering it when the aura migraine became so disabling and so frequent) so I can't comment on that.
Thankyou , that's very interesting. I have dabbled with lactose free cheese and dairy free alternatives to yoghurt and although I liked them they were so much more expensive. Next time I'm shopping I'm just going to buy dairy free for the next couple of months and see if that helps, we already have soya at home for teas and coffee, no dairy milk. Would you know......there are products that say dairy free and some that say lactose free.....is it the lactose that is the problem?
No idea, frankly... I cut out dairy to get my cholesterol down (worked, cut it by half, but I don't eat much meat either); I'm pretty sure I'm not lactose intolerant though or I'd have had digestive problems when eating it. Try cutting it out completely for 3 months, if it doesn't make any difference, you can always go back to it. But for you it might be citrus,or chocolate, or sugar, or whatever... its that old and tedious 'elimination diet' experiment really...
I'd just add that, so far, I have not found a useful replacement for cheese... all the vegan options are just fat, really, either coconut based or nut based, and none of 'em taste like a good strong cheddar...
I get tension migraines and I took to many over the counter medications and caused chronic migraines. Please take the time to watch all of the videos you can and it will change how you view things.
The theory about migraines is that it is a syndrome where you have other issues that cause the brain to get a migraine. I have back and neck pain and I know that is one of the causes.
I have been taking magnesium for years and it was not working and disovered it's the wrong type, thanks to world migraine.
There is no easy fix but see what it can do for you.
Hi. I was following the Migraine Summit as I registered and got daily emails from them but there is so much to watch and I wondered if half of it would be relevant? Can you please guide me to interesting articles you watched? I have read different theories on migraine, we all have a point where we will tip into migraine, so if we eat clean and are not stressed, sleep well etc then we may not get a migraine, but on a day we are stressed, don't sleep and eat a lot of junk food, we would be more susceptible? Then some say they have food triggers, or some know it's caused by their fluctuating hormones! I have noticed a lot of neck pain with the headaches lately so maybe I'd better get a new pillow? It's a minefield eh!
Here are a number of things I learned. If the treatment ( or lack of treatment) is not working becuase you continue to get headaces you are using the wrong treatment.
Many people with migraines are low in magnesium. Are you taking magnesium? If so are you taking the right type? They say take: Magnesium glycinate. Also when you take something for it do not over use it. Like triptans don't take to many.
If your neck is painful can you work on making it better?
When I have a min. I will see which bn ones I recommend.
I’ve had the aura migraine all times of day and night, while asleep 💤 as well , vision blurry sharp pains in head , yes with dizziness, the other night woke up with blurry eyes feeling really odd , sometimes get them in both sometimes just the one , it is really scary but do think the panicking makes worse and anxiety about them doesn’t seem to make a difference whatever you’re doing at the time or food , so sorry 😐 you are suffering,
I was going to say "it's reassuring to know someone else gets the same".....but you know what I mean. When I describe my symptoms to non migraineurs they really can't understand how I manage day to day, I guess I have just got used to the imbalance I often feel, and I can even work with the daily headache until it flares. But life can be pretty miserable some days and I feel like I'm living on a lot of memories with not much hope of making new ones when I socialise rarely and don't enjoy travelling. Best wishes to you Tigipus and hope we find a solution.
Please make an appointment with your headache specialist and let them know what has changed. Yes, it probably is the migraine “transforming” (mine has a few times and now can include vertigo and odd smells and trouble speaking and other “stroke like” issues) BUT anytime symptoms change significantly, it is very important to have it checked out. Just because we suffer migraines doesn’t mean we are immune to other things that can go wrong up there.
I too am a chronic migraine sufferer. I at the moment feel like I am balancing a life of 'managing' and trying to function with side effects of the medications and and the frequent migraines which can be anything from leaving me in a state of sheer hell for 3 or 4 days a week.
I have been on toprimate for just over 4 years and it would know seem it has reached the end of its effectiveness so I am currently on a beta blocker after trying various others. As yet it is not having any effect and the side effects are horrendous, I am not even at the preventative dosage yet as I have gradually build the levels up. My neurologist is very understanding and everything I am experiencing is normal but it doesn't make things easier. Alongside this I am now having to finally relent and refrain from work which I hope does not cause my employer to have a go as the Dr advised whilst the new medication is being introduced it is just not advisable. The neurologist has said If this last course of treatment is not successful then I am a suitable candidate for BOTOX.
Oh dear herbmonster, I was feeling quite sorry for myself but you sound like you're really despairing. I refused Topiramate when first offered it as I had read the side effects, Amitriptyline has some too but considered them easier to manage. There was a period a month or 2 ago when I thought I was lifting out of the relentless migraine, but it returned for an 11 day flare. I think it is easy to just say "this is the card we've been dealt" but I saw some girl friends a few nights back who I hadn't seen for 2 years, just as the migraines had started, and they couldn't believe I was "STILL suffering", others just don't seem to accept this can be an ongoing condition, so I thought, why should I!? I am definitely going to book the National Migraine Centre for a second opinion, I don't want this to control me any longer! Best wishes to you and keep on fighting xx
Thanks KatherineM_PBC, I look at the positives everyday though as I try not to let things get me down to much and see these things as just hurdles to overcome.
Though the neurologists will not 100% say the chronic migraines are because of it they started after a meningitis illness in 2014 where I was in intensive care but thankfully recovered and look at it as I'm still here. Then I was struck down with viral meningitis in 2018. Since then whether again coincidence but the symptoms have just intensified.
I was totally reassured by the professor I am under as when I saw him all the questions he asked me which I answered he explained were 100% consistent with being a chronic migraine sufferer. Such things as not being able to tolerate medications, muscles aching, nausea not just by the heads but the medications.
He was also understanding in regards to balancing out the being able to function and try and live on a normal life. I have at best constant pins and needles in the left side of my body but that is manageable if no deliberating migraine for 4 out of 7 days. Even he got quite disgusted when I said when a sickness bug caused me to have to take time off from work and the return to work meeting I was advised "to drink water" if I got a headache. His words were "obviously dehydration would not help anyone but chronic sufferers like yourself well did not know HR were professors in the field of nuerology"
I am in bed now as the dizziness from the medication is bad, not as bad but still not goof. Starting to fret over the fact that back at Drs tomorrow to increase dosage and still not at the preventative dosage. Likelihood is another sign off work, then will no doubt be worrying about works reaction.
I have heard it all from friends too, the comments such as "drink more water", hilarious! I only drink water and a cup of tea here and there, couldn't tell you when I was last able to enjoy a glass of wine. Your Professor seems a nice guy and if only there was more understanding in the workplace about migraine. I have a member of staff who gets episodic attacks and know she has to go home straight away as she simply cannot function, I own a small business and it can be extremely inconvenient but I totally sympathise. I have been able to take some time off from my business and get the other staff to work more hours but sod's law I get a headache on the day I'm meant to be working, and I can't send myself home if I'm the only 1 there. I don't know your age or financial situation but is it a consideration to take an unpaid break from work, perhaps you could speak to your employer about it, as the more you worry about being off that won't help.
During all my investigations to help with my headaches I came across the details for ASEA redox. If you have no doubt tried everything else, have a read about this redoxsignalingwater.com/Pro.... If you are tempted to buy, send me a PM and I'll give you a link to a guy in the UK who is a supplier. I tried it and saw an improvement - at the time I was taking so many other pills and supplements, I didn't know if it was making any difference but will order some more and have another go as I'm so fed up constantly on tenter-hooks that another migraine is going to strike.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Head, Coccyx and Eye Pain - Link?
Misdiagnosed? You may have cervicogenic (neck based) headache
Rebound headache? Advice needed 
Pain behind right eye/Sumatriptan
