I’m a 24 year old girl and I was diagnosed with a chronic migraine after contracting Covid-19 in January 2020. After examining my medical history my neurologist found I had a predisposing gene that was activated by the virus. I have none of the stereotypical migraine symptoms, it’s a pressure pain in the top and occasionally sides of my head. It is constant and never goes away. I have tried several preventative medications and am currently trying Candesartan. Has anyone had any luck with this one? I have also just had the GON block injection but unfortunately have had no relief from this. This condition has massively effected my mental health as I have had to give up my career in teaching hopefully temporally until I can find the right treatment for me. I would love to know if anyone can relate to this as I am feeling very isolated in the type of migraine I have and how it came about. I am waiting to be seen by a headache clinic but have a long wait for that unfortunately.
Sending love to anyone else suffering I really do feel and appreciate your pain and frustration.
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Bambi222
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Sorry you suffering chronic pain not easy to cope with ...keep going.......with trying new meds ....keep alternative options open as coping strategies, don't forget your friends ..and family ....hope gettingsupport......certainlygot mine! ...and keep asking g.p for referral to specialist headache clinic speeded up or ring secretary to say how much in need you are .... if can go private.....sort other clinics? Its bad time for us all rewaiting times ....across all conditions....wishing you know sending my warmest regards and a stopping of your pain atleast best management..........be kind to yourself ..... use resources of charities brain n spine very good advice amongst others ....migraine trust.. .. you are not alone .....Happy for you to message me personally......its freezing where I am hoping to enjoy sunrise with dog n husband ......wishing you all the very best X
I am really sorry to read this. Are you sure about the diagnosis? I do suffer from migraine and have done so for years but I developed a different headache as well which sounds almost exactly like yours. That is called hemicrania continua and for me is well controlled by melatonin.. If it is migraine there are lots of drugs to try if the candesartan doesn't work. Do join the migraine trust if you haven't already. They cover all headaches and have a very good helpline. They also have a number of good videos on youtube with helpful advice and tips for self care. I found one by Prof Fayez Ahmed was particularly good. If you know the headache clinic you are being referred to ring the secretary and tell them you are available for cancellations. As CookingCookie says waiting list are awful at the moment but that is worth a try. I do hope you find something that helps.
Hi Wrexham 16 . I noticed that you have been taking melatonin , is this prescribed by a doctor or have you bought it over the counter ?I have chronic migraine and have tried 14 preventive treatments including the anti CGRP injections but nothing has helped . I have read about melatonin but it has never been suggested to me by my headache specialist .
We're you offered it by a doctor or did you ask for it if it was prescribed ?
Hi I do suffer from Chronic migraine but I am not taking melatonin for that. Some years ago I was diagnosed with Hemicrania Continua and my consultant eventually put me on melatonin because I could not tolerate any of the other meds. I was then taking 9mg which was then prescribed by my GP. Then more recently I developed Hypnic headache and everything I read suggested melatonin would help but in much larger doses. My current consultant would not prescribe it because he said my health authority would not pay for it even though they were already paying for some. However I am now taking 18mg, I did a lot more research and am buying it myself. It works on the Hypnic headache but I have seen no research that it helps with chronic migraine and it doesn't help mine. If you think it might help you it is very cheap and the tablets I am buying over the counter works as well on the 2 headaches I am taking it for as the the ones I used to get on prescription so you could give it a try
HiSorry I didn't see this earlier. Just a couple of thoughts. The melatonin you get on prescription is timed release so when I was transferring to over the counter that's what I started with. I wasn't really helping my second headache so I switched to immediate release and that is what is now working for me. So do experiment. Also do remember that you can take a lot. When I told my consultant I was doing this he expressed shock that I was taking 20mg. He said the most he would prescribe (even though he wouldn't give it to me!) was 16mg. I dropped down to 16 and it wasn't working so I am now going back up to 20. I did see one piece of research where someone was taking 30mg. Already at 18 I am seeing an improvement but experience makes me want to do everything gradually. I really hope this helps for you.
Not a problem. I'm afraid you have to buy it online . I was importing it from the States for a while but just recently I've been able to get it in the UK. The company I use is called Piping Rock. It is so cheap in the States that it is cheaper to have it shipped from America but there is always the worry that it will be held at customs so I have started using their British site. Piping Rock only does immediate release tablets and it comes in all sorts of doses so you can make up amounts, When I was experimenting with slow release I found a company called Nature's best which does both fast and slow but is more expensive and if you go for immediate release they are no better than Piping Rock.
I would like to add that one of the side effects of Meletonin is headaces. I can not take it, I go to bed without a migraine and wake up with one.
Just curious if you have tried a combination of medications together to help treat the attack. Anti-Nausa, Anti-inflammatory, migraine and caffeine? When I go to the ER they give me all of these together with IV fluids. Since I have doubled my water intake and change the type of magnesium( I now take magnesium glycinate) things have gotten much better for me.
Also have you tired magnesium at a high dose and or multiple times a day?
I use both pill and injection Imitrix at a higher dose 100mg (generally 50 mg is given)
I also never skip a meal, add protein at every meal and use ice/heat on areas that hurt. One last thing I drink hot peppermint tea when I feel.one coming on.
Hello I've had chronic migraines since my 20s, I'm 44 now. The best advice I think I can give you is that it's helpful to remember nothing ever stays the same, not in this life. My migraines oscillate between chronic and episodic depending on treatment success and stress. I've actually just come out of a bout of migraines that lasted 6 weeks probably bc I just had a particularly challenging kung fu grading. The chances are your migraines will get better, they may get worse again too but that cuts both ways. There are a great deal of treatments options available, I should know I've tried at least 13 of them. I have actually been on Candesartan but it made my blood pressure too low, I'm on a CGRP injector now. Also Gps are better equipped than they used to be, I had many Gps who told me fundamentally migraines only last for 48 hours, it took 10 years to be believed and get help, you shouldn't experience that now.
You should give each treatment option at least 3 months on a high enough dose to see if it's going to work for you before you give up, unless you find the side effects intolerable.
Try to reduce stress as much as possible. Migraineurs tend to react badly to change so try and bring as much routine into your life as possible, regular sleep wake times, regular eating patterns and regular exercise. Basically try and make your life at bit boring for a while, once you've reduced the excitability of your brain you'll be able to gradually introduce different or more stimulating things back in.
Try to put your needs first for a while and be kind to yourself, the future will take care of itself. If your migraines don't get better you'll find you may be able still to work you just might need more flexibility from your employer, but for now try not to think about your career but that won't help you at this moment.
Bless you. It is a horrible condition. Mine didn’t start until I was 57 manifesting in post-exercise migraine which then turned into daily migraines. I have tried propranolol which worked for a couple of years and I am currently trying Candesartan which seems to be working quite well so far. I like it because I haven’t had many side effects with it. I have also started HRT because I am pretty convinced it’s due to the menopause. I hope you find some relief from it. I have had to give up exercising which I loved and was my sanity as I also suffer from depression. Don’t ever give up though - there is always hope 😊.
I was sure id sent a lengthy reply as my situ has a lot of similarities. Im on candesarten too and getting a bit of improvement. I now cant see my reply to you. Did you get it? Acceptance as the new normal has really helped me . As tried about 20 treatments so very refractive.
There are many Triptan drugs to try for the pain I hope you’ve been given one. Make sure you drink plenty of water to keep hydrated it will make a difference
Hi Bambi222I’m so sorry to hear about your chronic headaches. I too had Covid..in Oct 2019 and it is thought that my Chronic migraines came from that too. However I was having episodic migraines prior to that so it may just have exacerbated my situation. I am on 50mg x2 of Topiramate a day and also Naratriptan when I get migraines. The Topiramate took 14 weeks on this dose to have any effect but at last they have enabled me to only have to use ibuprofen or aspirin for my daily headaches which are more like tension headaches now thankfully. I also use ice head packs and have started cold showering. But managing lifestyle is crucial. If you are new to headaches…. find out as much as you can from the podcasts on the National Migraine Centre website because getting as much information is really helpful. It really helped me feel more in control and doctors don’t know your body as well as you do and everybody is different. Don’t despair. Things will get better. There are lots more things that can be done than there used to be.
Totally feel your pain, it was like reading my own story, Im not sure if I’ve had covid — wasn’t tested but I have never had migraine before this all started in early 2020!! Now every single day I either have a migraine or I’m in the exhaustion post migraine - they come on roughly every 4-5 days and last 48 ish hours then it’s the exhaustion which is worse in some ways!! I’ve seen everyone, tried everything and still suffer daily! The worst thing is I see colleagues at work who get occasional ones and yes all are bad but imagine never EVER having a pain free day!!! Im on propanalol, candastartan and amatriptalyne trial at the moment not working so far 😭 sorry not helpful but just needed to vent … it’s sadly nice to know I’m not alone, neither are you!!!
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