Latest Preventative now not working

[PurpleTranmere]

I have tried so many preventative treatments and all of them other than my current one candesartan have had no impact.

Candesartan has helped reduce the number of migraines and the severity until now. I am on 16mg a day and due to low blood pressure I can’t increase my dose further. Since the start of 2023 I have only had 2 days when I haven’t had a severe migraine. Has anyone else been on candesartan and then found it was not helping?

I am also now having 3 types of visual aura almost all the time I have one. I also have continual ear pain and tinnitus in my right ear due to my migraines. Really not sure what to do now I am under a neurologist and awaiting Botox treatment but don’t think there’s much left for me to try. I always have a headache and suffer with hemicrania continua as well.

[Cara71]

oh goodness I really feel for you. I know you were so hopeful that candesartan was working for you. I'm still on it, 12 mgs, but it's not helping at all. I'm under two neurologists, one for migraine and one for vertigo. The former said if it's not working at 12 then it won't ever work, she also didn't want me to increase whilst trialling Botox as "too much for my head". The latter said I need to increase to 16. Utter confusion. I don't have another follow up til April so am completely lost, I haven't had my blood pressure checked recently. I also have 24/7 headache/ migraine: Botox has not helped me either. I really hope it can help you when it's finally approved,

[PurpleTranmere in reply to Cara71]

My migraines improved with candesartan quite quickly on the lower dose then I would know I needed to increase the dose as they were getting worse again. If you haven’t had any improvement at 12mg I don’t think it’s a medication that is going to help you. I’m so sorry that Botox hasn’t helped either.

If I come off the candesartan my neurologist wants me to try Lamotrigine- an anti epilepsy drug but the side effects worry me.

[Cara71 in reply to PurpleTranmere]

i mentioned that drug to my neurologist as heard it was good for vertigo but she said they didn't use it, not enough evidence but if your clinic does then might be worth giving it a go. I don't know about the side effects. Does acute medication help your severe migraines? Nothing works for me (incl triptans) and as a consequence I've been off work for a very long time which is not good and depressing in itself.

[PurpleTranmere in reply to Cara71]

I am under the Walton Centre in Liverpool which is a specialist neurological hospital. As I’ve tried all the other preventative treatments as he put it you are now scraping the bottom of the barrel.

As I had to have months of no pain relief as instructed by the neurologist painkillers do now help I usually take ibuprofen and paracetamol. I have to severely limit how many times I take them in a month though, trying to stick to once a week. I found I had every side effect you could get with triptans so don’t take them.

[Blearyeyed]

Have they checked your Nutrient levels in the last few months with blood tests?My migraines and especially the tinnitus and aura improved a great deal when these were checked and I was found to be Vitamin B12 deficient.

Blood tests worth requesting are FBC , Vitamin B12, Vitamin D , Folate , Iron/ Ferritin and Magnesium.

Very low levels in these , or deficiency, can both cause more migraines and neurological symptoms but can also , especially when considering Vitamin B 12 and Folates reduce how well and how much of the dose of your medications you absorb effecting how well they work for you. It's also a bit of a vicious circle as taking certain medications can effect how well you absorb the vitamins you eat or take as well.

If you have a chronic condition or take regular medication that can affect your absorption you have the right to request these tests.

It's good to keep an eye on it and also get a copy of your test results, as your GP will often say things are fine when the results are low/ normal or borderline when you still may need to take supplements to stop it getting lower and to help reduce your symptoms.

Hope you get relief from the Botox when you get it

[PurpleTranmere in reply to Blearyeyed]

Thank you so much for your reply. Had bloods done recently all ok other than iron stores which have been low for 19 years so I take iron supplements each day. It has settled down the last few days so hoping I have a bit of a break until the pain hits again.

[Blearyeyed in reply to PurpleTranmere]

Are you getting an Active B 12 test , or just the Total of Serum B12 , it's worth checking.If you are constantly low or Anaemic for years you could have a functional B12 issue .

This needs an Active test , as the Serum B12 which is the usual choice of blood test shows all the B12 in the blood so this may appear normal , and often it's the B 12 that is in useable form, or Active as called in tests that is deficient and the nutrient isn't getting to were it needs . A lot of people with Chronic Migraines and recurrent Anaemia despite supplements find they have this functional B12 issue , or have Pernicious Anaemia despite negative results.

It would be a good idea to request an Active B12 test if you have been on iron so long , in reality they should have given you this test long before . I'd get the test then consider trying a B 12 and Folate and Vitamin D supplement after it so it doesn't effect your result.

My migraine pain activity reduced by about 25% but most importantly my vestibular migraine and aura reduced by about 50% by them finding this deficiency and my starting the B12 injection treatment.