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Candersatan for migraine? Anyone else?

39 replies

Mortigua · 13/08/2020 20:39

It just doesn’t seem to be working and I’m up to 8mg now, expected to go up again to 16mg if my next blood tests come back ok so I guess I need to wait it out but honestly I’m so fed up with this!

Has anyone else had this and did it work? I am desperate but really don’t want anything that makes me gain weight and I had a bad reaction to propanalol so can’t have that. I’m wondering if the GP has anything else they would try me on but I am pretty sure I’ll be expected to stay on this and try the next dose up.

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Mortigua · 13/08/2020 22:19

Bump

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Lougle · 13/08/2020 22:31

I'm just started out with 2mg at the moment, hoping it will be doubled at the end of the month.

Previously tried Propanolol, metoprolol, topiramate, amitryptiline, nortryptiline, gabapentine,...possibly others. I have botox but Covid has meant that I couldn't have it for a while, too.

Tangledyarn · 13/08/2020 22:38

I found it helped to a degree. Was on 32mg for a few months, but stopped it as it wasn't helping enough unfortunately. I think like anything it's worth giving it a reasonable amount of time to see if it helps but if not there are other things to try. I'm on gabapentin, botox and pay for ajovy privately, the combo is working to a degree but I have tried literally everything else.

Ritascornershop · 13/08/2020 22:44

How often do you get migraines? Do you take triptans when you’re sick with them? I get Botox and take triptans.

Mortigua · 14/08/2020 06:26

Thanks for the replies.
Lougle I hope they work for you . That’s a lot you’ve tried ! Maybe they will work when I increase the dose. Are you having to have a blood test each time they up it too? I’ve got one today.

Tangledyarn, I hadn’t realised I could go up to 32mg, the GP said try 16next for a month (assuming the blood tests are ok) and then see if it helps . I’m really struggling with not taking ibuprofen after the aura stage - I usually take 3 at that bit which can really help but it says in the info to avoid ibuprofen if possible. This weather hasn’t helped but it’s been worse if anything .

Ritascornershop mostly before , during and after my period but then often in between too , at least half the time I’d say. Hard to be exact as they seem to linger on and off for days at times. Yes I take triptans , they did work really well but now I’m finding they work less. Lots of talk about Botox helping - is that via consultant or GP?

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Mortigua · 14/08/2020 06:33

I wondered if there is a sort of natural next step with what GPS prescribe , or if they will say they need to refer me elsewhere - I’m really hoping not as I know how long that would take.
I’ve been offered propanalol , pziften and the Candarsatan , Amatriptaline was mentioned but discounted. I’m wondering about Toperimate, is that prescribed through the GP? I didn’t realise Gabapentin was used for migraines!

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bellinique · 14/08/2020 06:59

Yes, I believe GP can can prescribe Topiramate. There are a few threads about it on here if you do a search. A friend of mine took it and said it worked well but it does seem to have some definite side effects so I've been holding out for now.

I pay for Botox privately as I've been told you have to try a lot of cheaper drug options before they'll offer that on the NHS. It helps but definitely doesn't get rid completely unfortunately.

For me it's a combination of Botox, Naproxen and Sumatriptan at the moment but even with that I still suffer.

Mortigua · 14/08/2020 09:02

Thanks bellinique. I guess it’s a bit like anti depressants and what works for some doesn’t for others. The GP hasn’t mentioned Topiramate as yet but maybe it’s better to work through others first due to side effects. Or perhaps it’s one I can’t have with anti depressants (I’m on Fluoxetine which I think ruled out Ametriptaline for me but could be wrong).
If Candersatan worked I’d be so happy to stay on it as I don’t get side effects other than a slight light headed feeling when I stand up which they warned about anyway . As these things go it’s a nice one but just doesn’t seem to work for me or not yet anyway . I thought I’d started to see some sort of improvement but it’s now got worse again. Fingers crossed for the 16mg working, it just feels a long old time !

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Mortigua · 14/08/2020 09:06

Naproxen is good too isn’t it if taken quickly. I have issues with heartburn so perhaps why I’ve not had that prescribed but when desperate I’ve had luck with the strong ibuprofen you can buy.
The other thing perhaps I could do at least in the short term is ask to try another triptan as it feels like Sumatriptans have stopped working.

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SisyphusAndTheRockOfUntidiness · 14/08/2020 09:21

I'm on topiramate, botox & magnesium (I buy the magnesium). I tried candesartan, it worked really well but I kept fainting, even at anything above 2mg, so they had to take me off it. Annoying. I find the magnesium helps quite a bit too. I think I looked on either the Migraine Action or Migraine Trust (?) site which gave suggestions, I asked my GP (who said the various suggestions all sounded fine, but to ask a pharmacist who would know more about drug interactions etc). I then worked my way through the list until I figured out what worked best for the least amount of money. I can't afford good quality COQ10 regularly which is a shame as it seemed to help.

Mortigua · 14/08/2020 09:32

Hi SisyphusAndTheRockOfUntidiness , thank you because I totally forgot I’ve got Magnesium and it did seem to help (I think!).
That’s a real shame with the Candersatan if it was working for you. I do wonder if the lack of side effects for me means it’s not doing much but maybe the 16mg will be the amount needed for it to work and obviously side effects especially fainting are awful so I’m glad not to have had that, must be scary.

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bellinique · 14/08/2020 13:53

I take Naproxen twice a day for about a week each month to try to prevent the menstrual migraine which is always so much worse than any other. It does seem to work quite well but I have to take it religiously starting a couple of days before my period.

It can damage your stomach and definitely could be bad for a heartburn sufferer but I'm also prescribed Omeprazole to take at the same time to prevent stomach damage.

I'm not sure about interactions between Fluoxetine and Topiramate but it would explain why you can't take Amitriptyline as that is an anti-depressant as well as a migraine drug.

Sumatriptan does seem to wear off in effectiveness and a different triptan could be worth trying. Sumatriptan has quite a short half life so that migraine can come back.

Frovatriptan has a much longer half life and I've used that with some success but I've bought it privately in the past and it is expensive! (Probably why it isn't often suggested on the NHS) My colleague is prescribed Frovatriptan though and has found it works well since the Sumatriptan stopped being effective for her.

Fingers crossed for the Candesartan! I'd be really interested to hear how you get on with it.

Mortigua · 14/08/2020 14:00

Thanks bellinique ,Frovatriptan is one I’ve never heard of! I’ve been buying the triptans online (I’ve been prescribed them before but it’s cheaper to buy online) . I didn’t know they got less effective , that’s such a shame as they really did work until recently and I’ve been carrying them around with me because obviously the faster I take them the better they work.

My worst migraines are also related to my cycle and I’ve had the worst ever this week related to that and probably the heat. I am now so scared of one coming back as it’s still there slightly, vision still off etc. I’ve given in and taken ibuprofen today just to be on the safe side but my heartburn is not thanking me!

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bellinique · 14/08/2020 15:32

Oh you poor thing, they are so awful aren't they and the heat makes mine so much worse too.

I actually read that you can take Frovatriptan as a menstrual migraine prophylactic. So a bit like I do with Naproxen, you take one or two every day just before and during your period regardless of whether you have a migraine.

That's probably something to check with a doctor before trying but I did it once (only once due to the cost) and I only had one day of mild pain rather than the usual days of agony at that time.

It might be worth speaking to your doctor about Omeprazole/Lanzoprazole for your heartburn if you haven't already. That's the last thing you need on top of everything else!

Lougle · 14/08/2020 17:25

I'm on Frovatriptan (Prescribed), Naproxen and Prochlorperazine for acute treatment.

Mortigua · 15/08/2020 07:12

Thanks bellinique, I think the bit where I thought the Candersatan was working was in fact just the good bit of my cycle where I don’t get so many issues. That’s really interesting about the use of Frovatriptan. I initially rang the GP asking for something just to take for half the month for that reason.
I really should get some omeprazole prescribed , I’ve had it for years and can mostly manage by avoiding food/drink that triggers it but my dentist keeps saying to ask for it so I really should!

Lougle , sounds like you have tried lots for them - I’ve never heard of that last one . They really are awful aren’t they.
I need to have this thread to hand when I speak to the GP next week (have to talk to them after test results about doubling the dose ) .

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InvincibleInvisibility · 15/08/2020 07:41

I love candesartan - changed my life! I take 4mg the morning and 8ng in the evening. Still get 1 or 2 migraines a month but nothing like as bad as before.

Do you take it all in one go? My neurologist prescribed it (Ive tried many many drugs in the past).

Mortigua · 15/08/2020 08:07

Hi InvincibleInvisibility, that’s really encouraging that it’s helped you so much !
Yes I take it all at once currently but so far I am only up to 8 mg and expecting them to double it again if the blood tests are ok- perhaps they will suggest having the 16mg in two doses. Oh I really hope the next upping them helps !
Do you take ibuprofen when you do get the start of a migraine now? I have struggled so much with avoiding ibuprofen but I know it can stop the blood pressure lowering effect so presumably stop them working so well. But it’s really made things worse for me as I used to take three when I got the flashing lights and sometimes that could really help lessen the migraine pain when it arrived .

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AllyBamma · 15/08/2020 08:23

Hello fellow migraine sufferers!

Worked out that I would always get one right at the start of my period due to the drop in oestrogen levels. Tried going on oestrogen (the pill) but hated everything about it, I’ve or been on the pill since I was a teenager and just loathed how I felt and would honestly rather the migraines. Then tried propranolol - didn’t work and felt faint most of the time. Then finally tried amitryptline very reluctantly as I was worried about being to drowsy to get up to my 20month old DS in the night and also the weight gain. 2 months in and no migraines for the first time in living memory, no noticeable weight gain and I’ve been able to be woken up on the occasion my DS has called out for me in the night. It’s honestly been life changing and I’m kicking myself I didn’t get on it sooner.

For symptomatic relief, I also recently switched from sumatriptan (I was up to 100mg which did work but made me feel very ill afterwards) to 10mg of rizatriptan in a wafer. Amazing. Kicks in so much quicker without the hangover.

InvincibleInvisibility · 15/08/2020 08:44

Yes ibuprofen tends to reduce pain when I get a migraine (but doesnt go away completely) or I take profemig as a crisis med which works 4 out of 5 times.

Other preventive treatments have never lasted longer than 9 months. Candesartan has been working for 2 and a half years so far.

Mortigua · 15/08/2020 08:46

Hi AllyBamma, that’s so good it’s worked for you. I think I can’t have that as I’m on Fluoxetine already and also I would (like you) worry about weight gain and not being able to get up to the children as I have a disabled child who needs care in the night as well as others who are up and down a bit still. It’s so good it’s not given you those effects though and I think I would take some side effects for less migraines .

I’ve ended up taking 100mg sumatriptans this week and needing more two hours later, I can cope with the after effects from it if it worked but it’s just getting less effective so I will be asking about trying a different one when I speak to the GP. I didn’t know they could stop working !

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AllyBamma · 15/08/2020 09:47

I didnt know either and I was so hesitant to try something new because I was worried whatever new drug I tried wouldn’t work and I’d be lying there in agony waiting for it to kick in, all the while the migraine getting worse. I’m so glad I tried to wafers though, as a long time triptan user, I can highly recommend them

Mortigua · 15/08/2020 10:18

Yes I know exactly what you mean! I’d not heard of the wafers only the nasal spray. In my case I don’t vomit (just feel sick )and tend to get auras which give enough time to get something in before the pain gets really bad but I would love an alternative to the Sumitriptan as it worked so well at first !

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AnnaMagnani · 15/08/2020 10:26

I've not come across candesartan for migraine.

For me the route was amitriptylline - didn't tolerate, propranolol - not eligible, topiramate - success!

Do make sure you have tried escalating the dose of each sufficiently before moving on to the next, my migraine consultant told me he was on a huge dose of propranolol to control his. My GP had started me on topiramate but not increased the dose and that was all I needed.

I do get some side effects from topiramate - I sometimes can't find a word, it's like I know what I want to say but the actual word is missing. It's a known side effect, 99% of people I meet will never see me do it, it mainly just drives my DH crazy.

It's supposed to cause weight loss but this very very very much has not happened to me Sad

Another thing is to never take more than 2 triptans a week (of any sort) or you risk overuse headache. I used to take them like smarties Blush and my headache is much better since I stopped.

Mortigua · 15/08/2020 12:17

Oh crikey I didn’t know that about triptans! I am cautious with when I take them as they make me feel rough but was thinking maybe I’m only half treating the headache so been taking more lately!
Weight loss as a side effect does sound appealing - I bet it wouldn’t for me either ! And I’d be so happy with Candersatan if it works because it doesn’t seem to cause any weight change at all as far as I’m aware !

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