Yes contact your GP initially if nothing else if you did have a problem you would need a written referral on to a specialist. GPs are Mr Joe Publicās way into the health care system anyway. Just because so few GPs understand MAV most are very savvy with most other things and particularly common conditions such as cancers and diabetes and understanding the mechanism of the heart. Donāt write them off just yet.
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I found venlafaxine stopped migraine and daily headaches.
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@flutters not sure why Iāve never been given this one before, maybe because Iāve had other SSRIs and am currently on sertraline also?. Will have to give candasartan a proper try before I change, but will mention to Dr S on my next consultation.
Could be lots of reasons why not. Venlafaxine is an SRNi I think. Itās not in common use for migraine here in UK. You certainly wouldnāt be given it whilst on Sertraline. Consultants each have their own favourites so what they suggest depends on their individual preferences. The neuro I saw doesnāt rate it for migraine at all. I did ask.
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Thanks @Onandon03. Any thoughts on candasartan?
Venlafaxine is very popular on this site, but maybe itās mostly the US crowd. With respect to MAV symptoms I did well on it. Iād recommend it.
@Jojo65 comes to mind as a UK one. Both @nin and @mav who have had some success with Venlafaxine are in Southern Ireland. Most family doctors follow NHS guidelines which suggest Propranolol, Amitriptyline and Topiramate. In the full (Scottish) version Venlafaxine is included with a few others but as you say it seems much more popular in the US. Helen
Candesartan thoughts? Not really. Donāt know anything much about it. Only @gidlabu did do well on it recently and now he seems to have scampered off into the sunset to get on with his life. You can read his diary.
Thanks @Onandon03 and @flutters.
Iāll persevere with cand, Iām only on 4mg and itās only been a been a month. Long way to go.
Iāll will get my heart checked out, itās a long shot, but Iām still waiting for that miracle cureā¦
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Scamper scamper
Yes I was getting much better anyway but candesartan did seem to help - Iām still on it for the time being with minimal side effects, although you can get postural low blood pressure when you start - ie if you reach down to the bottom shelf then stand up quickly you can get lightheaded. Other than that - no problems.
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Thanks @gidlabu. Just been reading your diary, so good to hear how u have improved. What mg of candasartan did u get up too?
I went up to 6mg but that was too high - my BP was getting low. Settled on 4mg daily.
My headaches are my worst symptom, itās always really been the main issue. There are constant, no let up ever.
Re CGRPās, Iāve tried one round of amovig when it first came out, with no success.
One neurologist I saw recently said to try ajovy, and the maximum dose in one go? E,g 3m worth in one hit.
Has anyone here had any success with these?
Dr S suggested not to currently and stick with candasartan, where Iām on a low dose.
Iām getting desperateā¦
Try using the Search facility for each individual injectable. Lots seem to be having some success with them though many still find they require a Default device and oral medication in addition. Unfortunately most injectables are still not approved for use in the UK and those that are are only available in private clinics where they are very expensive. NICE turned the expense down flat. Botox seems popular for chronic headaches although eligibility depends on failing at least three orals and due to Covid treatments are currently suspended. I think whatever one tries medical wise one also has to comply in terms of diet and lifestyle changes to give it the best chance of success. I have no idea about the injectables but but both Botox and orals need time to really work fully.
Oh any progress on the Hole in the Heart option?
Thanks for that. Iāve had Botox tooā¦ didnāt help. Understand Iād have to pay for it myself.
Have an appointment with a cardiologist tomorrow. Reading up on it more it looks a real long shot. Gonna see what he says anyway.
Had my eyes lasered a month ago in case it was thatā¦ it wasnāt.
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You certainly seemed to have already ātriedā most of the options. My next questions would be āfor how longā and āwas that long enough?ā. Botox can take up to a year at quarterly sessions to build up and work so I am told. I think I read somewhere AMovig , (who thinks up these daft names I can never remember?,) Three monthly doses will indicate. Pays to be thorough.
Yep I imagine the heart condition would be a very long shot indeed. Anythingās worth a shot though eventually you may have to settle for MAV āreasons unknownā much like the majority. Please do let us know how you get on.
Think I did 3 months of amovig.
Botox just once, not sure why my neuro didnāt recommend carrying on, I think because mine is chronic. It was Dr M Weatherall.
Just want it to goā¦ hence trying everything.
@Jojo65 and @MNEK18 both chronic too. They swear by Botox. Worth keeping on the back burner. Then thereās Cefaly. Talk to @flutters on that one. Best not to run out of options.
I have cefalyā¦ more of a distraction than anything. Will enquire about Botox again.
Thx
Are you using it regularly? It takes a while to build up.
Botox is good stuff. Itās not the end all but Iād rather be with it than without.