Side effects from preventative medicine.

[Jeffner]

Hi!

I am struggling to find a preventative as I seem to be very sensitive to even small amounts of many of them. My problem is the side effects affect me to the point I can’t get to work or take my children to school, so I am unable to stick with them. Always feel like a failure that I can’t tolerate it, and feel the judgement of the disappointed neurologist.

Really want to know if other people had only been able to take some drugs for a couple of weeks ( propranolol) or a few days (topiramate)? Also if you do have severe side effects do you take time of work/childcare till it gets better, or are you able to get to work/childcare whilst getting used to it?

I did manage with candesartan for a couple of months, but it made no difference to my migraines and I developed a daily cough so was told to stop. Amitriptyline was tolerable, but didn’t really help either and when the dose was increased I had suicidal thoughts and thoughts of self harm (it was really weird) and was advised to stop taking it. Tried Botox for 2 years, and it sort of helped but not sure.

My migraines are daily, usually I have a weekly bad one (lasting 3-5 days), so I really need to find something that helps. I manage to get to work most of the time (part time) and get the kids to and from school (most of the time), but spend much of the rest of my time in bed. I really want to live a full- time life not part-time

I do loads of other stuff for my migraine, (vitamins, herbs, gentle exercise, diet, cefaly, massage) and they do chip away at the problem, but I would love to find something that makes more of a difference.

Thanks

[Onthemove1971]

Curious if you are taking magnesium ( there are many types, I respond best to glycinate, as directed? At least 3x a day? You could take it, wait about 2 months I'd you do not notice a difference increase it. Many Neurologist have told me up to 1500 mg daily. Yes that seems like a lot, but it doesn't usually help at low doses.I have also added Feverfew, it has taken my years to find what works. I researched and studied Feverfew vs Butterbur. Butterbur was taken off the shelf in the UK so I said no thanks.

I recommend you listen to the "heads up" podcast. There are many free episodes, which have really helped me a lot. They also have guess speakers.

I have not had any luck with using common medications to help stop/avoid migraines.

Best to you.

[Jeffner in reply to Onthemove1971]

Thanks for your help, so glad it’s working for you.

I have tried magnesium glycinate and malate another time and sadly they don’t help me, they upset my stomach too.

I do listen to the amazing! heads up podcast too. Your right it is extremely helpful.

I was very wary of trying butterbur for the same reason, but my neurologist suggested it (and I am a bit desperate at the moment) so I thought I would try it. It does seem to be helping a little, but takes a couple of months to fully work. Not going to take it long term though as it does have some risk.

Hope you have a lovely day

[troy04 in reply to Jeffner]

Hello Jeffner

I don't think taking Butterbur is a good idea because most Butterbur supplements contain pyrrolizidine alkaloids (PA) which will damage liver and other organs and may cause cancer. I know this will make you worried but I had to mention it. If PA free Butterbur is tried then it is probably ok but the point is it is hard to find PA free butterbur as manufacturers may claim so but most of them still contain PA. Even small amount of PA can be bad for you, hence I would stop (even if a neurologist has advised) as it is not worth taking such a high risk.

Doing gentle exercise is not hugely effective preventing migraine. If you can make your heartbeat faster - depending what type of exercise you can do - such as cycling or running it works significantly better than taking prescription medicines (recent studies have found this). Even if running/cycling is not possible, try to walk as fast as you can for 30 min and it will be beneficial.

After trying 10 different migraine prophylaxis (including Amitriptyline, Pizotifen, Propranolol, Gabapentin etc) I have noticed doing exercise (to raise heart rate) is the only thing that controls my terrible headaches.. and even if I do such exercise only 2 to 3 times per week it still helps a lot.

Also, not eating meat, dairy, deep fried food, wheat and legumes will certainly help.

[Jeffner in reply to troy04]

Thanks for your help.

Glad exercise works for you, I have tried many types. Sadly for me certain exercise (running, hitt) is a trigger. I do get my heart rate up daily, either rebounding, walking at pace and kettlebells, also do Pilates and yoga. Have to listen to what my body needs day to day though as some days I have to take it easier

Diet wise I have tried loads and being low carb, vegan seems the best for me but not a cure. Just lessens the intensity of the daily migraines, but no help with the frequency or the migraine attack (head choppers).

I have purchased a pa free butterbur, so my plan is to take it for 2 months and see if I can break the cycle and then decide if I should continue to take the risk.

The most annoying thing with migraine is we are all different and each one of us needs a different treatment.

Thanks

[Onthemove1971 in reply to Jeffner]

Just curious.. with the magnesium, did you take it as directed? At least 3x a day at a loser dose?I did the same, I took it 2x for years and nothing. But as soon as I took it 3x, that was the magic.

Also do you have trouble sleeping? Do you wake up a number of times? If so consider melatonin and see if that helps. Or if you wake up with a headace, dry mouth and feel tired you should get help for sleep.

One last thing, have you seen and you may have to pay to see a Migraine Specialist? They only treat patients with migraine.

Best to you.

[Jeffner in reply to Onthemove1971]

I did try 3 times a day (magnesium glycinate), but my stomach couldn’t handle it. I might try again but start with once a day and work my way up. Will let you know how I get on.

I sleep really well, and have a very strict time to sleep and wake. Very boring, but does help.

I have been to the amazing National Migraine Center, they are wonderful. I saw an NHS neurologist recently too, but they want me to try some other drugs. NMC say ajovy is next on their list, but it’s very expensive. Would love to try it though.

Thanks again x

[Onthemove1971 in reply to Jeffner]

Yes I would encourage a low dose 1x and then work your way up. Also, do you have an injectable triptan? This has really helped me. I start ( as soon as I feel a pain tinge) with cold Pepsi and 2 OTC migraine medication. Drink quickly, a can. Neurologist say it is the cold in your system fast. I wait, if pain gets worse I start a triptan ( many to chose from- imitrix or max alt, have helped the most). I wait a little and use ice/heat. I drink hit peppermint tea. Dark room, no noise. I try 1 more and after that I have a injection. This usually stops it instantly! I would take this any time. It has kept me out of the ER.

I also use a roll on pepermint oil that I smell, especially if I am someone where there is strong negative smells.

Do you have neck and back pain?

Hope this advice helps.

[Jeffner in reply to Onthemove1971]

I use frovatriptan and domperidone, works for most attacks if I catch it early. Can only take 8 triptan days a month though and 5 anti inflammatory days (ibuprofen or aspirin) so some days I am stuck if I am having an attack. Would like to find something that helps to decrease the frequency though, as I think my brain is just in a very bad habit.

Peppermint oil is the best, I use this too

Have had my neck checked and when I can afford it go get a massage, which chips away at the problem but doesn’t solve it.

Thanks so much again

[Onthemove1971 in reply to Jeffner]

I really think you go slow with the magnesium if you do not get help change the type. You will know if it is working when each one becomes less painful... then you will start to get less in a month. I wonder if ice could help your back neck.

Take care!

[Chleo11]

Hi Jeffner. Sorry to hear that you're having daily migraines. I too suffer a lot from medic side-effects. I know the feeling when the head doctor starts making judgmental comments such as 'but you need to persevere to see if it works!'. I suppose that it means 'you're not really sick, are you?'. You were given medic with some of the harshest side-effects there can be. My head doctor has tried at each appointment to give me topiramate, which I refused. A private consultant I've seen said that he doesn't prescribe Topiramate because of the side-effects. I had Candesartan too and I realised that it had more side-effects than I thought after I had stopped it. Botox made things worse for me. Personally, I even get unbearable side-effects from vitamins. The only supplements I can take are the ones that come as sprays.Have you pushed your doctor to have further tests and actually see if it is indeed 'only' migraines you have? I guess you're a woman, so did you do some checks on the hormonal side of things?

I wish you all the best!

[Jeffner in reply to Chleo11]

Sorry to hear your struggling too

Have had a brain scan a few years ago, heart monitor and blood tests. They won’t check my hormones till I am older, but have tried various hormonal contraceptives to try to help, the more a sort of helps. So think they have ruled many things out.

Thanks again and hope you have a clear headed day

[denadico]

Metoprolol seems to be working good for me. I'm experiencing one, sometimes two migraine attacks a month. Down from 4 or 5.I'm saying "seems" because I've been more careful avoiding chocolate, bananas, nuts and some high tyramine containing fods.

[Jeffner in reply to denadico]

Glad that’s helping you, did you get any side effect to begin with? If so were they debilitating?

Also how was you blood pressure before taking it? I have naturally low blood pressure.

Thanks

[denadico in reply to Jeffner]

I started it in the summer and I thought I felt a bit tired when going repeatedly inside and out in some very hot and humid days. Now I can't confirm that, noting of notice.The dose is very small, only 25 mg. twice a day. Haven't noticed any difference on my blood pressure when I forgot to take it.

[Ceedee]

I used pizotifen for a number of years ( till menopause ) no problems 😊

[Jeffner in reply to Ceedee]

Thanks for your help, I think that’s the next medication on the list. Very happy you found something that worked

Just to clarify did you have side effects with this drug when you first started it? I really want to know what level of side effects to put up with, as I have found many of these drugs are as bad as the migraines I am trying to stop.

[troy04 in reply to Jeffner]

Before starting Pizotifen (Sandomigran), you may want to warn others that you may get angry very easily. Lots of people can't control their anger while taking Pizotifen. Also, taking less than 1.5mg/day may not provide positive outcome on migraine, so before you give up you may want to keep an eye on the dosage.

[Ceedee]

No side effects at all, some people said they gained weight but I didn't , good luck

[Onthemove1971]

Checking on to see if anything is helping you?

[Jeffner in reply to Onthemove1971]

That’s very kind of you

Nothing helping yet....

Didn’t get on with topiramate due to side effects, which is always disappointing.

Magnesium glycinate taken 3x a day didn’t help, but sure it’s worth trying for others.

Butterbur doesn’t seem to be working well either, but going to give it more time.

Hoping to try one of the cgrp preventatives and see if that’s better. Or pitzofen is next on my neurologists list.

Hope your well and have a happy new year

[designer111]

Sorry to hear this. I have just given up on trying pretty much all preventatives that didn't work. Am fed up of putting so much meds into my body. The doctors do not recommend anything else. I have now stopped preventatives and am taking homeopathy and milk thistle (to rejuvinate my liver after so many meds). Not expecting miravles but if I have no results with all those meds, i am better at having none i my system at all. Sorry to be negative!