I have an appointment with a neurologist next week to discuss advanced migraine prevention treatments on the NHS. I have been offered various treatments and need to choose which one I would prefer to try. I have looked through the information they have given me but would like people's opinions if possible please. The choices are: Ajovy, Botox, Emgality, Aimovig (all injections I believe) or Aquipta (tablets). Having looked through all of the information and researched a bit online, I think I'm leaning towards the tablets but I have heard that they can cause digestive issues. Has anyone had these? How effective have they been and what exactly are the digestive issues that people have experienced? Does anyone have any thoughts on the other options please? I need to make a decision next week and feel like I don't know enough about any of them to make an informed decision. Many thanks, Marie
Medication Options: I have an... - National Migraine...
Medication Options
I saw a neurologist after I had exhausted all the common preventatives, or so I thought. He suggested pizotifen, an older drug I hadn't heard of. That was a few years ago and I have never looked back, it was a game changer for me. Have you tried it?
Hi, yes I tried pizotifen as one of the first things back when I was 18 years old, I’m 51 now. As with most it helped for it but but not longer term. Thanks for your reply.
Hi I'm glad you're getting help with you're migranes, I've been a sufferer for 30 years and tried many many medications, I'm now on the tablet Aquipta, which my neurologist prescribed. It's early doors yet, as I've only taken them for 3 weeks, I'm not noticing much change in my migrane s yet, but I'm still hoping. I had the injections before this, which seemed to help for a time, but sadly, the migrane s returned. I'm a chronic migraine sufferer, and have pain most days. We're all different and react differently to meds, I've not had any stomach probs or digestive problems at all, with the Aquipta tablets. Good luck and hope you find something to help you.
I replied below.
I've had Botox, Ajovy and Emgality. The CGRPs definitely caused digestive problems. I have had IBS for over 30 years and it aggravated it, Ajovy and Emgality are supposed to have fewer side effects on the bowel as the other 2 CGRP's so I wasn't allowed to go on the other CGRP injectables. Therefore I would recommend the tablets because they leave the body very quickly so if you do encounter problems you don't have to wait a month for the sideeffects to wear off. Personally I like Botox bc it's relatively less uncomplicated when it come to sideeefects. Sadly I've just had my 10th round of Botox in a row this past 2 years and two years of CGRP's before and they've all failed ultimately. But they both really help many people and you never know if you might be one of them.
One word of warning about the CGRP's is that I think they gave me Bladder Pain Syndrome, I did already have Overactive Bladder. The drugs are relatively new and there is not much data supporting my experience, but there is some. I would avoid them if you have any current bladder issues.
Thanks for your reply. I don’t have any bladder issues but I have experienced severe constipation with previous medications. I have fibromyalgia too so am often in a lot of pain therefore the side effects are a bit thing for me. I really don’t want to add more things to my list of ailments if I can help it.
Yes I have fibromyalgia too and a few other pain conditions, I completely know how you feel. I really need something for my migraines but I'm really scared of trying anything new now because of the side effects. But at the same time I'm really struggling with the constant migraines it's catch 22!
It’s awful isn’t it. I’m exactly the same. You think you might have found something that helps but then it leads to something else instead and generally stops working after a while anyway!
Yes exactly, I think I've reached over 15 different drugs and injectables over the years. I've currently had 41 days of migraine out of the last 45 days including 9 out of 10 days I was on holiday for 😭. I'm 48 in April and wondering if this is going to be continous perimenopausal thing perhaps? Not sure I'm in perimenopause but I am at "that age" I guess!Constipation and CGRP are a problem though, I would avoid sadly or certainly go for the tablets at least or the Botox. On the upside the Botox has made me look younger too..
Hi. I’ve had Botox but not the others. Because I’ve only had it once so far I’m not sure how effective it will be after a few sessions-it’s supposed to take a few to be fully effective. But from my one session I can say I have fewer migraines & less severe migraines. I don’t personally know anyone else who’s had it but numerous people have commented their friend or relative is successfully using it. And no one has said they know anyone for whom it hasn’t worked. I believe the literature says there are many for whom it doesn’t work but I’ve not heard of anyone. Good luck with your decision. Katie
Thanks Katie. I was looking at the success rate on a report and it was around 52% worked, 48% didn’t have an effect which was one of the main reasons why I was unsure about it. That and the headache nurse saying it can lead to droopy eyebrows!
My doctor told me it reduced the frequency & severity for most people. So I didn’t try it for awhile because it didn’t seem worth it if it didn’t completely eliminate them. But my options were out so it made sense. Hope whatever you decide is successful.
If it makes you feel any better I've had about 8 years of botox and I don't have droopy eyebrows!
Hi, I was offered the Ajovy injections and whilst sadly I am unable to take due to being allergic, I've heard good things about them for those who can tolerate. A friend started the have 2 yrs ago and has only experienced a couple of minor headaches since. Both disappeared with normal pain meds after couple of hours.
I'm due to start Atagopant so Willard what happens.
Been on a BOTOX list for 2 years x
Thanks for your reply. I was a little worried about an injection mainly due to it being in your system and having to wait for it to leave rather than being able to stop it like tablets. That said if it’s likely to be the most effective, I’d do it.
That was definitely one of my concerns, that it remains in your system for 30 days until your next injection, especially with allergies. My allergic reaction lasted for 10 days, so there must be some lessening of the effects around then. The injection was very easy to administer and the results from those who have been able to tolerate are very good. your desicion of course, but would definitely keep it as a consideration x
If I were you I would look to see what the "goal" of thr medication is. For example I take Amjoy, it is considered effective if you have at least 65% less migraines. For me it has been 95% effective, yes there are some minor side effects, but most anything is better than the number of migraines I was having daily.
I have also stopped all of the supplements to I was taking.
For me injections have always worked better for me, since pill your stomach has to absorb and injections work much faster.
Good luck, Finding what works for you.
Thanks for your reply. I’m a bit nervous about injecting but I’m sure I’d get used to it. 95% effective would be great.
It's nothing compared to being in such pay many days of the week..Also dose has a lot to do with me and stopping migraines. Normal people it takes 50mg per dose. Me it takes 100mg to stop the pain.
Good luck
Very true. I take 100mg of sumatriptan so that’s good to know about the dosage. I shall make a note of all the these things and take them with me when I go to the hospital on Monday. Thank you.
So does the 100mg completely stop your migraine?If not then the next step should be ( at least this is what the many Neurologist give me) is an Imitrix injection. I take 1 100mg Imitrix pill with cold Pepsi. Wait no more than 15 min. Then take an injection. It's a very small needle, within 5min. It melts the migraine away completely.
This has kept me out of the emergency room and has really helped when I need it.
Update us and let us know what happens. Fingers crossed for you.
100mg of sumatriptan can take anything from 15 mins to 3 hours depending on the severity and circumstances to eliminate the pain. Every now and then it takes away the pain then comes back a few hours later but mostly works then doesn’t come back until the next day. Most of my migraines are in the early hours waking up in pain between 3am and 5am. If I take the sumatriptan and two paracetamol as soon as it wakes me up, I’m usually able to go to work at 8.15am. I do get some later in the day but nowhere near as often as I used to. The pattern definitely seems to have changed over the last year or two.
Have you had a sleep study? Do fall asleep early in the afternoon? It is classic for sleep arena to wake with head pain. I spend many..many years thinking I had migraines. I had a sleep study and found I have mod. To severe sleep apena..
Also, if you have any neck/back pain this can also be the issue.
It would really be great if they found out why you have migraines.
Anyway.. Amjoy has taken away 95% and the last 5% can be treated by over the counter migraine medication. I was taken high doses of magnesium and Fever few and I have stopped everything.. kinda a miracle. Hope you can find one also.
Thank you, this is all great information. I will certainly ask the consultant about all of these ideas.
Hello
What is Amjoy please? I thought it was a typo but you have used the same word in 2 of your posts so I don't think it can be
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