I’ve been having chronic migraines for the last 20 months. I have tried taking Pizotifen, amitriptyline, and am still taking atenolol and venlafaxine. In June, I had a bi-lateral GON block which didn’t work. In August I was given my first dose of Botox. As Botox is given in two doses, 3 months apart, I haven’t had the second dose yet, but the first dose doesn’t appear to be working.
I think CRGP injections are going to be my only option if Botox doesn’t work. I’m worried about side effects of CRGP injections. Has anyone had experience of these? Is IBS the worst side effect? If IBS starts as a side effect , can it be treated/cured while taking CRGP?
Also, are CGRP injections just stopped after a year on NHS?
Any advice and information would be greatly appreciated. 😊
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Roonie22
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I’ve tried ajovy and aimovig and didn’t have any side effects at all. The only thing I haven’t tried is Botox I have waited a year and still got a wait of a year and a half.
I've been on several CGRP's I found my IBS did get worse. The first time I had it I talked to someone on the forum about bc our neurologists disagreed it was a sideeffect, but both have since changed their minds. There is also the probability that it gave me Bladder Pain Syndrome, but that is likely to be more of a risk for me bc I already have an overactive bladder.
Botox rarely works after one session in my experience, you really do need 2 sessions at least, often the first session can make you worse rather than better, so give up on that yet.
They couldn't treat my IBS as there is no treatment for IBS generally. So far my neurologist is holding out for Rigmengepant bc it is s small molecule CGRP so it can leave your body in a couple of days. We may attempt it again then.
Well I've had chronic migraines for over 20 years so the reality for me is pretty much whatever meds I'm on I remain chronic, so having migraines over 50% of the time. However they are definitely worse without treatment. I have dipped below 15 days a month a couple of times with Botox but unfortunately this has always meant they stopped the Botox and then within a couple of months I get a lot worse. I prefer Botox to CGRP because it doesn't have many sideffects comparatively and over all I have similar results. I've had Botox on and off for years sometimes it's brilliant other times it doesn't really work, it's very hard to access it effectively bc my migraines cyclically go up and do anyway. I am very treatment resistant, probably because they weren't treated well enough early enough, so I'm very much in favour of hitting them hard and as early as possible, this is what I'll fight for if my kids develope them!
Gosh, I really feel for you suffering for over 20 years.
I also feel I have been left until it’s too late to get a grip of them. I’ve had migraines since I was 15, and two or three other periods in my life when they became chronic, but the last two years of them being chronic has been the worst. And I completely agree about fighting tooth and nail if my daughter develops migraines at anytime. It does become exhausting fighting for yourself constantly, doesn’t it?!
It’s useful to know that Botox can work better sometimes than others.
Yes I've had them since I was 5, became chronic in my late teens/early 20s took 15 years to get a doctor to believe me. Same with my other conditions.Campaigned for 6 years to get Botox, but only got it when NICE finally sanctioned it by which time I was pregnant so couldn't have it, they stopped me breast feeding at 6 months bc I was getting so many migraines and they wanted to start it.
We delayed having children bc I was so ill, so I was 38 when I had my first child realised I wasn't going to get any better so just had to go for it really.
As far I can tell the NHS does recognise chronic migraines now though so referral is much quicker than it used to be at least!
The medical world are finally taking migraine seriously. It’s incredible really that it’s only in recent years that medication is being developed specifically for migraine. It’s people (like you) fighting and campaigning that brings migraine to the forefront.
I hope the Rigmengepant gives you some relief. And let’s hope there’s more options and solutions for our children’s generation.
I've been taking aimovig injections for two months and at last have a huge reduction in the number of migraines. Unfortunately my hair is definitely falling out (something noted by some others on this treatment) worrying but it may be worth it. Constipation is manageable with the odd senna tablet. I haven't had any IBS symptoms. I will be sticking with the injections for now because its so good to be living life without the constant threat of migraine.
That’s great that the injections have reduced your migraines. Thanks for sharing the side effects you’ve been suffering with. It’s such an unpleasant choice to make between migraines and side effects, isn’t it?
I tried Ajovy and Aimovig, neither gave me side effects which was just wonderful given I react to all the old oral preventives but sadly neither helped my chronic migraine. Am currently trying pzotifen but it's making me feel rubbish. I tried venlaflaxine for a few days and gave up due to the nausea and night time waking . It's such a rollercoaster.
I tried Pizotifen years ago. I put on weight with it and it didn’t help my migraines either. I’ve been waking a lot at night, I didn’t connect it to venlafaxine, I thought it was my insomnia getting worse! That’s something I’ll definitely bear in mind. It really is a balancing act! What a shame the CRGP injections didn’t help your migraines. Have you tried Botox?
did you not get any nausea with venlaflaxine? I've just tried Botox again this week , first round was private and didn't work so I didn't want to pay out for another, but now I'm under the NHS and they wanted me to give it another go....
I had some improvement with Botox but a significant improvement with CGRP injections. I have had some weight gain (about half a stone) which may or may not be related. No problems with digestion or hair. Still have some really bad days but also have very good days now which makes the condition easier to manage.
I use galzanumab and have been for near two years with a 6 month gap ( recommended) . I’m 50 and have had chronic migraine since before I started school, so perhaps 46 years. Like you, I have tried everything, every oral preventative, anti depressant, beta blockers, anti histamines, epileptic drugs, alternative medicines, all the triptans , nerve blocks and botox and nothing helped. But CGRPs have been an absolute godsend. Although not completely gone, 25+ migraines a month to around 5. To get this relief I’d take any side effects but luckily I have none.
My advice is don’t knock the Botox quite yet but just know that there is always CGRP to try if Botox fails.
My first try with CGRP wasn’t overly effective but I tried a couple of different ones and have settled with galzanumab.
Good luck to you and everyone else still trying to find their preventative x
Thank you for your reply. I’ll keep going with Botox and hopefully the second dose will be more effective. How many Botox doses did you have? I suppose that the different CRGP injections might have different side effects as they have different impacts on individual's migraines.
I have been on all the meds and have had the procedures you mention too, so can empathise with you there. I could list many more, but I'd bore you 🫣
One thing you didn't mention (not sure if you have tried) is a Multi Cranial Nerve Block? I don't think many places offer this however. It worked for me briefly, then stopped.
So going back to your question on CRPG, I am currently on Aimovig (erenumab) for approximately 9 months. During that time I have suffered terribly with IBS and constipation. To compensate, I use dulcolax to help, which is pretty effective. They say a max of 15mg of this per day, if you find you suffer with this, but be aware of cramps when using it. For IBS pain, I have used Buscopan, which is pretty good. I tend to buy these in bulk, as it can get expensive in shops.
Aimovig certainly helped me reduce the frequency of headaches and intensity. Hopefully you manage to get some relief from your suffering too.
Thank you for your reply. I’ve never heard of Multi Cranial Nerve Block. Is it similar to a GON block?
It sounds like you’ve found ways to manage the side effects of CRPG injections. It’s really handy to have tips to help potential side effects should I have CRPG injections in the future.
The multi nerve block is similar as it does provide the Occipital Nerve Block (GON), but it is many more injections on the head. Can't remember exactly how many injections, but it's roughly 20. There are very few places that offer this though - one is NHNN.
I am very fortunate I have specialists who listen and care. It took me many years to fight my case, but it is worth every effort. Being bounced from neurologist to neurologist is frustrating.
I hope you get the chance to try crpg at some point soon. It has a very good success rate, although everyone is different. The side effects are worth it to reduce frequency/ intensity for sure. I had to do 4 months solid of headache diaries before they agreed to continue on it. I also had to do regular blood pressures, as I think it can have an effect on that - although no issue for me.
There haven't been any reports of side effects. That's the beauty of CGRP: no side effects and it works. I've been on ajovy for a year and a half, and it's truly changed my life.
I'm afraid you can't say there hasn't been any reports, unless you mean youve not had any... Every medication has side effects, whether they are major or minor. This is one of the main reasons people are told to read the enclosed leaflet in medications. 😁
I used Aimovig and Nurtec, but now use Qulipta and Nurtec. I had no side effects for over a year until I switched to taking 60 mg of Quilpta daily and noticed after about 30 days a reduced appetite. I have lost 6 pounds so far with no effort. Honestly another 5 pounds and I'm at my ideal weight. For me, no migraines and losing weight make it a miracle drug.
Are you in America? I just googled the two drugs you mentioned and Quilpta isn’t available in the uk. Nurtec (Rimegepant) has been authorised for use in the UK but I don’t think it’s widely available here yet. Interesting to know that combination is really working for you.
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