I'm just waiting for my Neurologist to finish the paperwork to begin Ajovy injections .As well as Chronic Migraines and Cluster Headaches I also have an uncommon form of Chronic Dysautonomia called , Sinus Node Reentrant Tachycardia and Atrial Fibrillation which I am medicated for but causes me a high heart rate.
As people with CD say , " Standing is My Cardio!"
And to add to the horrible bundle of tricks I have Ehlers Danlos Syndrome, Fibromyalgia, Gut Dysmotility, B12 Deficiency Anaemia and Pancreatic Enzyme Insufficiency. ( I know , I think if I was a horse they'd shoot me!)
I have noticed that the most common side effect of Ajovy is a rapid heart beat which obviously isn't going to be a workable side effect for me with my Medical History .
Realistically, if this was a common experience for Migraine sufferers that have tried Ajovy ( with other health issues or migraines alone) I may be better contacting my Neurologist again and deciding not to try it before she goes through the process of getting the funding and doing the paperwork.
The reason I had to stop a number of the preventatives I was given was that they caused my Tachycardia to increase and made all of my symptoms worse , including the Migraines because of it.
Even the Beta blockers caused me this problem because when my blood pressure becomes too low it triggered a higher heart rate to compensate for it.
So my question is :
Has anyone on the forum experienced a raised heart rate , fast heart rate or palpitations from using Ajovy?
Has anyone with a cardiac condition used it and did it effect your cardiac problems , in a good or bad way?
If you did experience a raised heart rate did this only last for a few hours or days, or did that side effect improve after you had been taking the injection for some time?
And , very importantly, to anyone whom has taken Ajovy , was it a success ?
As , if I find that most people have found this useful I would be willing to trial it , but if there isn't much long term success experienced by users , or it made things worse for a lot of users , I know it's probably not worth taking the risk of triggering my other symptoms to try it.
Thanks so much for your help , Bee
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Blearyeyed
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I was on Ajovy for a year, then on Aimovig for another year then on Emgality for 2 months. Now back to Botox. First year was really good, then as time went by I just got worse and worse. Ultimately we think the CGRP's may have aggravated my IBS so much I developed Bladder Pain Syndrome (BPS). But we just don't know. In the first 6 months of Botox I got steadily worse, daily migraine for 6 weeks. Bladder Pain was destroying the terrible sleep I had left. I read somewhere being on the contraceptive pill could cause BPS so took myself off it, Bladder Pain rapidly improved, still had an overactive bladder but I'd had that since childhood. So put it down to the pill but then recently the neurologist thought it might of been the CGRP as it can take 5 months to leave your system. Which was about the time I took myself of the pill.We have exhausted all other drug treatments, I've been chronic for about 30 years now. She said in the autumn NICE will be looking at a small molecule CGRP, Rimegepant, this leaves your body in two days so might be worth a shot in the future, right now too scared to take it even if it is approved. Mental health is too poor at the moment.
However no heart problems, I have a high heart rate but they say that's bc I'm an anxious person and have lowish blood pressure, and I'm on Amitriptyline which I think can mess with heart rates.
That's interesting, especially the info in Rimegrpant.I wonder whether I would be better off waiting to try that medication because at least if it does interact with my other medications or trigger my Tachycardia, I could stop it and get it out of my system more easily without the chance of more long term issues.
I think I'll email the Neurologist and see what she thinks , great info thanks. Bee
To be honest in your situation I'd be inclined to wait. Problem is Aimovig and Ajovy are given in monthly injections with you being on it a year at least really, or at least that seems to be the funding structure. The downside is that who knows how long NICE will take to approve Rimegepant, if at all? And then how long will it take to become available ultimately? I think my neurologist was just trying to give me hope really!
Blearyeyed if you feel so nervous even with the thought of taking Ajovy, you would get tachycardia anyway! I understand why you are so anxious but just try it out, it might be alright, everyone is different and not many actually get a chance to try it.
Note: I don't know where you live but Rimegepant is becoming easier to try in the UK under new review, so if Ajovy fails, you could ask your doctor to try it. bbc.co.uk/news/health-66799682
Oh , I'm not nervous about it , luckily I don't suffer Anxiety about health things , but I just like to know as many facts as I can before I make a choice.I've got a lot of health issues , which is probably why I have such a broad range of Migraines , but that has got me used to testing and trialling treatments over the years.
The Rimegrpant sounds like a better alternative, I will just need to see if it will be used in Wales , or if I will need to get independent patient funding like I needed to with my Gammacore Unit.
It's so annoying , my Neurologist is in Walton but then I find many of the options available in England aren't available or are complicated to get in Wales.
Goodness poor you, what a lot to deal with. Everyone reacts differently but I have found Ajovy extremely good at reducing my migraines and generally getting my life back and am not aware of any side effects. Good luck.
Sadly, I experienced an allergic reaction within minutes of the injection being administered. Increased heart rate, chest rash,facial and tongue/throat numbness and an onset of Asthma issues. Disappointing as I had huge hopes for it's success.This isn't the norm so wouldn't let it put you off. A friend had immediate relief and it's been a life changer for her.
That is sad , I'm so sorry. Glad you friend is doing well though.Just out of interest , do you suffer from allergies or intolerances to other things ( food. Meds) or have you experienced allergy reactions from injections before?
Hope you don't mind me asking as it is something I also need to consider. I get a autoimmune hypersensitivity response to any injections or blood tests which I can cope with so it wouldn't be a problem , but I have had some bad Intolerance reactions to some medications too , so if you are prone to allergy rather than this being a horrible one off for you , it's something I should probably consider in my choice.
Hi Bee,Yes, I suffer from so many allergies - food such as cheese and sulphites (which are additives in so many foods). Prescription medications of about 20 and a suspected Pyethelene Glycol allergy which is in both Moderna and Pfizer covid vaccines in addition to medications, face creams, make up etc.
I've tried numerous preventatives (I've suffered from migraine since the age of 2 - I'm now 52 and hemiplegic migraines for past 4 years) all of which either didn't work or I experienced side effects.
My neurologist wanted me to try a drug which is currently from overseas and is unlicensed for migraine but side effects include weight gain, tachycardia (which I already suffer from), tremors and shakes, palpitations etc. I refused so he has placed me on the BOTOX list but I've been waiting 7 months and can potentially be waiting another year.
The only thing which has ever helped me was prednisone, a steroid which I occasionally take for asthma, but this isn't used as a migraine treatment any longer.
I'm currently on no meds for the migraine and just trying to cope.
Hi, I was on Ajovy for 6 months. It seemed to work well for 2 1/2 months but then stopped working.
I didn’t notice any heart rhythm issues (or other side effects) when I was on it but I wasn’t looking out for them at that time. I did have a heart attack a few months later after I’d stopped taking Ajovy.
The hardest thing I found was making sure the fridge was at the right temperature to store the injections.
It might be worth enquiring about Rimegepant, as has been mentioned above. I’ll be asking my neurologist.
Bern taking the injections for a year and a half and at 52, for the first time in decades I'm applying for jobs knowing that if I get one I won't be going off sick. Absolutely no side effects.
Cela fais quelque mois déjà que j'utilise ajovy et je me questionais aussi sur les palpitation cardiaque qui son soudainement arriver du 120-130 minutes en mode repos. Et je n'est aucune condition médical. J'ai passer des test car ceci a fais que je me suis senti mal à plusieurs reprise comme en chute de pression. Mais ma pression étais belle le seule et unique lien que je peux y faire ce son les injections d'ajovy. En plus de la fatigue bref pour moi il y a beaucoup plus d'effet néfaste à ce médicament que d'effet bénéfique. Mes palpitation cardiaque me rendre super etourdis. Je vais cesser les injectionS.
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