Gammacore device

[babs1234]

is there any one suffering from AF who uses a Gammacore device. I have been using one for many year for a headache disorder but recently read something about AF and the Vagus nerve. I was suffering every morning with palpitations/flutters and or AF. After reading there was a connection between the vagus nerve and AF I thought I’d give it a try and stopped using it 5 days ago. My heart rate seems so much better. I thought at first it was coincidence but not suffered AF since

[Rambler398]

I haven’t tried it. The Gammacore website appears to suggest the safety of the device in a variety of cardiac conditions, including an abnormal baseline ECG has not been fully determined.

[CDreamer]

Out of interest - what was the affect on the headaches? Have the headaches returned since stopping?

[babs1234 in reply to CDreamer]

I was diagnosed with Hemicrania Continua 10 years ago. The headaches were almost daily. The Gammacore eased the frequency and severity but didn’t stop them. I now have one about two nights a week and certainly more bearable. That so far hasn’t changed since stopping using it

[Blearyeyed]

I use a Gammacore for Chronic Migraines and Cluster Headaches and Dysautonomia. I use it as a prophylactic treatment each morning unless I have had a cardiac issue in the previous 24 hours, I also use it as a treatment as a head ache is beginning. It's quite effective alongside my other treatments.You are correct , because it stimulates your vagus nerve it can have a significant affect on your heart rate . This , usually, should be a relaxing one, I have found that it is helping to reduce my Tachycardia levels in the day which is why it is helping reduce my head pain scores.

Although, when I initially start to use it I do feel a few seconds/ minutes of higher heart rate and palpitations as the vagus gets stimulated , I combine my deep breathing technique with it and , thankfully, in my case , it seems to help my head and heart rate during the day. I also make sure I drink well before using it and relax for 15 minutes with my feet up before putting it on.

In my case , I don't use mine if I'm in AF or had other Arrhythmias ,or have been in the 24 hours before a Gammacore stimulation. At that point I find the Gammacore will make my symptoms feel worse and could potentially trigger another AF episode.

Gammacore can cause a very individual response , some Dysautonomia/ Tachycardia patients get a lot of relief from them , others can't use them at all.

It's got to be a thing of trial and error with any stimulation device including things like TENS because some won't have Af triggered , others will have various cardiac symptoms and should avoid them like the plague.

When it comes to dealing with how useful Gammacore is for you if it does cause you palpitations I think you need to discuss it with the Pain Specialist but also decide for yourself how effective it is for treating your Migraines as well.

The benefits need to out weight the risks like with all treatments.

If you couldn't move or do anything all day because of the Migraines without using your Gammacore but your palpitations were only short after using it it will be a difficult decision.

If the Gammacore doesn't help reduce your Migraines that much you'd be better off without it.

My Cluster Headaches actually cause my palpitations and my AF to get worse , and the AF and tachycardia trigger more Migraines in a horrible vicious circle. My Migraines also affect my speech and mobility.

Managing to get the right treatment for my cardiac issues and balancing my pace of life alongside that treatment actually helped reduce my Migraine episodes better than most of the headache treatments ever did.

I recently got trialled on the Ajovy injections, wasn't totally happy because they last a month and hadn't been tested on cardiovascular patients , probably because the main side effect in those with Migraine alone was ......raised heart rate.

I tried it for two injections , just to be sure my Tachycardia and increased AF episodes wasn't just from me getting used to it chemically.

After the second injection it got worse so I requested to stop it......but of course had to wait another four weeks until it had left my system.

As my Migraines and Clusters are triggered by my Dysautonomia and AF using the Ajovy ended up doing the opposite of it's job , increasing my head aches in another vicious circle ( that was a fun Christmas!).

I wouldn't try a month long injection again for anything now , unless it's been proven as safe to use on patients with cardiac issues and has already been used by cardiovascular patients .

I might try the weekly Migraine injections when they are available. They don't apparently have raised heart rate / Tachycardia as a common side effect.

Just thought I'd share that in case you get offered the Ajovy to help you in making your decision to try it. When I asked questions at the Migraine clinic and on the Migraine forums nobody else whom tried Ajovy also had AF or other arrhythmias, so I felt like a bit of a guinea pig.🐖😆😆😆

Take care , Bee

[babs1234 in reply to Blearyeyed]

Wow. Thank you so much for that information. I’ll certainly discuss it with my GP. I was thinking I was being silly 🤦‍♀️🤷‍♀️ x

[Blearyeyed in reply to babs1234]

Patients symptoms are never silly , even if doctors occasionally make us feel like that for reporting them.New symptoms need to be reported and you will often find with a new product like Gammacore , it's your experiences of side effects that help them get collected the data that improves the information about side effects in the box , and improves advice given to special patients with various conditions like us about better ways to use them too or if we you should avoid them.

You'll be doing your bit for Science.

I assume it was your Neurologist or Pain Clinic doctor whom prescribed the Gammacore.

It's actually worth calling through to their Migraine Department or helpline and letting them know too.

They'll give the best advice about what to do next and appreciate the info you are giving about it being a trigger for you.

The GP may not be able to make the best suggestions because they have less experience with these devices.

PS : We are like twins , I have Hemicrania Continua too......I also get Indomethacin, and I have supplemental oxygen for my Cluster Headaches.

I usually find HC gets worse when I exercise , so need to take my medication before doing something physical to prevent the HC flaring.