Has anyone tried vagus nerve stimulation Our oldest daughter is due to start a... — New Daily Persistent Headache

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  • Amanda, it was Gammacore. No one gave a reason for it stopping to work for me. X G

  • I gave Gammacore a trial some 3-4 years ago to no avail. It brought me no ease at all. As always, like medications, it works on some not on on others.

  • Thank you for letting us know. It is so easy to be overly optimistic and then the disappointment is awful if it doesn't work.

Hey all just quickly an update for rechem vendor This new T nd C s are there... — Australia New Zealand Cluster Headache Support

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  • Well done Dan, guess I'd need to come up with another interest. We can't all be amateur mycologists! haha :)

  • Hahaha you don't need to have any interest Hil or state anything about your research intentions lol, just the agreement will suffice.

  • Well done, that's wonderful news!

So scared to go to sleep tonight after yesterday. I ve put my oxygen on — Cluster Headaches Exposed

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  • Good luck mate!Seek out the local dealer for LCD!Supposed to work!

  • Have they had you try prednisone before....when I have a cycle starting they give me verapimil 240 MG per day...and a tapering dose of prednisone 60 MG for 3 days, 40 MG for 3 days, then 20 MG for 3 days....it completely stops them all together.

  • No I've had it for chest infections before and eat like mad on it and that's only 6 mg a day. So can you imagine me on 60 plus I'm chronic I'd be the size of a house.

Now waiting to go in for my first Botox session feeling a little nervous — Botox for Migraine support information

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  • Good luck ☺️

  • It was ok just sharp scratches

  • LOL -They ALWAYS say 'just a sharp scratch'...just before they stick a great big needle in somewhere! Having had 3 lots of spinal injections recently -6 facet joints, 1 nerve root block and 1 caudal epidural, i'm sure my Botox will be a doddle!

Hey im looking for botox for my migraine i see many get needles injected at... — Botox for Migraine support information

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  • They sometimes give you extra if you have a particularly painful area. I had 4 extra in my neck

  • Lucky you. I mentioned neck issues but she didn't do any more. Hope it helped.

  • I've got 3 prolapsed discs in my neck which I am having surgery for. It was only done for that reason

Was thinking I m having my nerve block done on Thursday Do you want me to ask... — Cluster Headaches Exposed

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  • I had one recently, and it didn't hurt much. It was four injections and done. It felt a bit tight when the liquid was injected into my neck, but didn't hurt. And afterwards it was a little sore but only if I touched the area where the injections were.

    At the headache clinic where I'm treated (there's only specialists there) there's only one guy who can do these nerveblocks, so I guess its a science in itself and it might vary from person to person, how well the injections are performed and also how little you will feel it.

    But from my first experience, it has been very fine and not very painfull at all.

    Heather, I think it is a very good idea to film it and post it in here :) Even I'd like to see how it is done :)

  • I've had it done every 3 months for about two years, it always feels like a positive thing for me as it and medication control most of my clusters and spring is my worst time for clusters so looking forward to it been done tomorrow. As long as the nurse agrees and no ones face is shown don't see why not. I'd quite like to se what the back of my head looks like too lol x

  • Sorry to disappoint you guys. Didn't get it done. Having it done in two weeks instead. Putting it off as I'm worse in spring so I can have full affect when I'm at my worst

Hi clusterheads I just sent a message to The Project asking for a segment on... — Australia New Zealand Cluster Headache Support

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  • This is a response I got from The Panel via PM 'Hi Douglas,

    Thanks for passing this on, we really appreciate it. We've forwarded your message along to our producers.

    Kind regards,

    The Project

  • Douglas i recommend you email them. I sent around a half a dozen pms via fb and each reply said the same thing. I got an actual personal reply after the email.

  • Half of it would be like the Benny Hill show, the other half like the Exorcist!

Took my shelby to see the neurologist yesterday she s only 7 and they put her... — Parent support forum of children teens suffering with migraines

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  • Xxxxxxx YzzzzzzDuncan it helps me depends on how bad mine is. It seemed to help her today but I think we got a stop on it before it got any worse

  • Xxxxxxx YzzzzzzDuncan it works for me, sometimes but as part of the migraine relief cocktail....

  • Awesome!

Has anyone become very disoriented during a really severe pain spike I was... — New Daily Persistent Headache

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  • That is terrifying. Have you had your blood pressure checked. I have bouts of extremely high and extremely low bp. With low bp I do feel like I am about to pass out. Luckily this hasn't happened to me yet. There was an instance early on where a medical procedure was so painful the Drs stopped treatment because they thought I was going to pass out.

    Do you suddenly feel very drunk before you pass out? That is the first sign for me that bp is too low.

  • I get panicky in a crowd if I can't find my husband and can't stand the painting f looking around. I just stay calm and try to step to the side so I can watch for him. I n ver move very far hoping he will find me

  • Robyneen Banks Nah, no notice. Could be in the middle of a sentence then wake up on the floor. A friend that suffered from adolescent epilepsy says it looks like a seizure w/o the muscle contractions. Brain just turns off and then starts up again. Feel very groggy and body temperature spikes right after. Generally back to "normal" after about an hour.

I recently started the MiRx protocol I ve had 7 treatments so far along with... — New Daily Persistent Headache

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  • I'm on an as needed bases now. So if I start to have an increase in pain that is sustained I can call and they will get me right in.

  • Have you explored self administration on needed basis?

  • So far it's not available here.

Can anyone describe abdominal migraines Can abdominal migraines manifest in... — Parent support forum of children teens suffering with migraines

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  • My 10 year old suffered for about a year and the pain was always just above the navel with nausea. GP put it down to stress! Then last September, the full blown migraines developed and he is now on propranolol as a prophylactic.

  • My daughter has had abdominal migraines for 3 years now, she is 9. She never feels a specific pain, just the feeling of nausea, which comes on very quickly. She goes very pale and quiet, and after vomiting a few times she has to sleep. She is on Propranolol twice a day as preventative, which doesn't stop them, but has made them more predictable.

  • Thank you ladies. My daughter is having severe sharp shooting pains in her sides that drop her into the fetal position. And recently horrible headaches which I think are the onset of migraines. I was told to research abdominal migraines but I really don't think it's that. But I do wonder if the stress of all that has brought on typical migraines

— Parent support forum of children teens suffering with migraines

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  • We are about to get an ekg. Is this something that would show up on that, or would a cardiologist be the one to ask about it?

  • POTS wouldn't show up specifically on an EKG but the tachycardia that goes along with it could. Cardiologists can diagnose it but only if they truly have a knowledge of POTS. If you join the group I mentioned you can share your story on a post and get lots of feedback. You could even ask if anyone is in your area and who they recommend that you see for an evaluation. It's a very specialized area and not many doctors understand and treat it. If you do sent a request to join let me know and I will message the admin to approve your request. It's a closed group with a lot of members from all over the country.

  • Thanks. She hasn't had none of the other symptoms other then the fainting spells which seemed to have morphed into the dizzy spells. I think I'll probably check that group out tomorrow though. You never know

I need some advice from people in the UK My daughter has been having chronic... — Parent support forum of children teens suffering with migraines

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  • We know our own children so we fight on to get the help they need

  • I get it. My daughter was on Homebound schooling for 3 years while we traveled up and down the east coast looking for relief. She couldn't handle the lights and noises of school! I was never so excited for her to graduate high school! We are battling a whole new set of medical issues that have kept my daughter from starting college. Praying they get straightened out. But I won't stop til My Girl has her life back!

  • Good for you

How about gamma knife radiation for occipital neuralgia — Cervicogenic Headache Support Forum

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  • Also suggested stim implant.

    Saw my face and tried something else.

    It's VERY rare.

    Mostly for trigeminal neuralgia.

    This sucks.

  • There's a stim group on fb that I belonged to. Lots of people report great success. Yes, it does suck. I was on winter break from teaching and my pain was pretty manageable. But now I'm back in the classroom and by mid afternoon I'm in a great deal of pain every day, and my usual dose of hydrocodone is not helping at all.

  • Doc tapped back of my skull and I went flying_

    Had pounding headache until I got home.

    Took a valium the size of a hockey puck and went to sleep with my sweats on.

    Too much.

Tuesday I see my nuero at jefferson for my first round of botox I had botox 2... — New Daily Persistent Headache

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  • I am trying Botox now. I'm on my second round . The last month of round one , I had only two horribel days which is very good in my case. and I love that there are few side effects . Good luck!

  • It helps me but only after the second round. I'm due to get it in two weeks, I can tell it's starting to wear off. Good luck!!!

  • I think it's great that you're trying it and posting about it to get others feedback. I haven't due to financial reasons but I have been trying Traditional Chinese medicine "herbs" with no luck.

lump appeared on the left side of my neck last night base of skull deep in... — Australia New Zealand Cluster Headache Support

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  • Hope all goes well for you and f#*ks off before it starts.

  • I can't use steroids, my CH hates (loves?) them, and body hates like Zeke. Got some psoriasis on my scalp, got a script for this steroid oil aptly called Davobet.. anyway gave me K8s and glands under my neck came up.. gave the psoriasis a fright though :P

  • ohh pred doesnt agree with my clusters. makes them worse . and then there's mood swings between hits . D3 regime seems to be work . after that im looking for shrooms . ill try anything once