devonrex

As a note, I have had what I just assume are angry shadows, hitting into the 8 area during normal shadows for a few minutes then dropping back to the normal annoyed shadows.

Same as above, sunct sounds like it fits, seems like you are getting to know that side of the primary headache family tree, which sucks.

The sadly ironic thing, at this point I wish it were something like a tumor, then it could maybe have been removed by now and not still have these. Welcome to the worst family to be in, sorry you are here, but there is a ton of info and help collected here. Talk to your neuro, there are a few things that may work, ketamine as mentioned, dhe infusions, prednisone taper to verapamil, rc seeds (their legality seems all over the place)

They or your doctor might be able to get one for a 3 month or whatever the battery life is on them trial, but from my and a few others I have seen here, it is pricey for a self limiting device.

Just to add, got a free trial and it did nothing more than give me an elvis sneer from the muscle contractions and nothing else.

To note, I was diagnosed years ago, so that is another.

Was reading a study that linked autoimmune disorders as higher in adhd people and biological siblings, curious if there may be a link to clusters? How many here know they have adhd or are pretty sure?

The eye shifting is pretty normal for rem sleep which means Rapid Eye Movement iirc. But stress and the season can really be doing it. I would second the above with getting high flow o2 with a tank and not the concentrator, at some point that concentrator is not going to cut it, hopefully it doesn't get there, but better to be ready if it does.

I have found after exertion or stress, once I begin to relax I get hit. Sleep that hypnic jerk can be just as you are hitting rem and the body thinks it is dying and it does a quick nerve pulse/jerk. Rem is a trigger for many. I have found stress can either trigger or ramp them up a lot.

I have not had a drink in 6+ years any alcohol is a 100% trigger and will jack a hit up if I have any during. Never had a chance to try one off cycle, since chronic I have no down time. If I do get a break I likely will not chance it.

Team caffeine as well, I am on team chronic and go through so many monster 'zeroes' sugar free so not guzzling calories, taurine can act as an anti-inflammatory so I think that is why it helps in conjunction with caffeine. Caffeine has never been a trigger, strong smells (chlorine, bleach, pinesol etc) Alcohol, the rest just after exertion, fluorescent lights can trigger but tend to just ramp it a bit. O2, opioids (does not kill it but rounds off the sharp edges, even a 9 to an 8.5 is a huge jump for these.) been getting high dose lidocaine injections (nerve blocks) all around my eye, bridge of nose, forehead, cheekbone, temple once a week for the last couple months and they also seem to lower the overall pain, but no abort from it. (4% lidocaine in large doses, looks like I have been stung by bees). Everyone here is helpful and so much advise and simply support here. Glad you found us, also a shame you had the need to find us. Welcome to a most horrible club to join.

What I find odd, is many of the things we get relief from (Caffeine, hot showers, Verapamil) are all vasodilators...not constrictors. So, if this is caused by dilation of the maxillary artery it seems odd, that more dilation would help? I mean the single best abortive many have found, oxygen, is also a vasodilator.,

I will get in the shower, sit on the floor and keep turning up the heat everytime I get accustomed to it, sitting it covers my whole head and shoulders and I get it to nearly blister heat and it can help a lot, never abort but cut the sharp corners off. I know I have read on here others who use hot showers or baths to help them as well.

For the longest time, I used to get pain/tension right at the base of my skull on the right side and within minutes the beast smacked me upside the head. Been a few years since that has happened, but that kinda stopped when they went insane on me after stopping a drug the name I forgot but anecdotally has seemed to jack up a lot of people after stopping it. Likely it is because the low grade pain and ache from the shadows have overridden it for me, but you can use it as a signal to get your ass on the o2 and maybe hit before it even starts.

Mine started off with a couple a week, but long, 2.5 hours from the start and still are. Since I got no breaks even in the couple a week, they were chronic from the start, just low end of the spectrum. I had been t-boned and trashed my neck the weeks preceding the ch, so I have felt that may have been the 'trigger' but who knows. A butterfly farting in Argentina could have been the cause. They do sound like them. As was asked do they ebb and flow or ramp up to the level they stay at until they 'drain away' at the 10/20 minute mark? That is usually one of the main things they ramp, stay at that peak until they drop off again. Cold turkey caffeine stoppage can cause withdrawal headaches as well. That may be a precipitating factor as well.

Sounds a bit like my experience, scrambled them for a month, including less hits and lighter ones, the next month was a random schedule but lessened, the three and fourth month they began getting steadier and came back fully by the end of the 4th month, mind you I had some home dhe injections for a few weeks after.

Ok, zapping and killing nerves, is this not just a gamma knife with a different name or nerve transection with a different name? both of which have shown to help in the short term but remissions are high. Which both also have a pretty high likelihood of facial paralysis (permanent) with extreme facial droop among other side effect possible. Also, the three branches of the trigeminal nerve, two are sensory only so have no interaction with tendons or musculature, providing sensory response to the orbital of the eye and above and mid cheek/face. only the mandibular has any motor function and that is to the jaw, one of the places that gets hit less than those two above. So growing into a tendon seems a bit out there as a diagnosis as well.

Speaking of a bit older. This one resonates as well.

Glad you found us, sorry you had to find us. I have read that yes, we do get ptsd from these things. How can you go through some of if not the worst pain a human can experience and not be full of those feeling of dread, of panic of fear over the next. I have had many instances of this over the years being chronic. Like I am going to lose my mind. So many here are so knowledgeable and can steer you right. This really is an amazing place for those in the trenches and those helping those in the trenches.

Instead of resurrecting a 5 page deep 1 year since last post, post decided to start another. So I will start with these 2 that have helped me through some really hard times. Make that 3

Had that, occipital block, all around the occipital bone my one neuro did it in like 8 places all around it, it cause a massive hit as during the injections could feel the pain hit those nerves and shoot right into the side of my head, was numb back there a while but did not seem to blunt anything.

So, neuro is using me as a bit of a guinea pig, 2 weeks ago gave me about 6 4% lidocaine injections around my eye, yesterday it was 8+ with some extra at the tmj along the cheekbone, top of temple, all along the eyebrow and under the eye. It seems to deaden the pain in those areas of an attack but not prevent it totally, so it helps to a degree, still get pain deep under my eye, top of forehead and back of temple by the top of my ear but not much anywhere else. So it is something to maybe keep an eye on or give a try. Anyone else had similar areas nerve blocked?

Not a bad idea, but it could be the same as any headache neuro, ward or specialist I have seen has fluorescent lights?

I have peppermint oil and a couple other 'pain relief' mixes with peppermint and cleary sage etc, it does nothing for the pain per se, but the scent and the warming feeling helps me tolerate attacks better.

Something to look into, if you can get a DR to prescribe an 'odd' dosing that autoinjectors and such do not normally come in, you can sometimes find a pharmacy to compound it for far cheaper than the premade vials and dosing. But at least here in Canada, it has to be a dosage that is not normally available premade, it is a bit of a loophole. Since you will have to prep the injection yourself, you can still use a 'normal' dosage.