EggMan

Wanted to give an update on my experience with Emgality. My insurance fully covered the prescription. I took the three 100 mg injections (300 mg) about 3 weeks ago. The good: I experienced no site injection reaction. I had been experiencing 2-4 attacks per day. Within 12 hours, I began having very faint head pain around my normal times that lasted 30 minutes or so and was very tolerable. Around once a day I feel a faint headache. For me, Emgality works and has almost totally eliminated the pain. The bad: on about day 3 my left arm had pretty strong nerve pain the radiated from my left shoulder blade to my fingertips. My stomach has been upset a lot and digestion seems affected. Nausea and fatigue for several days but not really strong nausea. By week 2 these symptoms faded a bit and I’ve had some sciatic nerve pain. All in all, I‘m experiencing quite a few side effects. For me, the side effects aren’t as bad as the beast. Since I’m episodic, I figure if I use Emgality 1 week into my cycle it might eliminate most of my worst attacks. I can still go to work (commercial/industrial electrician) with these side effects if I take it a little easy. The side effects are more than I expected, though it’s possible not all of them are from Emgality.

Before getting a neurologist, I was mistakenly prescribed 360 mg of Verapamil for a year for episodic cluster headaches. Just comparing pre to post Verapamil, I can say I didn’t notice a difference and obviously being on it and staying on it didn’t prevent anything. Just as frequent, just as intense. I also started D3 regimen after start of cycle. After 3 weeks I only noticed a lot of indigestion and light headedness, but I didn’t get any bloodwork done to see if levels were low. Usually I continue taking whatever combination I’m on through a cycle; for fear of things getting worse. Oxygen (either prescribed or welding) and sumatriptan injections are my lifelines. I’m going to add Benadryl to my list of preventatives though.

I am skeptical of anything, but trying to stay optimistic. He’s the only neurologist I’ve seen though. The laundry list of pain killers and migraine medications I’ve tried he said were worthless on cluster headaches. He seemed a bit dismissive on vitamin supplements but almost high fived me when I told him about my welding oxygen and told me to keep using it. He said many of his patients can’t afford the medical O2 they’re prescribed. This gave me more confidence in my “under the table” setup in terms of safety and efficacy. Since I’m episodic and average 2-4 per day, I think the Emgality is worth a shot.

Neurologist prescribed emgality specifically for episodic cluster headaches. He said it’s one of the few (if not only?) FDA approved preventatives for cluster headaches. 3 consecutive 100 mg injections I believe. I don’t have it yet but am supposed to get it tomorrow. What have you read, heard, or experienced that makes you apprehensive to try it? Any advice or information on it would be much appreciated. Thanks.

Disappointed in myself that I’ve waited this long to pursue a referral and see a neurologist. Within 15-20 minutes of talking with him today, he diagnosed me with cluster headaches after hearing symptoms, seeing a clean MRI, and hearing self administered oxygen works as well as sumatriptan does. Not that the diagnosis changes anything, but I guess I wanted validation that I hadn’t “just” been having “headaches”... They are as bad as I’ve perceived them to be. He prescribed Emgality, which I guess is a series of 3 injections you would normally take at the onset of a cycle. I am a month into cycle so I might be too late this time. Hoping others have had luck with this FDA approved Cluster Headache treatment?

I’ve been taking the D3 regimen for the past 3 weeks or so. I have not had blood work done to check any of my levels though so maybe I’m not giving it a fair shot. I haven’t noticed a significant change for better or worse except some indigestion after all the pills. I’m pretty naive and ignorant to busting methods. Do you have instructions or a link? Are any methods “over-the-counter?” I live in a remote area without a lot of access to recreational or “specialty” items.

No, the only treatments that have helped are for cluster headaches. The few nerve blocks I got did give me relief for a couple days though. Avoiding alcohol, sumatriptan, just now “mastering” oxygen, but haven’t really found a preventative that has reduced frequency during my time of the year.

Rebounds (Or Medication overuse headaches) are a cycle of increased frequency of headaches, or intensity of headaches, because of medication use or overuse. I can’t say definitely that I’ve experienced rebounds, but have found myself in seemingly repetitive use cycles where I wondered if my sumatriptan use was increasing the number of daily attacks. I haven’t found much proof of sumatriptan causing rebounds but have read many cautionary tales from other patients. Oxygen seems to be the accepted alternative and works just as well for me. It is however much less portable.

I feel like I’ve finally mastered using oxygen and it’s made me less dependent on sumatriptan. I’ve learned everything from clusterbusters since my doctor was skeptical about oxygen. Here’s what works for me. Headache is usually bearable in under 5 minutes but I continue for 10-20 until I can’t really feel it at all. Breath in as deep as you can and out at deep as you can before you turn on your oxygen for 30 seconds or so (slow really deep breathing). Turn on your oxygen. I use the mouthpiece with no mask (Only breathing through mouth). If you use the mask you can breathe through your mouth and nose. The pressure only needs to be high enough to fill the bag in between each breath. If oxygen is blowing out the mouthpiece between breaths, you’re waisting oxygen and can turn down your regulator a bit. I highly recommend the actual “Cluster O2” kit. I messed around with a cheaper version that looks similar that didn’t work. Here’s a video that I stumbled upon. Sounds like he’s also a clusterbuster member but I don’t know his name. It’s a great tutorial: https://m.youtube.com/watch?v=PtFHRIQN17s Hope this helps. Stick with it! I’m glad I did. I almost gave up on oxygen many times but kept reading about it and trying different things. Good luck!

Glad to hear your treatments are working for you. I have a couple of questions for you. What’s the theory behind the immediate release and extended release Verapamil? I was recently changed from immediate to extended and the doctor said it was to keep a constant amount of medication in my system throughout the day. Also, I hear lots of warnings about sumatriptan. I use it somewhat freely. I split the injections into 3 and usually this gets me through the day. This will be my third “cycle” doing this. I am episodic for about 4-6 weeks. What am I risking by doing this?

Thank you for the feedback and responses. I have been having a rough go of 2-4 a day (mostly at night) for the past two weeks. Hopefully that means I’ll be tapering off soon. I actually have a doctor’s appointment in a few days and plan to pursue a diagnosis or referral to a specialist. Hoping diagnosis will simplify prescriptions and explanations. Any chance anyone has heard of or tried Methysergide? It is supposed to be effective for narrowing blood vessels preventatively, similar to what oxygen and sumatriptan do reactively at the onset. Something I’m going to ask about at the appointment. Thanks again for the information.

My general practitioner doctor has been treating me for cluster headaches, among other things. I’ve had nerve blocks with little to no lasting success and tried a dozen or so preventative medications. The only western medicine preventative that might work for me is Verapamil. Currently I’m taking 360 mg ER. I was randomly losing partial vision for 30 minutes or so not during a cycle and with no headache. After starting Verapamil that hasn’t happened in over a year. MRI showed no problems. He hinted I’d be better off getting oxygen myself; which I did. The welding oxygen provides some relief but I’ve been struggling with feeling like I’m going to pass out using it while also getting some relief. The best thing I’ve found so far is sumatriptan and D3 regimen at the onset of a cluster cycle. I know sumatriptan should be avoided. I only use them if the attack is really bad and/or I’m at work and need to work. I don’t feel like I get rebounds and generally only have to use them once or twice a day for the first 2 weeks of my cluster. I also split them in half. My question is, and the problem is, I’ve never been given a diagnosis. I’ve never been to a neurologist/specialist and my town is small and remote without specialists. I haven’t sought out a diagnosis because I feel like I’m being treated for cluster headaches regardless of a diagnosis. In the past I’ve been treated for migraines, occipital neuralgia, and cluster headaches. The cluster headache “treatment” has had the most effect. I’ve been suffering the “headaches” for 15 years, since 22 years old. I’m convinced I am having cluster headaches due to the severity, frequency, duration, and seasonal occurrences. I don’t get a red drooping eye or stuffed up. Can cluster headaches come with no eye redness/drooping? I just get a lot of pain, sweating, and, on the worst ones, ear ringing and once sided face tingling/numbness. I feel like I want to run off a cliff on the worst ones. Other than an actual O2 prescription, and given my treatments, is there a benefit to a diagnosis?

All the “fixes” get overwhelming. I’ve heard/read/tried prescriptions, vitamin regimens, psychedelics, oxygen, triptans... and many say “theirs” is the cure... almost everyone though is still trying something else or looking for something better. I’ve had many false positives over the years only to discover “the magic fix” doesn’t work the next time (maybe didn’t work the first time). Part of me wonders if I’d be better off accepting it’s something I have to deal with and make it through my “cycle.” Just got fully on the D3 regimen (realized it’s more than just taking a lot of D3). Going for oxygen tank this weekend and might give the RC seeds a shot...

Avoid nitrates, alcohol, MSG, and nicotine. I have had good luck with verapamil too but seem to build a tolerance. From what I have learned here and on my own: try melatonin at night (might have helped me), try welding oxygen (going to try my next cycle), I wouldn’t try Sumatriptan (imitrex) unless your doctor gives your heart/circulation a clean bill of health. Sumatriptan stops my headaches %100 of the time but I’m episodic and split my doses.

I asked my doctor (GP) about oxygen a couple years ago and he seemed resistant and I didn’t push. He prescribed me the Sumatriptan injections instead and it’s been the first thing that has stopped my pain in its tracks. I have begun splitting the injections. I have a doctor appointment tomorrow and plan to ask about the oxygen again now that I’ve read so many positive results...