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CH past two mornings after lowering Verapamil but still very mild.

This is especially anecdotal, but in addition to my longtime baseline tinnitus, 1.5 years ago or so I started getting some WTF!!?? crazy, crippling, deafening loud blasts in one ear that would last up to 24 hrs before receding. The ear doc recommended steroid shots in the middle ear. I did the series of 3. It seemed to help some. Years ago I had read that about the only supplement that could 'maybe' help with tinnitus was Astaxanthin. So I got some and took it religiously, but that brand became unavailable, so I switched to another. Then 6 mos ago I went off the new brand to see if it was causing a rash. It wasn't, BUT at that point my loud blast episodes completely ceased and haven't returned since. Could be coincidental, but I strongly suspect the new brand of astaxanthin could have been backfiring on me! It was cheaper than others - hmmmm.

I can see why you would be apprehensive about the Lenire thing, since "a small mouthpiece delivers mild electrical pulses to the tongue, activating the trigeminal nerve to enhance neuroplastic changes in the brain." Gotta say, that does sound like a risk. I remember when I first developed tinnitus. I've had a lot of very bad, chronic pain in my life, but I was sure I was going to go crazy and/or kill myself from the tinnitus. Maybe you'd had it a long time and haven't figured out a way to cope. For me, it has almost completely faded into the background. This was true for my brother, too, who as a professional musician was deeply bothered by it. Last time I asked him how his tinnitus was, he said, "I don't really think about it unless some asshole asks me how I'm doing." Haven't asked him again. Noticing mine more right now, of course, but I know it's going to fade back into the background.

After I noticed I had tinnitus, I just started with noise, more specific, rain, storms, water noises when trying to fall asleep. It made me used tonit again (because I’ve had it as long as I remember, I’ve only ever known the ringing ‘sound of silence’) just try to get used to it, I honestly laugh at myself when I recall that period, I didn’t have CH yet. I know what it is and it is not easy, I know, but today I’d wish I only had tinnitus. try apps like resound tinnitus relief, it helps.

I wanted to see if anyone has used the Lenire treatment for Tinnitus and whether or not there you experienced any negative effects with regards to your cluster headaches

Thanks! I've increased the dosage of KLOW slightly to what I'm seeing others doing so I'm now getting per day: 2.5mg GHK-CU 500mcg BPC 157 500mcg TB-500 500mcg KPV Forgot to update yesterday but it was CH free, and that was just 3 days after lowering Verapamil. I did not lower it yesterday just to see if it was a fluke but there was again no CH this morning, so I will lower it today. I've had this other type of pain in the trigeminal area (temple, cheek, above/behind the eye, sometimes back to the neck) in between CH for years. Same side as the CH, completely unilateral. It used to come in months long episodes (3-4) and then it was gone for a couple of months until returning again. Last 2 years its been constant, sometimes I get 20-30 minutes at waking up until it starts. It's like the whole left side of my head/brain is inflamed, and there is a burning sensation and some pain in the trigeminal area constantly. With that I get intermittent stabbing pain, so its like a sawtooth pattern where I'm constantly on 3-4 in pain and then there is second long stabs that brings pain up to 7-8. When its really bad the stabs can come like every 10 seconds and go on for hours. Sleep sort of "resets" everything, but then the pain comes crawling back fairly quickly. I have tried Indomethacin against this with some success, some of the stabbing stopped but after I had another bout of CH it feels like its almost back to where it was before I started taking it. Felt a lot of improvement from KLOW on this pain in the first couple of days but effect seem to be wearing off. Gabapentin has also worked for this sort of pain, but only for 3-5 days before I've needed to increase dosage, until side effects become intolerable. I'm convinced its neurological, my neurologist first claimed it was muscular but I've been to literally hundreds of chiropractors and other sort of mechanical practitioners (neck, shoulders, jaw, teeth etc etc) without result. I think I've tried all of the medications you could think of except Pregabalin. I've also tried hundreds of supplements and things like progesterone, methylene blue, cyproheptadine, aspirin etc, and nothing seem to work.

I'm really interested in this approach and your findings. Please keep updating us like you're doing. Every bit of knowledge helps!

CH again at 6, a bit more pain this time but nothing like a full blown attack, lasted maybe 2 minutes. The lingering pain does seem to be improved still.

Was woken up by CH again at 6AM but the pain lasted for less than a minute and was very mild compared to a regular attack, no oxygen needed since I started taking KLOW. I am now on 1+1+2 of 80mg Verapamil and will continue to decrease when I reach a CH free day. I am fairly confident its the lowering of dosage triggering the CH. I "shouldn't" be having CH at all this year, I've been having episodes every two years since 2019 but had a couple of weeks in May this year that was very stressful and caused the CH to flare up.

No problem! Yes, I am not vouching for this either, I should have said this right away: There is zero research / safety profile for these peptides in humans, this is highly experimental. I did however wake up without CH this morning, but impossible to say if its the KLOW, it really shouldn't be after 2 injections. I'm on day 6 of lowering verapamil, so it could just be that I stabilized here on the new dosage. Will drop another tablet today and see what happens.

Thank you for this!!!! Not vouching for or saying anything against it. Looking forward to reports. This page seems like a pretty good discussion: KLOW — research profile · Peptide Research

Anyone tried some of the peptides that's becoming popular now? I started KLOW yesterday, which is a blend of peptides that targets multiple pathways involved in healing, inflammation control, and cellular repair. I've only taken one dose, but this mornings attack did seem dampened roughly 50% compared to prior days. I also feel a lot better after the attack, my day is usually ruined by lingering pain, but now its very manageable. Remains to see if this is one of those things that works great for a short time to never work again later, or if it gives some longer lasting effect. Will report back.

when I finally stopped taking verap i dropped it off from 120 to 0. I did and still do have oxygen, 5hr drinks and a few other tricks I use to abort when needed. I do not get any more or less clusters but I did get rid of most of the side effects. I was up around 1020 a day and that sucked. If I were to go back in time I would not have started taking it at all.

I am trying to taper down but as soon as I drop even 1 tablet (I'm on 2x80mg three times per day) I start waking up at 6AM because of CH. I have tapered down before, and it was a pain in the a**, because just like now it seems to aggravate the CH with each lowering of dosage. I am wondering if I should just drop it to zero right away and push through the headaches that will undoubtedly come, I have oxygen at home. Anyone ever tried that?

Nice, I hope this keeps working for you

Hey guys, I purchased this device and have been using it for 40 minutes a day when I wake up. I lay on my back eyes closed in a dark room for the 40 minutes using the green light mode. I have been Migraine free since I have started using it. Its been a few weeks now without a migraine which for me is amazing. I have been having migraines 3 to 5 days a week for 40 plus years.

I get that way from time to time. Good fishing in Wi

Thanks to all that responded to my post in Theory and Implementation, some how deleted the post when responding. Think my head isn’t firing on all cylinders. I will continue to read and follow along for now. Foggy head and tired Cheesehead in Wisconsin :|

Its 6am, just about to make coffee - reading this, man - awesome awesome awesome and may your remission continue long into the future. There is nothing better than reading of a fellow warrior getting pain free. Made my day. Cheers brother Jimmy! Craig.

@FunTimes very helpful to know this. Thank you!

DMT use in Cluster Headache: Interim Analysis of an International Survey (S23.003) | Neurology "Among those who used DMT to abort attacks (n = 85), the majority reported it completely eliminates pain (67.5%) and that it works every (45.7%) or almost every (35.8%) single time. Over half reported that DMT worked in under 30 seconds, and all participants reported either no change or an improvement in their health with DMT use."

Depends on if you want to meet and talk to other clusterheads attending or listening to speakers more. Friday will be more of a meet and great with everyone attending, Saturday is more structured and the presentations begin. You do have breaks and will mingle with others between speakers on Saturday.

If I could only attend one full day of the upcoming conference, would Friday or Saturday be preferable? Thank you.

Sorry for the long absents. I have been busy at work. I have increased magnesium to 800 a day a couple weeks ago with no side affects. (Should have mentiond that). After reading what you had responded with at the beginning I increases my vitamin d to 25000 per day. After about 3 days I went into remission I believe. Not sure if it was natural cycle or the increase. Regardless the vitamin d regimen greatly helped lower my pain levels this time. Only wished I would have tried it several years ago. Thank everyome here for there help, knowledge, and resources.