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Showing content with the highest reputation since 07/28/2020 in Posts

  1. 2 points
    It will be interesting to hear reports of how this is working for folks. First I will be curious how it is covered by insurance since there is no data on clusters. It will also be interesting from a cost effective standpoint if taking daily or a couple times a month is similar to monthly injections. Be aware this drug will stick around later in the presence of calcium channel blockers like verapamil and prednisone may accelerate metabolism. Experience still gathers on the CGRP class of medications for use in clusters. I suspicion the mechanism of action the drug takes will make a difference. If nothing else is helpful and you have access I vote "hell yeah, give it a try".
  2. 1 point
    Hi memememe (nice nick) Here's how I explain the pain to people, might help clarify things with your partner. Have him think back to when he had a muscle cramp in his calf muscle, most people have had at least one in their life. Then, ask him to double that amount of pain, and have him think about how when a muscle cramp starts, it starts out of the blue with no warning. And then, for the 30 seconds or a minute that it lasts, it is all you can think about. It is an all consuming pain, nothing else exists but the muscle cramp. Then, have him double the pain level again. Then, shrink it down to where the pain would fit in his palm, but maintain that same intensity. Now, ask him to imagine that in his eye and lasting for 3 hours. Mox
  3. 1 point
    Personal experience update: Nurtec was effective for the first 24 hours or so, but didn't make the 48 hour goal. Last night, within the 48 hour window of initial medication, the first visit of the beast came at the usual 1:30 AM time. I think it was not as intense as usual. Pain only, no rhinorrhea, conjunctival injection, or lacrimation, and I spent 10 minutes on the tank before heading back to bed. Normally I'll get three visits during the night, but I'm on the tail end of my cycle right now, so I can't use the reduced attack count as a guide. So maybe it still had some kick left in it? Not sure. Tonight I'm going to wait for the beast before medicating, just to see how fast it actually works. I probably won't update again unless something radical is noticed. I'll keep using it for the next couple weeks till its gone. Bottom line for me is, if insurance doesn't cover this it's a moot point. Sumatriptan is faster , cheaper and much more predictable, oxygen is a good backup. Considering the retail cost, I'm disappointed in my results so far.
  4. 1 point
    All good questions @Pebblesthecorgi What I can tell you right now regarding cost/insurance: My doc and I really didn't consider it at this point. The first script wound up being free with a doctor provided coupon. The pharmacy listed the retail price before the coupon at $1003.99. GoodRx says I can get it as low as $864 (retail without coupon or insurance). A package contains 8 pills, and that's supposed to last 30 days. Maybe for the average migraine sufferer, sure. But for us CH folks, at best, that's 2 weeks (assuming it holds true to the data, 1 pill every 48 hours). If my insurance doesn't cover it, at least partially, I won't be getting a refill. At that price point I can't justify the cost! If it accelerates my metabolism, I'm ok with that for the moment. I don't take verapamil as it did nothing for me and I already take atenolol (beta-blocker) for blood pressure. The beta-blocker increases weight gain, so an increased metabolism might offset that - it might also cause my BP to rise (I'll keep an eye on that). And that could explain the difficulty I had getting to sleep last night. I did ask my doctor about Emgality, the once a month injection. He didn't seem enthusiastic, but said he'd write it if this one didn't work out. (I suspect he had a sales guy in from BioHaven pushing Nurtec, but no one from Eli Lilly has been around to make such offers for Emgality. In any case, Emgality lists on GoodRx for $559 with a coupon. Still only going that route if insurance covers most of it.
  5. 1 point
    Early review - Took the Nurtec last night - I was just starting an attack, but it wasn't in full bloom. As you all may know, it's a dissolving pill, so you just put it under the tongue and let it melt. It has a light mint flavor, not unpleasant.Fully dissolves in about a minute. True to the literature, within an hour the pain was gone. So not as fast acting as the triptan injection, but it did seem to be effective and without the heavy chest sensation I get from the triptan. The only side effect I may have had - I had a hard time falling asleep. Hard to tell if that's just the stress of the day or the meds. (Actually one of the the things I like about triptans, they make it easy to fall back asleep.) For me, the beast predictably comes two or three times a night, in my sleep. First attack is usually like clockwork at 1:30 AM. Random attacks happen during the day or late evening. So the big test was, would I make it through the night without the beast knocking me out of bed? Mostly, yes. I woke once, but not from pain. I did have a mild attack when I woke on schedule in the morning. I settled that one with 5 minutes on the O2 tank. Again, according to literature, if you do get an attack, the intensity should be reduced, so this is also consistent. So - next thing to look at - according to the literature, I should get through 48 hours with no attacks. We'll see after tonight. Stay tuned.
  6. 1 point
    @EggMan thanks for posting! I’m glad it’s working for you. When it comes to side effects, anything seems better than clusters. I am still unsure if I am episodic or chronic, so I don’t want to take the emgality and make things worse for myself. Sounds like you have a good plan in place. I’m happy there is potential for relief from episodic clusters with this medication. Onwards and upwards kat
  7. 1 point
    Thank you for this information.
  8. 1 point
    Thanks everyone for your support. The clusters have seemed to ease off. I've only had one or two minor attacks since I started this thread. Very weird. My migraines are easing a bit too (knocks on wood). My daughter is down for a visit this week, so I've taken some time off work. That might be helping things. Hoping to bust soon, once she goes home and I have a week clear of triptans. Which may now be possible. Hoping to get 3-4 busts done in fairly quick succession. Hope everyone is enjoying the summer. Mox
  9. 1 point
    I've had cluster headache for about 4 years now. I've tested a range of different treatments, both from the doctors and some more experimental, but nothing's helped much. I was travelling to India for work about six months ago, when I was recommended an ayurvedic doctor who had been successful in treating an acquaintance' migraines. Although I was a bit skeptical, I thought 'why the hell not' and went. The doctor had mixed a range of different medicines for me, and I went there for three days for a treatment that consisted of warm oil being dropped in my forehead and rubbed in to the skin around the neck. Already after the first night did I feel better, and after only 3 days of treatment I felt better than in months. Since then I only had slight 'shadow' attacks, so went to an ayurvedic practitioner in my hometown in Europe, and I still have most of the medicine left, and so far I've been able to avoid the clusters. I have no idea what all the medicines contain but one of the bottles have a list of ingredients, so in case someone finds this interesting I post them here: - Terminalia chebula 0.79% - Terminalia belerica 0.79% - Emblica officinalis 0.79% - Swertia chirata 0.79% - Curcuma longa 0.79% - Azardirachta indica 0.79% - Tinospora cordifolia 0.79% - Woodfordia fruticosa 2.534% - Madhuca indica 2.328% - Acacia nilotica 1.1672% - "Guda" 29.14%
  10. 1 point
    Got it. Beer does the same for me! Missing my IPA’s right now. Thx for the reply.
  11. 1 point
    Many find that looking down toward your feet helps. If you are a 'rocker', this seems to come naturally. I tend to rock and stare at the floor with unfocused eyes. Just me perhaps. When you first begin, exhale with force - add a crunch at the end. This gets repeated for several breaths. Push out the CO2 and suck in the O2 deep. Hold a few seconds and repeat. Fast, shallow breathing is usually not the fastest or best way to abort. You want that CO2 gone ASAP. How fast you go just depends on you and how your head responds. I will start out fast and hard, then let up till I hit a sweet spot - one where I notice a significant reduction in pain. I will repeat that pattern for that hit. For me, it varies as to the time to find the 'spot' that is going to work with each hit. In short order, you will know what works for you. I use the tube as I cannot stand the mask on my face. If I see that the bag is filling too fast, I turn down the flow. I may go up or down a few times in a hit. Pain worsens, dial it back up and get to work. Pain lessens, begin to relax and go with the flow. I vary the flow from 25lpm to 5lpm. My post is at a rate that matches my relaxed breathing post hit. Often, if I am tired, it will be at 5LPM or lower. CHF will likely be along to direct you to a paper on how to use your O2. I haven't time atm to find it. But, the above will get you going. To conserve, adjust the flow on your regulator to match your breathing. That is all. To make you visit as short as possible, do the forceful exhale and deep inhale. If the bag is filling too fast, turn the dial down till you catch up. The focused technique is important to me. I usually get a good abort in about 5 minutes and then 5 minutes post. For a really bad one or one where I had to wait to hit the O2. that time can be doubled. If you can, grab some caffeine on your way and chug it. It often helps speed the abort. Not sure if you use can caffeine or not, but if you can, it helps. Which conserves your O2.