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Posts posted by CHfather

  1. 3 hours ago, bwunk said:

    my insurance won’t cover more than 9 pills a week.  So if I run out I am in trouble.  

    I need to ask my dr about oxygen. And I would like to try mm

    The pills barely work in any event.  If you ask your doctor about oxygen, s/he is likely not to give it to you. Lord knows why, but that's how it usually works. You need to insist on oxygen, and/or find a doctor that is competent enough to prescribe it.  For a bunch of stuff that might be helpful, take a look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

  2. 35 minutes ago, EggMan said:

    I’m pretty naive and ignorant to busting methods.  Do you have instructions or a link?  Are any methods “over-the-counter?”

    For basics, click on the blue "New Users..." banner at the top of any page.  Rivea corymbosa seeds (in most places) are "over the counter" in the sense that they are legal to purchase and possess, yet are very effective busting agents.  To discuss any of this further, you'd want to start a thread at one of the more private boards ("Share Your Busting Stories" would work, or "Theory and Implementation").

    • Like 1


    2 hours ago, Rudolph said:

    I looked for benadryl in the UK but it has a different ingredient to your US version. The ingredient (dyphenhydramine) in your version is actually a sleeping pill here! So I decided to just try all the hayfever tablets I could and see which actually worked for me as it was pretty bad this year, I settled on 'piriton' which has chlorphenamine in it. Hopefully it hasn't been to my detriment taking it.

    Might not be any detriment.  But . . .  According to your NHS, "Diphenhydramine is also called by the brand names Histergan, Nytol Original, Nytol One-A-Night and Sleepeaze."  https://www.nhs.uk/medicines/diphenhydramine/#   Looks like maybe Tesco also sells it (??):  https://www.drugs.com/uk/tesco-sleep-aid-25mg-tablets-leaflet.html

    • Like 1

  4. Batch says that the average nmol/L for people who have been highly successful with D3 is 203.5, but the minimum that some successful people have had is around 85 nmol/L.  That's a big range, but you seem to be in the ballpark.  https://clusterbusters.org/forums/topic/1308-d3-regimen/

    You should send Batch a message about the swollen knuckle.  He is very generous about responding.  His handle here is now xxx.  So, click on the envelope icon on the top right side of the page, then put xxx in the "To" line.

    When you say you don't take any other medication for your CH, does that include not having oxygen?

    Many people who have a hard time sourcing MM use rivea corymbosa (RC) seeds.  I think I might have read that they are now unlawful in the UK, but I feel like people were still finding ways of getting them. 

  5. I think everything is well covered here.  As I understand it, Batch's recommendation from 2017 is different from what he recommended in the 2011 post linked to by Siegfried. The 2017 one (which seems like it would seriously save O2) is here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/

    Here's what I understand him to be saying.  (1) For 30 seconds, hyperventilate using room air.  That's ten three-second deep inhale/full exhale events, deeply inhaling and forcibly exhaling during three seconds each time. He says, "On the tenth exhalation, hold the squeeze/crunch until your breath makes a wheezing sound for at least 3 seconds... or until you stop wheezing." (2) Then inhale a big lungful of O2 and hold it for 30 seconds, exhaling with a crunch.  (3) Then do another 30 seconds of hyperventilating with room air, followed by another inhale of O2 that is held for 30 seconds and exhaled with a crunch.  Although he's describing this in relationship to the "red neck bag," I assume there's no reason to think he wouldn't recommend it with an O2 tank and mask. You'd want your lpm setting to correlate with the one minute between inhales of O2, which I would think would mean that you could use a lower lpm setting. 

    You should read fully what he says here and at the other post. I just found it a little difficult to figure out the basics, which is why I summarized them here. He says in the 2011 post that you should stand up while doing this, leaning against a wall. Doesn't say that here, so I don't know whether he still thinks it important or no longer does.  

    • Like 1

  6. 1 hour ago, kat_92 said:

    Also I met with my neurologist today and he gave me 2 samples of emgality. I think I will steer clear of them for now. I have not read promising reviews from cluster heads.

    kat_', you might be making a wise and perfectly good decision about this. But do keep in mind that here and at other CH sites, people are there because things haven't worked for them. A few people have showed up here to say that Emgality, Aimovig, or some other medication of that type has helped them, but for the most part, people who find relief from something are not likely to be here, so the comments are skewed toward the negative, which might not represent the whole picture.  

    • Like 2

  7. I guess it's late, but any chance of getting a prednisone taper for your trip?  For most people it will stop attacks at least part of the time while you're on it.  Seems like that would be safer than driving while aborting.  It will also give the D3 more time to ramp up.  It can take a while, weeks or even months, for D3 to get up to therapeutic levels. 

    You seem like a wise and knowledgeable person, so the rest here is just in case . . .  (and I might not have read carefully enough, so forgive me where I'm wrong)

    Batch has talked about not driving while taking those Benadryl doses. Maybe you're not significantly affected by them.  If you decide not to take them while actually on the road, considering going with 50mg at night.

    You don't mention energy drinks/energy shots/coffee as you start on the O2.  Maybe you are using them, or maybe you've had some kind of issue with them.

    I think you are surely aware that higher flow rates can be helpful for aborting. Even with your good O2 results in the past, you never know with CH.  As you know, the issue is to be able to take full deep breaths and have the bag be full when you're ready for the next one.

    You can send a PM to Batch, and he'll almost certainly reply promptly.  His username here isn't Batch anymore, it's xxx.  Go to the envelope icon at the top of the page and type xxx into the "To" line.  Don't tell him I sent you (inside joke).

    • Like 3

  8. Phantom, just a note that if there's a topic you're wondering about, you can search for it using the search bar at the top right of each page.  I'm not saying that you shouldn't ask questions, but sometimes you can get a lot from a search, too. 

  9. Flunarizine can't be prescribed in the US (or Japan) because it seems to create "movement disorders" related to Parkinson's disease.  https://www.nature.com/articles/s41598-018-37901-z

    There was a time when it was also banned or limited in the UK -- not sure whether that's still true.  It does seem to be effective as a migraine treatment, but maybe not more effective than other calcium channel blockers with less risky side effects.  

  10. On 6/25/2020 at 12:07 PM, dehabel said:

    Batch told me to take Vitamin C with the D3 regimen. 

    For treating your CH or as a defense (in his view) against coronavirus?  He was big on the latter, so just checking.

  11. Acupuncture is almost always ineffective.  I think a few people have benefited from it.

    WHY do neurologists keep finding reasons not to prescribe O2.  It might be difficult to get it approved by insurance, but with most private insurance companies that battle can be won, and sometimes there isn't even a battle. Medicare and Medicaid won't cover oxygen.  Also, having a prescription allows you to pay the O2 provider out of pocket if that's a necessary way to go. 

    3 hours ago, Phantom99 said:

    Is it possible to buy it without doctor’s prescription? 

    If you read the post I linked you to, you'll see the answer to this question (which is yes, by using welding oxygen).

    3 hours ago, Phantom99 said:

    I will try high dosage of D3. 

    Be sure you do the whole regimen, which is more than just high doses of D3.

    3 hours ago, Phantom99 said:

    Surprisingly what also helped me in past is breathing cold air just before headache gets strong. It could help abort it. 

    Yes (see the post I linked you to).  Cold air can help.  If it's cold outside, that's one way. Others inhale from an air conditioner or open freezer.  If that helped you, O2 will be great for you.

    • Like 1

  12. Here's some basic info about treating cluster headaches (it does sound like that's likely to be what you have).  Among other things, there's a link in here to the D3 regimen, which the previous posters recommended (for good reason).  You should start the D3 right away.  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  Check out the "Triggers" link, too.

    I have a slightly different view regarding the Topamax.  Yes, it is not a first-line CH treatment.  So, if you can get a revised set of prescriptions quickly (something like oxygen, a nasal or injected triptan, verapamil, and maybe a course of steroids), those (or something like them) are your best bet.  You will also see in the post I linked you to some strategies for dealing with CH without prescription meds (energy shots or caffeine;  "busting"; Benadryl; standing in very hot water; and some others). But there are some people who take Topamax without severe side effects, and it helps them.  So if you are going to be without the better prescriptions for a while and the non-prescription methods aren't helping enough (D3, for example, can take several weeks to get to effective levels), I would consider taking the Topamax and seeing how it affects you.  If you don't want to continue it, you can stop.

    Incidentally, if you want to look into posts on a topic, you can use the search bar at the top right of the page.  You'll find lots of information that way.

    • Like 2

  13. If 25lpm with a non-rebreather (NRB) mask is sufficient flow for you (sufficient that the bag is always full when you are ready to inhale using a fully effective breathing technique), there's no reason I can think of that your aborts would be faster using a demand valve.  There are small "studies" claiming greater effectiveness for demand valves vs. NRBs, but in those studies the people using the NRBs had flow rates of 15lpm, which might just have been too low for them. (Average abort times for people using the demand valves in one study was 12 minutes. I don't think that means much, since everyone has different results from O2, but 12 minutes isn't super-fast.)

    I also have never seen how a demand valve would save any significant O2. With a non-rebreather mask, the O2 goes into the bag and you inhale it. All the demand valve does is to skip the bag part, so it seems to me that at the end of the abort you have inhaled very close to the same amount of O2, except possibly for some small leakage in an NRB system (or, conversely, getting a deeper inhale somehow from the DV might mean you'd use more O2 with the DV if abort times were the same).  If you got faster aborts with the DV, it clearly would save some O2, but I am not confident that that would happen.

    That said, my daughter loves her demand valve system, in part because the mask is very cushy (not true with all DV systems) and I think maybe because she feels more in control in some way.  She's had it for many years. Her aborts have not been faster with it, as far as I can tell.

    I'm not sure you can buy a DV valve from a supplier without a prescription.  I don't think you can.  The Ebay ones, when they appear, don't require a prescription.

    • Like 2

  14. It's not like we didn't expect this would happen, but it's infuriating and disgusting and disgraceful, and the words I have for your PCP and the practice are a lot stronger than that.  You said in a previous post that the neuro was going to tell the PCP that he (the neuro) recommended high-flow oxygen for you.  That had no effect, either??? 

    3 hours ago, jon019 said:

    the scripts for Imitrex, prednisone and verapamil all indicative that "standard of care" was referenced as you don't just pull those out of thin air if ya don't know CH...

    jon' -- I'm thinking these are standard migraine prescriptions, no???  Just sayin' they probably didn't actually have to put in any real effort, since they've probably prescribed this stuff many times for people with "headaches."  The heartless bastards.  

    Cap', Please consider welding O2. This post is a little chaotic, but it will get you started with understanding the basics.  https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

  15. People often start at about 9mg of melatonin, and then work up as needed/tolerated.  Some people here take amounts in the high 20mgs or even higher.  Melatonin plus Benadryl is a strong dose of sleep-inducing medications, though, so take care if you are doing both. 

    Yes, GET THAT O2, ASAP!!!!!!!  You're putting yourself through a lot right now that you won't need once you have the O2.

    • Like 2

  16. 1 hour ago, My Favourite Headache said:

    It's a shame they don't do a parallel trial with BOL-148.

    I was kind of surprised that this wasn't actually a BOL trial. (For those that don't know, BOL-148 is a whole lot of LSD, many times the recreational dose, that is rendered non-hallucinogenic by the addition of another molecule (brromine).)  I know there were issues with another company's attempts to bring BOL to market for CH, and I know some of those issues were related to licensing rights and fees.  Or something.  Anyway, it could be that there's a "business" side to this choice.

    • Like 1

  17. Your triptan decisions are completely sensible.  I just wanted to be sure you saw the other side.

    Great that you have such a good O2 setup!  Only advice, which you might already be using, is to be sure you get as much air out of your lungs as you can before your first inhale and after subsequent exhales.  Hyperventilation as Batch recommends, or at least a good forceful "crunch."

    I don't think the D3 regimen should be an "if."  Even if it doesn't help you right now, most people find that it's generally good for them, and it will help you with the next cycle.  Two years is far away, though (if your pattern continues), so I can see why you might want to start it later.  Just don't completely let it slide, would be my advice.

    • Like 1

  18. 15 hours ago, BustOrNothing said:

    I have nasal spray Sumatriptan, but from what I read, it tends to extend cycles / cause more headaches, so I have yet to use it. I’d rather succumb to the beast than extend my misery by more than need be.


    4 hours ago, spiny said:

    And I will say Congrats for avoiding the Trex. I am lucky in that I cannot take it, so I never had to deal with coming off of it! It can be really rough to ditch when you are now having more hits and worse hits from taking it. For some it does work very well. For others it works, but which 9 hits do you kill for the month? That is a tough question. 

    Acknowledging spiny's strong knowledge, I'm not sure I agree.  There is probably no question that triptan overuse will have many bad effects, probably including rebounds and maybe including extending cycles.  On the other hand, so much of this is guesswork.  Look at your current cycle--came sooner, has been more severe (so far). If you were using triptans (now or before), you might be inclined to attribute it to that.  My daughter has virtually never used triptans, but her cycles seem to keep getting longer and she has plenty of what seem like rebound attacks. (Many people get wicked rebound attacks from busting, which we call "slapbacks." That's a different situation for many reasons, but not completely un-comparable.)  So I would say that if you're heading for a long one that your O2 + caffeine isn't stopping, you might weigh the amount of misery reduced by the spray (assuming that it works for you) against whatever the probability might be that moderate use of triptans might have undesirable effects.

    Is your O2 setup optimized? Forceful breathing technique; flow rate such that you can use good breathing technique without waiting for the bag to fill; top quality mask (ClusterO2 mask)?

    Yes, get started now on the D3, and consider busting, and be sure you are doing all you can to manage this.  If you haven't seen this post, I'd recommend reading through it: https://clusterbusters.org/forums/forum/6-clusterbuster-files/

    Be aware that there is MSG in a lot of prepared foods, not just your Chinese takeout.  I've had it in a hamburger, a fancy lobster dish, a Philly cheese steak, and pizza, among other things. (I know because MSG almost instantly gives me pancreatitis, which is the second most painful thing to CH in some big studies (still far behind CH in painfulness).)  Check labels.  You can't do much about it when you're eating from a restaurant, but maybe you might check back on days when your attacks are more severe to think about what you ate.

    • Like 3

  19. https://www.biospace.com/article/releases/phase-2-clinical-trial-of-lsd-for-and-quot-suicide-headaches-and-quot-begins-treating-patients/?fbclid=IwAR2i4zGnc86d3Hijjzi4vxCBi87AlgJvc5Naeh0wlcXhQP-bgCKFc_h5YZM

    Phase 2 Clinical Trial of LSD for "Suicide Headaches" Begins Treating Patients

    Published: Jun 08, 2020

    MindMed Is Collaborating on a Phase 2 Clinical Trial of LSD For Cluster Headaches with University Hospital Basel's Liechti Lab

    BASEL, Switzerland, June 8, 2020 /PRNewswire/ -- Mind Medicine (MindMed) Inc. (NEO: MMED OTCQB: MMEDF), is supporting and collaborating on a Phase 2 clinical trial evaluating LSD for the treatment of cluster headaches at University Hospital Basel's Liechti Lab. The Phase 2 trial began recruiting patients in early January and has commenced treating patients with LSD.

    Artistic rendering courtesy of MindMed (PRNewsfoto/Mind Medicine (MindMed) Inc.)

    MindMed is the leading neuro-pharmaceutical company for psychedelic inspired medicines and previously formed an ongoing R&D collaboration with the University Hospital Basel's Liechti Lab, the leading global clinical research laboratory for LSD, to evaluate multiple therapeutic uses of psychedelics and next-gen psychedelic therapies. This new development is part of the collaboration and Dr Matthias Liechti is serving as principal investigator of the clinical trial.

    Cluster headaches, also known as "suicide headaches," due to the severity of the pain caused are often viewed as one of the most profoundly painful conditions known to mankind. The pain occurs on one side of the head or above an eye and can last for weeks or months. Studies have demonstrated increased suicidality associated with patients experiencing cluster headache attacks.

    Non-clinical and anecdotal evidence suggests LSD can abort attacks and decrease the frequency and intensity of the attacks. There is a need for new treatment approaches for cluster headaches as current available medications often mismanage cluster attack periods.

    The Phase 2 trial is investigating the effects of an oral LSD pulse regimen (3 x 100 µg LSD in three weeks) in 30 patients suffering from Cluster Headaches compared with placebo. The study is a Double-blind, randomized, placebo-controlled two-phase cross-over study design.

    MindMed Co-founder & Co-CEO JR Rahn said "As we continue on our mission to discover, develop and deploy psychedelic inspired medicines, we are very encouraged to bring this potential treatment for cluster headaches using LSD out of the shadows and evaluate its efficacy based on clinical research standards with the Liechti Lab."

    MindMed's collaboration will assess if there is clinical evidence for a future commercial drug trial through the FDA pathway at a later date. Treatments for cluster headaches may potentially qualify for an Orphan Drug Designation and be eligible for certain development incentives provided by the FDA for rare diseases.

    Liechti Lab and MindMed intend to learn how they can make the administration of LSD more targeted for cluster headache patients through this Phase 2 trial and future clinical trials. As part of the collaboration with UHB Liechti Lab, MindMed gains exclusive, global use to all data and IP generated in the Phase 2 trial of LSD for cluster headaches.

    • Like 4

  20. Maybe this helps explain where it went -- message from CB on FB this morning (not sure why we're not being asked here):

    Clusterbusters is currently building a new physician finder to help people find knowledgeable healthcare providers.
    The best place to learn about which providers treat our community well is to ask the community. If you have a great doctor or other healthcare provider that is excellent at treating cluster headaches, please complete this survey to help us build this important resource.
    Please fill out the survey multiple times if you would like to recommend more than one provider.
    Thank you for your help,
    • Like 1

  21. 4 hours ago, CaptChaos said:

    The main concern my neuro had with O2 seemed to be storage and safety hazards. I asked about O2 therapy at the end of my last CH episode and he suggested waiting until the next so I wouldn't have full tanks lying around the house unsecured. 

    As long as your tanks are well secured so they don't fall over, the only significant danger would be if your house were to catch on fire (from some other cause).  He was right in the sense that there's some tiny risk associated with having tanks in the house, but he was wrong in the sense that now here you are in cycle and still trying to get O2.

    Splitting the shots from an autoinjector will require you to inject yourself in the conventional way (autoinject is disabled when you take the injector apart).  O2 is going to very significantly reduce the number of times you need to inject. (And other things, such as energy shots, D3, and busting, can further reduce that.)    

    You physician probably (??) subscribes to some service, such as UpToDate, that he can refer to in order to find out what recommended treatments are for various conditions.  If he looks there, he will see oxygen listed as #1 (along with Imitrex) for CH.  But he might hesitate in part because he doesn't know how to write the prescription.  If you can say in some casual way that you know what the language of the prescription should be, that might help.  One version of that language is "Oxygen therapy for cluster headache: 15 minutes at 15 liters per minute with non-rebreather mask."  I think I wrote about this in that other post in the CB Files section. . . some things are spelled out here that a doctor would abbreviate: CH instead of cluster headache, min instead of minutes, lpm instead of liters per minute, nrb instead of non-rebreather mask . . . and if you could get him to make it 25 lpm, or prescribe a demand valve system, that would be cool but probably pushing too far.  Not hard, as mentioned in a few places, to optimize your system--and 15 lpm might actually work fine for you.

    • Like 2