Jump to content

CHfather

Master Members
  • Content Count

    5,666
  • Joined

  • Last visited

  • Days Won

    271

Posts posted by CHfather

  1. 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
  2. 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/

  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. Be sure you read the info on splitting Imitrex injections.  A typical injector for CH is 6mg; most people can stop an attack with 2mg, or at most 3mg.

    If the Verapamil works quickly for you, that's great.  It's pretty standard CH practice (or at least commonly recommended practice) to consider a course of steroids to temporarily stop or ease the pain while Verap gets into the system well enough to do its job.

    I'm glad he's taking that step of letting your doc know about that O2 recommendation. In our considerable experience here, most of those docs are very reluctant to prescribe O2. There is a strong belief that most of them don't even know how to write a prescription for O2.  Fingers crossed that it's all going to work out. 

    I hope you'll still look at that file I linked you to, to consider all your longer-term treatment options (D3, busting, etc.) and some of your shorter-term possibilities (energy shots; Benadryl; etc.)

    • Like 1
  11. Very good advice and observations from the other posters, Cap'.  But who knows whether your primary doc will actually prescribe O2--it would be rare if s/he does, and doesn't just bump you back to the idiot neuro.  As F'T' said, all you need is the prescription.  You need to be ready to be persuasively insistent with the primary, or when you go back to the neuro. Or find someone else. 

    Be aware that you can quickly set up an O2 system using welding O2, as many people do.

    Imitrex ain't great for you, for sure, but he just told you to stop--no more prescriptions?

    So what are you supposed to be on now--Some Verap (which won't take effect for at least a week), any leftover Trex, and some magnesium (might help) and B-2 (might help). 

    This post will give you some info about all these things and some other stuff that might be helpful: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

     

     

     

    • Like 1
  12. You are right, constant pain is not really a symptom of CH, and you are right -- usually the pain is not as mild as you describe it.  Aside from the red eye, it's hard to know why that doctor concluded that you have CH, and even harder to understand how given that diagnosis, his prescription was an opioid, when opioids typically have no effect on CH.  As xBoss said, there is often sweating along with CH, but not necessarily fever. Aside from that, it all makes sense:o.  Here's a list of typical CH symptoms (in addition to the severe pain): "Cluster headache attack is accompanied by at least one of the following autonomic symptoms: drooping eyelid, pupil constriction, redness of the conjunctiva, tearing, runny nose and less commonly, facial blushing, swelling, or sweating, typically appearing on the same side of the head as the pain. Restlessness (for example, pacing or rocking back and forth) may occur. Similar to a migraine, sensitivity to light (photophobia) or noise (phonophobia) may occur during a CH. Nausea is a rare symptom although it has been reported. Secondary effects may include the inability to organize thoughts and plans, physical exhaustion, confusion, agitation, aggressiveness, depression, and anxiety."

      As xBoss also said, since there's no objective test for CH (MRI or that sort of thing), you'll want to monitor your symptoms.  If things persist, you ought to get to a headache center for the greatest likelihood of a competent diagnosis and treatment (you might consider making an appointment now, since the wait to see a doc is often quite long).

     

    • Thanks 1
  13. Cl', there has been a lot of discussion here about the "cluster knot," which sounds like what you are describing.  I believe a few people have had some relief from very forceful massage of that area, so you're not alone in that regard.  I think most people found that even strong massage was not enough to deal with it.  One prominent person with CH (Hipshot, who no longer posts here), got relief at least for a while from Botox injections into the knot and other areas around his upper spine.  If you put the phrase "cluster knot" into the search bar at the top right side of the page, I think you will find at least a few discussions of it.

    • Like 1
  14. As is said here, Dr.J', welcome to the community and sorry you have to be here.  I don't think anyone can really answer your question about what your future cycles might be like, except to say that you will learn to manage them so that they are far less awful than what you are experiencing right now, and it's not impossible that you will find a way to eliminate some or all of those cycles.  I think this post and the links within it will provide you with a pretty good tour of treatment possibilities and options, and some things (like triggers) to be aware of: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/.   I don't remember whether that post mentions Emgality, the most recent pharmaceutical treatment for CH.  Our anecdotal reports here are that it works okay (or well) for some people, but is not very effective for others (we're a limited sample here--people who have found success with Emgality are not really likely to show up here, unless they were already here).  

    Some neurologists are pretty good with CH; most are not. So be as prepared as you can when you have an appointment. In particular, be prepared to insist on oxygen, which is  the #1 lifesaver for people with CH.  The vitamin D3 regimen and busting are also powerful tools.  In that post I linked to, there are several suggestions for things you can do right now to reduce the severity of your attacks.  If it will be a while before you can see a doctor and thereby get access to medical oxygen, you might consider setting up your own oxygen system using welding O2, which is used by many people with CH.

    Finally, note the search bar at the top right of the page.  That will help you look into any topic that interests you.

    • Like 4
  15. 43 minutes ago, dehabel said:

    Thanks!  I took one last nigh while a headache was about to start with my Imitrex and jus took one na hour or so ago.  How will I know if it works?  Does it make he spell go away andI can be normal?  Please tell me yes...

    No.  Or at least probably not.  For Batch (username now xxx), I think he found that the full D3 regimen had pretty much eliminated his CH attacks, and when they came back he found that Benadryl eliminated them again (that's how I remember it). So in the right circumstances the answer might be "yes," but I don't think you have reached that state yet (and, frankly, I don't think most people ever do).   For now, I would say you will know if it works if your attacks are less severe or maybe less frequent, or both.

    It sounds like you don't have oxygen.  If I'm right about that, you really want getting O2 to be your main priority.  You might want to read this: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

     

    • Like 1
  16. See reply to your other post.  (In general, if there's something you want to learn more about, you can type it into the search bar at the top right of the page. No problem with asking--just telling you in case it's helpful.)

    For a general overview of CH treatment stuff, you might take a look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

  17. Standard dosage.  25mg (one adult tablet) 3 times a day, and maybe 50mg at night.  As tolerated. If it's too much for you, you can use children's size or liquid to measure your own.  It helps most if it's allergies that are flaring you up (can be allergies that you're not really aware of).

  18. That's really tough, Taylor'.  I'm sorry.   I am hoping that Batch, who developed the D3 regimen, will see your post and respond.  I am going to send you his email address by a private message, so you can reach him in that way.

    This is a video about O2 use. It will give you the key information, but I don't know how much it will help you, even if the guy might look a little like Spongebob (????).  https://www.youtube.com/watch?v=PtFHRIQN17s&t=273s

    There was a person here a few years old with an autistic child with CH ("an odd form of autism," the person said).  This is a thread from then https://clusterbusters.org/forums/topic/4506-cluster-headaches-or-migraines-having-difficulty-getting-a-diagnosis/?tab=comments#comment-48715.  You might try reaching that person, "tonic," by sending a private message.  To do that, click on the envelope icon on any page (top right) and type tonic into the "To" space.

    I think D3 is probably your best bet. My sense is that 3mg of sumatriptan (Imitrex) is probably more than needed. Most adults with CH can abort an attack with 2mg, even though the Imitrex autoinjector is 6mg. (Your doctor probably doesn't know this about the 2mg usually being sufficient; it's "citizen science," not formal medical research (as far as I know).)  3mg is likely to be a pretty big jolt.  (There is a "similar type of headache" (a hemicrania) that is sometimes not responsive to triptans, so the test makes some sense.)  I'm a little surprised that the doc isn't trying verapamil first before those other two meds, because in my mind its effects are less severe, but maybe there's a reason.

     

     

  19. Tony2,

    Please see the post right above yours for some verapamil-related info.  Also, note that verapamil takes some time to get into your system, so you probably won't experience results for a while. Sometimes doctors prescribe a course of steroids to temporarily take away the pain while the verapamil is building up its effect.

    You probably want oxygen; you probably want to start the D3 regimen; probably you want to be taking Benadryl right now; you might want to consider busting; you might want an injectable sumatriptan . . . . This post addresses those things and some more: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  

    • Like 1
  20. Others are likely to have suggestions specifically regarding the dread.  But you can reduce the dread by being sure that you are using all the best weapons, of which your spray is just one, and maybe not even the best in that category. You want oxygen; you want to start the D3 regimen; probably you want to be taking Benadryl right now; you want to consider busting; you might want an injectable sumatriptan . . . . This post addresses those things and some more, including (far down on the page) some advice about shadows (ginger, mostly): https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  

  21. 1 hour ago, gary6454 said:

    Is the slow release Verapamil better?

    No! It is considered to be much less effective.

    240mg/day is unlikely to do much of anything for you. I am assuming your doctor is starting low and monitoring side effects before adding more, which is good medical practice.

    Are you doing the D3 regimen?  If so, be sure to take your verap about 8 hours apart from the calcium in the regimen.   

×
×
  • Create New...