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CHfather

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Posts posted by CHfather


  1. 59 minutes ago, AJOVY said:

    One thing I want to mention about Ajovy and is that is IS approved for patients with cluster migraines, both chronic and episodic.

    I know you're trying to be helpful (and promote a product, which is generally against the rules of the board but I suppose could be waived in this case(?)), but Ajovy is not, to the best of my knowledge and with reference to the Ajovy website, approved for cluster headache -- and there's really no such thing as "cluster migraine." 

    So unless you can clarify, this might be creating false expectations among people with cluster headache, which is not a form of migraine. I'd be happy to be shown that I'm wrong, since I think this treatment is important.


  2. On ‎9‎/‎20‎/‎2018 at 6:02 PM, CHChris said:

    Racer1_NC taught me how to use oxygen, which I was able to put into practice the next day.  I had never properly used oxygen before,

    CHChris, can you say anything about what you learned from Racer's presentation that helped so much?  He's great, and always full of great advice.

    On ‎9‎/‎20‎/‎2018 at 6:02 PM, CHChris said:

    find a new neuro that will actually prescribe oxygen, because it is the best abortive treatment I have found.

    I assume you have heard that many people use welding O2 as the basis for their systems.  That's an option worth exploring if you can't get a prescription for medical O2.


  3. D3 regimen and busting (read the numbered files in the ClusterBuster Files section to learn more about busting) are the only ways I know to "get them go away" (end your cycle) without a visit to a neuro for a prescription (such as verapamil and/or prednisone, which might or might not work to end your cycle).  Of course, you can get individual attacks to go away with oxygen, sumatriptan, and other things that you might get from a neuro.  And I suppose you might step up from straight coffee to energy shots (such as 5-Hour Energy) to maybe get quicker aborts.


  4. Yann, this is of course very painful to read for those of us who understand what you are going through.

    It's not clear to me why you're only planning to do the D3 regimen "starting next winter." It's something you should do right now, I think.

    Have you looked into the GammaCore device at all -- a portable method for aborting attacks. http://gammacore.co.uk/  Mixed reviews, apparently not as effective for people with chronic CH, and quite expensive in the US (don't know about Europe), but I'd think it could be worth trying.

    Also, the new preventive medicine erenumab (Aimovig) is approved in the EU, at least for migraine, and I think it can be expected to be helpful for CH, if you can get a doctor to prescribe it. As I understand it right now, you have to go to a doctor's office to get an injection every two months -- but I could be wrong about that.

    CBD oil as an abortive and possible preventive?  Lots of good reviews here.  You can look it up by typing CBD into the search bar at the top right of the page. 

    Do you know about splitting triptan injections so you use a lot less each time, and therefore have a lot less side effects?  https://clusterbusters.org/forums/topic/2446-extending-imitrex/

    As you say, many people have found relief from busting.  I can see how it doesn't really fit your schedule right now, but of course it's something you should consider.  You would not be the first person to come here thinking it would be better to not be alive, and to find life a lot better.

     


  5. There's a fairly high likelihood that your primary will be shocked by the amount of D3, and even try to talk you out of it.  S/he will be wrong about that.  You don't need to have the blood workup before starting the D3 at a basic level -- it is virtually guaranteed that your D is low, particularly by the standards required to treat CH, and starting at 10 or 20kIU/day isn't going to do you any harm in any event.  Is the triptan injectable (could be pills (worthless) or nasal spray (iffy))?


  6. Injectable triptans. Split them 3/1, or at least 2/1:  https://clusterbusters.org/forums/topic/2446-extending-imitrex/

    D3. Start ASAP.  http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

    Energy shots. Drink one at first sign of an attack.  5-Hour Energy is a place to start (easy to chug, lots of caffeine).

    Check your triggers: https://clusterbusters.org/forums/topic/4568-triggers/

    Benadryl.  A lot of folks find that their CH ramps up in high pollen seasons, or from other allergies.  "Batch" (one of the great experts) recommends standard dosing of 25mg 3/day and 50mg at night.  That'll make you drowsy, but it might help your CH.

    Mushrooms and other substances: Read the numbered files in the ClusterBuster Files section

    Big compendium: Read Bob's Big Pocket Guide in the ClusterBuster Files section

    Your currents meds.  What, specifically, are you taking, and how much?

    Oxygen.  You could set up a system using welding O2 in a few days.  ~15-20% of people with CH use it.  You can't imagine the difference that O2 will make for you.

     


  7. According to this long-term evaluation of ten patients, effective for chronic CH.

    CONCLUSION: High volume suboccipital nerve blocks from this open label study appears to be effective in the preventive treatment of medicinal refractory CCH and shows consistent response over long-term use with high rates of pain freedom.

    For some reason, the system won't let me paste the whole summary.  Here's a link to it: https://www.docguide.com/high-volume-anesthetic-suboccipital-nerve-blocks-treatment-refractory-chronic-cluster-headache-long-?tsid=5


  8. Mum',  I think you're going to find that part of that frustrating "everyone is different" thing about CH is that there are many ways in which cycles develop and end, and they don't always stay the same for individuals from one cycle to the next.  I would guess that the most common pattern is ramping up pretty bad in the days before they fade away. For sure, it would not be unusual for the D3 to now be having an effect on his attacks.

    I have questions, one of which is more appropriate for a closed board such as "Share Your Busting Stories."  Does he still not have access to oxygen when he gets his attacks?  Is he doing anything to abort his attacks?  Is he doing anything besides D3 as a preventive? And (the closed board one) is he busting now?  All of those things are going to affect the pattern of his attacks, and maybe the duration of his cycle.


  9. You might know that CH was once called (and still is, I guess) "histamine headache."  You don't need this now, but many people find that quickly drinking an energy shot such as 5-Hour-Energy at the start of an attack can help quite a bit.  There's a lot of caffeine in those things (= couple of cups of coffee), and many believe  that other ingredients in energy shots (taurine, maybe niacin, maybe B vitamins) also help.


  10. I'm not sure what the info I referred you to on the D3 regimen says about allergies, but the developer of the D3 regimen recommends Benadryl 4/day (25 mg three times and 50 mg at night), because he has noticed a strong correlation between high-pollen seasons (ands allergies in general) and CH.

    CH is a very harsh thing to have, and your fears about another cycle are justified. However, if you have CH, you had none of the treatments that make it manageable for most people.  D3, a preventive (usually verapamil), an abortive (oxygen and injectable sumatriptan), awareness of triggers, use of melatonin, caffeine in some form, and some other tricks -- those all help, and you had none of them.  A course of corticosteroids can sometimes help, too.  And the new medication, erenumab (Aimovig), is showing a lot of promise as an effective preventive. None of this will fully alleviate your fear (there have been people here with chronic CH who have said they preferred it because they didn't live in dread any longer about when their next cycle might come), but also your fear shouldn't be disproportionate to the treatment possibilities. And I haven't mentioned "busting," which is the reason this site exists and which has made a huge difference for many.  Read about busting in the numbered files in the ClusterBuster Files section, and also look through that section for other potentially helpful information ("Bob's Big Pocket Guide" is very thorough). 


  11. 39 minutes ago, simplescapes said:

    I had the attacks mainly around 3ish in afternoon never waking me at night. They are intense right sided head pain behind right eyeball, feels like someone cracked the base of my skull with a baseball bat, upper teeth pain, sweaty face, sometimes like a vice on head very very hungry afterwards like I haven’t eaten in days. Why it’s confusing is Er dr, eye dr and PA said maybe CH, neuro says vascular migraine and pcp says exertion headache and “we treat all migraines really with the same meds sooooo” knowing which type isn’t really important and maybe you had a virus???? I asked to try oxygen and he said would be too cumbersome when in the car etc..... during that period there was no driving for me, I don’t think he even slightly understood, I wasn’t going anywhere I was at home and so I left his office thinking if this does return it will be time to schedule with a headache expert. 

    Sure sounds like CH. There's nor real point in me talking about how stupid the medical advice you have received is -- you already know that.  Nobody talks about "vascular migraine" anymore -- CH is just as "vascular" as migraine; it seems unlikely that you overexert yourself at roughly 3:00 every day . . . .  and some day maybe we will know why so many doctors are so incredibly, tragically (for the patients) lost when it comes to O2.  I would only urge you not to take an "if it does return" stance and assume that it will.  Since headache centers often have long wait times for appointments, I would seriously consider setting up an appointment now.  And it is probably very advisable to start the D3 regimen now:  http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708


  12.  

    9 hours ago, simplescapes said:

    1. Does anyone get aura before CH?

    2. Does anyone have excruciating calf pain during CH?

    3. So far Sept 17- APRIL 18 I was affected by _______???? Haven’t had any headache since but have started feeling fatigue and a little dizzy- does anyone have warning signs to when remission period ends?

    simple', I really got nothing valuable for you, but . . . 

    Regarding #1, here is a passage from a fairly large study of CH patients in 2011.  It answers the "does anyone" part of your question, but it's pretty fuzzy overall:

    A total of 21% of survey responders noted an aura history before a

    cluster headache attack. Survey responders were
    asked if they ever experienced any symptoms including
    aura prior to cluster headache onset. Auras could
    be visual, sensory, language/speech, and brainstem
    (dizziness and vertigo). Aura duration was less
    than 5 minutes in 25%, 5-10 minutes in 30%,
    11-15 minutes in 17%, 16-20 minutes in 10%,
    21-25 minutes in 10%, and 25 minutes or more in 8%
    of patients. Almost all auras with cluster headache
    lasted less than 25 minutes (92%), and 55% of
    patients with cluster headache had auras that lasted
    10 minutes or less.

    #2.  I haven't heard of this, and I'd say it's surely not common, but maybe someone has it as a symptom.

    #3.  Yes, some people have warning signs that their cycles are beginning, but again -- from what I have read -- fatigue and dizziness aren't common onset signals.

    #4. There are a lot of CH-like symptoms in there (beer as a trigger, rocking and moaning, thinking it's a teeth issue), but others not so familiar to me.  You don't say much that relates to the basic diagnostic things: timing of attacks, length of attacks, attacks/day, location(s) of pain, physical manifestations in eyes/nose. I assume you have looked up the symptoms or indicators and know what they are.  Triptans in pill form virtually never work for CH; nasal spray sometimes works; injections almost always work (although there's nothing diagnostically useful about that since triptan injections work for a lot of types of "headaches").  You don't mention oxygen, which when set up and used effectively aborts attacks for a very large percentage of people with CH.  That might be a next step with both therapeutic and diagnostic potential, since O2 is generally not effective for other headache types.


  13. Thank you, cheeky'.

    It could be the dental extraction was a cause . . . We thought that about my daughter's situation, in which she began having CH attacks after a difficult extraction.*  However, it's just as likely that attacks after dental work are caused by the anesthetic that is typically used, xylocaine, which contains epinephrine.  I realize that the structural effects of an extraction seem more likely to be lasting than the system effects of an anesthetic.  So, like I say, you could well be right about that. 

    *She had had bad "headaches" before, but they hadn't reached CH-terrible levels.  Hadn't even seen a doctor about them.  After that, they were bad.

    Glad you have it (relatively) under control.  If your sumatriptan is injectable, you might consider this advice for splitting injections so you use less but still get fully effective aborts: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

    And you might also consider the vitamin D3 regimen that has helped many: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

     


  14. Mum', I'm a little confused here. The comments from FunTimes and HazBaz relate to treating "shadows," which might be what you are describing. But slapbacks (in your subject line) are forms of CH attacks (which you say these might not be).  The advice you have related to treating shadows is right on, but those things won't help with an actual slapback.  If your question is whether it's okay with regard to busting to take Tylenol or Advil, the answer is that they won't interfere with busting.  I know this is late -- I hope he's feeling better!!!!


  15.  

    gail', the box below the most recent post should say "Reply to this topic" in it. Just click in the box and you will be replying.

    Click on the link at the end of this sentence to get the ClusterO2 Kit: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

    The Theory and Implementation board is accessed from the Home page. You will see the word "Home" at the top left of every page, just under the menu items that begin with Forums.  You can only see and access the Theory and Implementation board if you are signed in as a member, because that board is only open to members.

    Notice also that each time you create a post, you will see at the bottom of the page something that says "Notify me of replies." Since you are posting in many places, that might be helpful for you.  Your best bet is to start a new topic at either Share Your Busting Stories or Theory and Implementation (I think FunTimes mentioned how to do this) and then your primary conversations can be kept in the same "thread" and will be easier for you to find.


  16. I'd be a little surprised if anyone here has an answer to your DALT shelf life question.  Not a lot of DALT users here.  I'd suggest that you might get a quicker answer by sending a private message to dlnmerced, who is a member here but hasn't posted much lately.  If you click on the envelope icon, and start typing dln in the "To" box, I think it will autofill with the rest.

    Alternatively, the Facebook group where DALT was most strongly popularized will probably have a fast and reliable answer for you. (It's a closed group, so if you're not a member you'll have to ask and then wait to be accepted. I think that's a fairly quick process.)  The group is called "Cluster headaches (trigeminal autonomic cephalagia)"

    Hopefully I'm wrong and someone here can answer you.


  17. We've had some discussions here in the past few days about what size industrial O2 tanks to get.  You'll probably want at least two -- the largest one you can handle for home use, and a smaller one, maybe 60 cu ft or even 40 cu ft, for portability.  spiny recommends 90 cu ft for the home one and 60 for the portable one, and Dallas Denny has had his home tank much bigger than that.  As I say, the bigger you can handle the better, since it'll keep you from having to lug it back to get it refilled. Same is true for the portable one, but in a lower range.  Ideally, you'd want a regulator and a mask for each.  You can roughly figure out how long a tank will last by converting cu ft to liters and dividing by a number, which I'll call 20 here, which would be the flow rate you'd be using (of course, industrial O2 regulators don't have flow rate settings as medical regulators do, so you'd just be guessing, but an effective flow rate (the rate that makes sure the bag is full each time you're ready to inhale) is typically between 15 and 25.  YMMV, of course.)  So, a 60 cu ft tank is about 1700 liters (you can get this info by typing into google [60 cu ft = liters]). Divided by 20 liters per minute, that means you'd get roughly 85 minutes of use from it.  (I will note here again that I and some others have observed that O2 treatment for CH seems to become less effective as the tank pressure (the amount left in the tank) goes down; but I'm not sure that everyone would agree with that. The last third of the tank is almost useless for my daughter (she's the one who has CH).)

    Note also that standard industrial regulators do not have the barbed fitting that a mask is most easily attached to.  You can kluge that, or you can buy a plastic adapter for a few bucks at many hardware stores or online, or you look for a regulator that comes with an adapter with the barbed fitting.  A regulator you buy at an industrial supply store will probably be considerably more expensive than one you buy online, and it might not have that barbed thingie.


  18. 1 hour ago, 3800sc said:

    I have been looking into oxygen, knowing I probably will never get a prescription for it, I have been looking for bottles on my own, actually found some on Craigslist, 4 bottles for $100

    Good for you for working on this, but I suspect this particular thing that you have posted won't work. Any chance you can post a link to the ad?

    I could be wrong about all this, and someone more knowledgeable will correct me.

    If they're medical bottles/cylinders, you still can't get them filled without a prescription.  If they're welding ones, you might or might not be able to get them filled, depending on the policies of your local welding O2 supplier(s). They might be SCUBA "oxygen" tanks, which I'm pretty certain won't work at all, for a variety of reasons.  I can only guess that they're empty and quite small, at that price.

    You'll need both a regulator and a mask.  The best mask is here: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit    A standard non-rebreather mask, which will be around $5 at amazon, will work, but not as well.  When you get to buying a regulator, we can recommend some.


  19. rowdy',

    This is the only part of your question that I know anything about.  If you have the regulator for larger tanks (a CGA 540 regulator), it will fit on any industrial (welding) oxygen tank, and of course your mask will still connect fine to your regulator.  Smaller medical tanks use a regulator (CGA 870) that won't fit on any industrial tank. I don't know how to insert images here, so this is a link to what a CGA 540 medical oxygen regulator looks like: https://www.amazon.com/CGA-540-Style-Oxygen-Regulator/dp/B006GERK0M in contrast to the CGA 870: https://www.amazon.com/Medline-HCS8715M-Oxygen-Regulator-Connection/dp/B00KG8DNKU/ref=sr_1_fkmr0_3?s=industrial&ie=UTF8&qid=1535422718&sr=1-3-fkmr0&keywords=cga+860+oxygen+regulator


  20. 7 hours ago, spiny said:

    Not to rebut CHF's excellent post, but I would suggest one 60 and one 90. The 60 is not required to be capped when traveling, so you can have your mask attached to it on the road. It is not an issue for me to lift and load. BTW - I am old with a torn rotator cuff, so that says something. A 90 will last longer of course and I have found the 60 very hard to come by. So, I use one of each and try to keep at least one completely full at all times. Yes, I can haul the 90 too, but it is heavy. Of course the shortage of 60's may be just the people I have to deal with!

    No problem and no real disagreement, spiny.  But people getting welding O2 for the first time don't really have a chance to see how heavy/unwieldy it is for them before they buy tanks, so I think it might be a good idea to go on the lighter side at first.  They can always be swapped for a bigger tank next time.  I also think a lot depends on how you're going to store and transport them.  If they're practically always on a cart, weight is only an issue when putting them into a vehicle and taking them out when getting new ones.  I would not much like to get a 90 out of the trunk of a car by myself. "We" (since it's my daughter who has CH, as you know but maybe not everyone reading this knows) now have a pretty good collection of 60s and 40s that do the job.

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