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CHfather

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Posts posted by CHfather

  1. I'm sorry . . . I don't have anything more to suggest.  If the liometacen/indomethacin is actually working, then it's possible (I imagine) that you might have a condition that has symptoms like cluster headache but is not the same, called a hemicrania.  There are several types of that condition, most commonly hemicrania continua and paroxysmal hemicrania, and they can be either episodic or chronic.  https://my.clevelandclinic.org/health/diseases/21538-hemicrania-continua#:~:text=Hemicrania continua and paroxysmal hemicrania both affect one side of,hemicrania causes repeated%2C sudden headaches.  People with hemicranias generally do not get results from triptans, as it seems you don't, and they also generally do not get results from oxygen, which seems like it might also be true for you.  They do get results from indomethacin, but it is administered in the form of a pill every day (multiple times a day) as a way to prevent attacks, and not, as you are using it, as an injection to stop an attack.  Maybe you have also tried this.  Usually the daily pills are taken with something to protect the stomach lining and digestive system. (I see you were here some years ago asking about busting. If that also didn't work for you, it would be a further indicator that you might have a hemicrania, since generally busting has little effect on hemicranias.)  We can hope that when your O2 system is sorted out, you will start getting results from that and things will be much better.  But, if you haven't done it already, I would look into the possibility of a hemicrania treated with indomethacin.  Like I say, I'm very sorry for what you are experiencing, and very sorry that I haven't been able to be more helpful to you.

  2. did you prescribe this liometacen to yourself, or did your doctor prescribe it?  it is basically a drug we know of here, called indomethacin.  it is very unlikely to help with your CH, and it is probably causing pain in your gut, too.  could tell you a long story about how we know this, but take my word for it.  i have no idea what the story is in egypt, but of course there are many countries where you can get drugs without a prescription that can only be obtained with a prescription in some other countries.  i am not prescribing anything here, only telling you what we know about what works and what doesn't.  the medicine that will stop CH attacks is injectable sumatriptan (called Imitrex in the US and Imigran in some other countries), or sometimes a nasal spray of zolmitriptan (Zomig).  you have to be careful with these, but they will stop attacks.  "painkillers" won't stop attacks, no matter how strong they are.  Imitrex and Zomig are standard prescriptions for CH.  if a doctor is prescribing for you, he or she should know that.  the pill form of sumatriptan, or zolmitriptan, or any triptan, is not very helpful, because it takes too long to work, but it might help you, particularly if your attacks occur at regular times so you can take a pill in advance.

    the standard medicine to prevent CH attacks is verapamil.  most people here strongly prefer the vitamin d3 regimen, but you don't seem sold on that.  verapamil should be prescribed by a doctor and used at first under a doctor's supervision to be sure it doesn't damage your heart. many people get some relief from taking a steroid, such as prednisone. it is taken in a "taper," with a high dose at first and then lower doses over a period of roughly a couple of weeks.  again, a doctor should know about this, and it doesn't usually end a CH cycle, but gives a few days of relief. 

    • Like 1
  3. a red bull has about the same caffeine as an 8-ounce cup of coffee.  some people think that other ingredients in red bull make it more effective than coffee alone.  it could be that if you get the oxygen working properly you can get a satisfactory end to an attack without caffeine.

    if you use the bag method that i linked you to, flow rate is not an issue.  but 95% O2 is generally not as good as 100% from a tank. 

    • Like 2
  4. [Note: I was writing this as Bejeeber posted his reply.]

    Many people use Red Bull.  The differences between Red Bull and the smaller energy shots like 5-Hour Energy are (1) It's harder to quickly drink down an 8 ounce Red Bull than a 2-ounce 5-Hour Energy, and (2) even though it is smaller, the 5-Hour Energy actually has twice as much caffeine as the Red Bull.  But as I say, many people do fine with the Red Bull.  Many people like whatever drink they use to be very cold.  As I mentioned, you could also try brewing some strong coffee and keeping it on hand for when an attack comes.

    A concentrator is not a good idea.  It does not make pure oxygen like what you get from a tank, and usually the flow rate is very low.

    In the previous posts in this thread, there is discussion about the kind of mask you have.  It is kind of shocking to me that you can't get a non-rebreather mask.  It is important when using oxygen that you get as much "old air" out of your lungs as possible, by deeply exhaling, and then fill your lungs with oxygen by deeply inhaling.  In a system with a bag, the oxygen is held in the bag until the next time you inhale. With the mask you have, the O2 keeps flowing.  That just wastes a lot of oxygen, and I think it might encourage a kind of "normal" breathing instead of the deep inhales and exhales you need to stop an attack.  Maybe you could make your own bag, as described here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/.  It's not the same as a nonrebreather mask, but it would serve the same purpose for you.  (Some people think it's not a good idea to keep a bag full of O2 sitting around in your home.) 

    • Like 2
  5. 9 hours ago, chh said:

    cyclinder + mask + regulator up to 250 o2 pressure or 3500 lb/in2 + water cup

    No nonrebreather mask and no caffeine

    what I am missing ?

    image.jpeg.1c39c7ada9fac58960b120e8134bee59.jpeg

    @Racer1_NC  Help, please!

    9 hours ago, chh said:

    No nonrebreather mask and no caffeine

    what I am missing ?

    I asked Racer for help because I don't recognize this system.  Most people find that some form of caffeine ingested just as you are starting the O2 will significantly speed up the abort.  Often, that's in the form of an "energy shot," such as 5-Hour Energy, but for some it can be just a strong cup of coffee, and some favor other energy beverages, such as V-8 Energy.  I can't tell from this what your mask is, but a nonrebreather is the best way to get O2 for CH (or a demand valve, or the mask that is made for people with CH (the ClusterO2 Kit), but those all work on the same principle, that you get pure O2 when you're ready to inhale).  

    • Like 2
  6. 2 hours ago, chh said:

    I found that on my extreme attacks O2 does not work , it make the pain happen faster

    how are you using o2?  what is your system (do you have tanks, do you have a regulator that goes up to at least 25 lpm, do you have a nonrebreather mask (a mask with a bag attached to it)?  do you take some kind of caffeine when you start?

  7. i think it works okay for some people (based on reports here), and for some it seems to have some effect as a preventive.   not as good as oxygen for stopping an attack; not as good as many things as a preventive. 

    not sure what your question is about the recharge.  it won't work unless you recharge it.  I had understood it was every month, and it was something like $600/month.  Maybe that has all changed.

  8. Jackie, the primary thing you want from a doctor, if you have CH, is a prescription for oxygen.  This post will give you a lot of info about CH treatments: https://clusterbusters.org/forums/forum/6-clusterbuster-files/  

    It's not clear to me that you have CH, which doesn't really cause severe pain 24/7.  If you are having severe 24/7 pain with periods during the day when the pain is worse, and if you have tried standard CH medications without relief (particularly if you have tried oxygen and also tried injectable sumatriptan, or Imitrex), it seems more likely to me that you might have a condition that is very similar to CH but treated differently, called hemicrania continua (https://www.ninds.nih.gov/health-information/disorders/hemicrania-continua#:~:text=about related topics-,What is hemicrania continua%3F,both sides of the head.)

    • Like 3
  9. 2 hours ago, jon019 said:

    teacher-burnout.jpg

    For full accuracy: remove the hair, add about 50 years and 50 (or 60) pounds, insert computer, and replace vest and tie with ripped pajama top. 
    But back in the day, I did get to do some fun things.

    • Haha 5
  10. kat', I suppose you have checked this out thoroughly, but from looking on google, it seems like there are lots of welding O2 rental places in Puerto Rico, and also maybe a place where you could rent a concentrator, which might be better than nothing (https://www.rentittoday.com/medical-equipment-rentals/san-juan-puerto-rico-portable-oxygen-concentrator-rental-for-cruise-ship-22966).  Maybe it's more of a hassle than you want to go through on vacation, or even too much of an expense.  But maybe worth bringing your mask and regulator just in case.  

    Another thought is that you might try some of the FaceBook CH groups and just put out a request for whether there's anyone who lives in PR who might be willing to loan/rent you a tank, or can recommend a place to get one.

    (I don't expect much to come from this, but I sent a message to the Puerto Rico Tourism Company, asking about getting O2.  Many years ago, I actually worked for them, doing training at resort hotels on the island.)

    Story about a PR neurologist: https://www.latinoleadersmagazine.com/marchapril2022/2022/5/11/i-can-feel-your-pain-dr-franchesca-fiorito-headache-center-in-puerto-rico 

    • Like 5
  11. Lots of people do it this way -- no prescription required: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

    Your PCP is probably wrong . . . For a long time, Medicaid didn't cover O2 for cluster headaches, but now it does, or at least it can.  This is a little complicated -- regional Medicare/Medicaid centers are allowed to determine whether or not O2 is covered for CH in their regions.  And of course, you'd need a prescription.  Welding O2, as discussed in that link, works fine, with no prescription needed.

    Since you are new to CH (we don't actually think there is such a thing as "cluster migraines," except maybe for a very, very small percentage of people), you might look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

     

    • Like 4
  12. 1 hour ago, Seattle cluster said:

    Not sure I understand why the bag would prevent o2 loss compared to my old mask which I believe had no holes so I was essentially just breathing straight 02

     

    2 hours ago, Seattle cluster said:

    my old mask which I believe had no holes

    I think if we are understanding your old setup correctly, you have what is called a "simple face mask" -- O2 was continuously flowing into the mask (not being held in a reservoir bag as the new NRB mask does).  If that's right, then once you had inhaled with the old setup, O2 was still flowing, but not doing you any good because you were either holding o2 in your lungs or in the process of exhaling.  With the bag, the only time you are actually using O2 is when you are inhaling.

    But I am confused, because a simple mask has holes in it (like the ones on your NRB, but on both sides) because that's where the exhale goes out.    Could it be that you had a demand valve system, in which the only time O2 flows is when you "demand" it -- when you start inhaling (or perhaps press a button)?  That would explain a lot (no bag; high effectiveness).

    If it is a simple mask in your old system, you aren't getting nearly as much pure O2 with that as you would with an NRB, because of the holes in the sides and also because you are rebreathing some of the CO2 that you have exhaled.

    • Like 2
  13. Some O2 thoughts.  (1) Your mask probably has a set of small open holes on one side.  Block those so that no room air gets in when you inhale.  (2) Some people find that when a tank is relatively low in O2 (maybe 1/3 full or thereabouts) O2 is less effective.  (3) If the bag is not full when you are ready to take your next deep inhale, your flow rate is too low. 

    As far as changes in frequency/timing/severity of attacks, many people do experience that. 

    • Like 4
  14. Well, there are triggers, in the strictest sense of that word.  For many, epinephrine (anesthetic used in dental work and other situations) will create an attack, in or out of cycle.  Nitroglycerine is used in experiments to trigger attacks in people who are not in cycle.  For some/many, alcohol will bring on an attack outside of a person's "regular interval" attack schedule while in cycle, to the extent that such regularity actually exists. (And maybe a little outside of a cycle, too -- seems like a lot of people who think their cycle has ended find out from the "beer test" that it isn't -- certainly at this point they are not having attacks at regular intervals, or they wouldn't think their cycle might be over.) 

    Overall, in the list you provided, maybe you're just naming things differently -- if something makes an attack worse and/or longer, or brings on an unexpected attack, I think we have put it in the category of a "trigger," but maybe it should be called a "worsener."  Whatever they are called, they are things to be avoided (in general, though not all of them for everyone). 

    I knew a person with CH who could drink anything alcoholic, any time including in cycle, and get not any effect on attacks.  I know a lot of people consider stress a factor, and I also knew a person who, like jon', had their longest attack-free period when under very significant stress. Generalizing about CH can be risky.

    Just for the record, I also know someone who stayed away from caffeine at all times except when in cycle to help directly abort an attack. It wasn't that caffeine drunk at other times would trigger anything, just that this person found that the abortive effect was stronger when that was the only time they drank caffeine.

    More importantly to me, I have to say that if you are having so many attacks, and some of them so long, maybe we can add some suggestions to the ones you have offered to provide.  Oxygen, as jon' says, being the first but not the only.  This file contains some suggestions that I gathered from this group's experience: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  

     

    • Like 3
  15. CHB, that indeed does not sound like a top-flight neurologist.  Was oxygen discussed?  You might want to look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/   And of course an MRI should be done, to rule out other situations.

    As for causes, I have to say there's not a lot of discussion of that here, either, though many theories get brought up.  Many people with CH remember having had head trauma, but many don't. Most people with CH smoke, but many don't.  Stress?  Psychological trauma?  Weather?  Cellphones?  All discussed.  But no one's gonna know a cause, and knowing it doesn't help much with treatment (some people find they benefit from keeping cellphones away from their cluster side).  

  16. This is what UptoDate, an online resource for doctors, says. You should read the whole article -- a lot of good info at the end: https://www.uptodate.com/contents/supplemental-oxygen-on-commercial-airlines-beyond-the-basics#:~:text=In general%2C airlines do not,rented through an oxygen supplier.

    "In general, airlines do not provide medical oxygen, but allow passengers to bring a battery-powered portable oxygen concentrator (POC) for use in flight. POCs that are approved by the Federal Aviation Association (FAA) can be purchased or rented through an oxygen supplier. Approved POCs will have a label indicating that they meet FAA regulations. Airlines may require notification of the need for in-flight oxygen at least 48 hours before the trip, making it necessary to undergo testing at least three days before travel."

    Here is a link to what TSA says, but it's really covered in the article: https://www.tsa.gov/travel/special-procedures

    • Like 2
  17. 16 minutes ago, EmpiresBurn said:

    Everything is so new to me so I have no idea what I'm looking for. 

    Since it's new to you, and you don't mention what you are doing to prevent or stop attacks, you might want to take a look at this file for an overview of treatments: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/   Although the file's title refers to "non-busting," there is a summary of busting protocols at the end.

    • Like 2
  18. 1 hour ago, kat_92 said:

    I have a feeling that if something like this actually went through, getting it prescribed for CH would be almost as challenging as getting oxygen. It would be an uphill battle. I don’t want to be negative, but I just think it would happen that way. I am planning to start growing my own MM soon. 

    You might be right, kat', and in any event it won't be any time soon.  But the fact that the FDA approved Yale's psilocybin/CH study, and the general buzz about psilo and other psychedelics, might at least make this kind of path a whole lot easier than it looked five or ten years ago.   

    • Like 4
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