Jump to content

CHfather

Master Members
 View Profile  See their activity

  • Posts

    6,770

  • Joined

  • Last visited

  • Days Won

    463

 Content Type 

Posts posted by CHfather

    Verapamil v Prednisone

    in General Board

    Posted

    I finally got my non-rebreather mak and it is not working at all

    kk, some basics:

    Does your mask look like this?

    non-rebreathermask.jpg[/img]

    Is the bag attached to the mask filling up with oxygen, and then going down as you breathe in the oxygen, and then refilling so you can breathe in again?  That's what should be happening, and the refilling should be happening quite quickly if you're at 15 lpm.  Have you checked the setting on your regulator to be sure it's at 15, or at least 12 lpm?  The settings for cannula usually are much lower.

    The white dots on this mask in the picture (and probably on your mask) are the "little breather holes" that b.g. was talking about. Block them off as you breathe in.

    If you're not doing it now, try swigging an "energy drink" (RedBull, Monster, etc.) or at least some coffee just before you start on the oxygen.  Be sure you get on the oxygen at the very first sign of an attack.

    Hope this helps!

    Verapamil v Prednisone

    in General Board

    Posted

    Welcome, MLE.  Thanks for the thorough report.

    Here's my broken-record spiel: There are a very small number of people for whom O2 doesn't work.  In case after case here, when people say their O2 didn't work, it often does work when they either (a) have the right system, which they usually didn't have in the past (15 or more LPM of flow, a non-rebreather mask); or (B) upgrade their system in any of a variety of ways.  You can read about that here, and I urge you to do so:  http://clusterbusters.com/wp-content/uploads/2012/11/OXYGEN-12-2012.pdf

    Many people here use LSA from seeds to treat CH very successfully.  If you don't have a reliable source of psilo, you can grow it, but that takes a while.  I'm sure that  most folks here would tell you that if you're seriously wanting to try busting and you don't have psilo, LSA is definitely worth a try.  Read more about that here, and read the other numbered files in the "Clusterbuster Files" section, too: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

    It is widely, though not universally, believed that vicodin, as an opiate, will interfere with busting.  So you'd probably want to "detox" from that for five days before taking psilo or LSA.  I don't know about the clonazepam, but someone here surely does.  Getting through the detox period is a lot easier if you have O2 that works.

    Have you tried energy drinks?  Melatonin?  The D3 regimen?

    Hello!

    in General Board

    Posted

    Welcome, Rayvn.  20 years!  How terrible -- but good that you're now diagnosed.  There are some very good folks from this board up there in the Portland area.

    As Jeff says, you want oxygen!!!!  It's the best friend of most people with CH.  I once looked into getting welding oxygen in Portland, so I know it can be done.  If you can't persuade your insurance to cover medical O2, I think almost everyone here would recommend setting up a welding-O2 based system.  You can read more here about what you would want/need: http://clusterbusters.com/wp-content/uploads/2012/11/OXYGEN-12-2012.pdf  (You can get to the same file as a Word document from here: http://clusterbusters.com/?page_id=77)

    Is your sumatriptan injectable?  Seems like you would be having better than 25% success with that.  If it's pills you have, try to get the injectable sumatriptan instead.  [i see that crafty Bejeeber snuck in ahead of me on this one.]

    Do you know about using energy drinks (RedBull, Monster, etc.)?  For many people, an energy drink at the start of an attack can significantly reduce the severity, or even sometimes abort it.

    Do you know about the "vitamin D" regimen that helps a lot of people?  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

    Melatonin at night?  Also helps a lot of folks.  There are quite a few other things, too, such as licorice root and kudzu, that have helped many people.  (There are also other pharmaceutical meds, such as prednisone and lithium, that can help, though most people here would say that over the long run they can have some undesirable effects, such as extending cycles and causing rebound headaches.)

    Might you consider "busting"?  Read the basics here-- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 -- and if it interests you, read the other files (the numbered ones) over in the "ClusterBuster files" section of this board, which you can get to from the "Forum Jump" at the bottom right of this page, or from the "General Category" heading at the top of the message boards.

    Mostly, please feel free to ask questions -- you'll get answers.  (Also, the search bar at the top left is a good way to find out more about specific things.)

    What an amazing person you must be to have endured this for 20 years.  Things can now start getting a lot better for you.

    Clusters after 20 years

    in General Board

    Posted

    "what are aspirin, caffeine, and acetaminophen?"   http://en.wikipedia.org/wiki/Goody%27s_Powder

    petty_zps457acdaf.jpg[/img]

    "who is richard petty?"  (dale jr, too, as of this year)

    unfortunately, no googling was permitted on jeopardy.

    Clusters after 20 years

    in General Board

    Posted

    I don't have a mask just a thingy that goes in my nose.

      This kind of cruelty just makes me nuts.  As spiny says, you want a non-rebreather mask. The cannula is  useless. DEMAND this!  If you are challenged about it, refer them to the JAMA article: http://jama.jamanetwork.com/article.aspx?articleid=185035

    (And if you have the energy, tell them you're not paying for the oxygen they made you waste.)  When you get the mask, please read page 8 in this: http://clusterbusters.com/wp-content/uploads/2012/11/OXYGEN-12-2012.pdf  It has advice for using the mask.

    Anyone using Kudzu?

    in General Board

    Posted

    Here's some info from Dr. Sewell's study of kudzu in terms of dosage (http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.2008.01268.x/pdf):

    >>>Efficacy for cluster attack in this group showed a

    clear dose–response relationship: 3 of the 4 treatment

    nonresponders were taking less than 1000 mg a day

    (total pill weight; actual dose of kudzu is substantially

    less), and only 3 of 7 (43%) patients taking kudzu less

    than 3 times a day showed benefit. Of the 6 who

    reported no effects or worse effects from kudzu, all

    were taking it less than 3 times a day, whereas 8 of 10

    (80%) taking the more frequent dose benefitted

    (Fig. 1). Side effects were mild and infrequent, the

    most common being gastrointestinal effects experi-

    enced by 4 (25%). <<<

    There are very extensive discussions of kudzu at ch.com, which you can find by typing kudzu into the search bar at the top left of the page.  As I remember, there was some concern back then that kudzu might block the effectiveness of triptans if you took the kudzu too close in time to the triptan.  I don't know if that was verified or not.

    Have you tried melatonin?

    Clusters after 20 years

    in General Board

    Posted

    i know I don't have the right type of mask
    Do you mean that you don't have an O2ptimask, or you don't even have a non-rebreather mask?  Can you remove the mask and suck air directly from the plastic that connects the tubing to the mask?

    I am just wondering how fast you usually go through a tank of O2?I have used it 3 times and it is empty. I thought it would last longer than that. I am only using 15 lpm
      An "E' tank, which must be what you have, will give you about 35 minutes of O2 at 15 lpm.  (An E tank is a little over 2 feet high and 4-5 inches in diameter (14" in circumference).)  So like you have said, that's about 3 sessions, or less.  If your mask is inefficient, of course you're going to get less out of it.  Have you tried drinking an energy drink before you start on the O2 -- that can speed up the process.

    I don't know why your insurance wouldn't cover the standard prescription for CH (O2), or why your O2 supplier would give you two E tanks instead of an M tank (an M tank holds five times as much O2 as an E tank).  Can you request/demand an "M" tank?  That's the standard size for CH.   At the least, can you have them come replace the empty E tank with a full one?  Since the O2 works for you, you might want to try to set up a system using welding oxygen in the long run if you can't get insurance coverage, but for now, I'd really try to get that bigger tank. 

    Clusters after 20 years

    in General Board

    Posted

    I am seeing the doctor tomorrow and insisting on the O2. 

    Consider printing out that article about O2 (the Journal of the American Medical Association one) and bringing it with you, and/or emailing/faxing it to your doc's assistant in advance.  Like you say, most docs don't know much about CH.  Some are willing to be educated.  Many people here have found that a nurse or physician's assistant is a good ally to have.  If your doctor won't give you O2, you can create your own system using welding oxygen.  Keep us posted!

    Clusters after 20 years

    in General Board

    Posted

    If your doctor won't believe that you have CH when you now know that you do, get another doctor fast.

    First thing you want is OXYGEN. http://clusterbusters.com/wp-content/uploads/2012/11/OXYGEN-12-2012.pdf

    Or maybe the first thing you want, right now, is the way to use less trex with each injection. I promise you that Bejeeber will be along soon to point you to the way to do that.  If he's not (but I'm sure he will be), I'll try to find it.

    Have you tried drinking an "energy drink" (RedBull, Monster, etc.) at the first sign of an attack?  Helps a lot of people.

    I would say that in terms of prescription meds, maybe not much is very new. Prednisone, verapamil . . . Lithium is used less, but still prescribed.

    There are a lot of non-prescription strategies that have worked well, "busting" being one of them.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865     Also the vitamin D3 regimen -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 -- and licorice root: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

    More, too, but that's a start.

    morning glory

    in General Board

    Posted

    AW, here's what Ricardo (one of the top experts here) said in another thread about morning glory seeds:

    >>I would start on the low end (100) and see what it does before boosting it up . . .  You want certain strains . . . If you stick with the Heavenly Blue Morning Glory seeds, take 100 hundred of them, grind them up, soak in water for about an hour, strain out the gunk, and drink the remaining seed water you should be fine.<<

    There is more discussion at other threads. This one is at http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1331060106/10, starting about halfway down the page.  If you type "morning glory" into the search bar at the top left of the page, you will find more.

    Short term memory loss / blackout?

    in General Board

    Posted

    It's believed that the taurine in energy drinks in addition to the caffeine makes them particularly effective. They are very, very commonly used by people to abort or diminish CH attacks. Maybe he should just try drinking a RedBull or Monster or "energy shot" such as 5-Hour Energy at the start of his next attack and see what happens.

    Many, many people have showed up here saying that oxygen doesn't work for them, and virtually all of them -- one just in the past week -- have found that it will work if used properly.   The most recent person went from thinking that oxygen didn't work at all to aborting attacks within five minutes.  That's a very nice change. Please read this file, including the "addendum": http://clusterbusters.com/wp-content/uploads/2012/11/OXYGEN-12-2012.pdf

    Has he tried the vitamin D3 approach, which has made a big difference for lots and lots of people?  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

    More to the point because of where you are (at the ClusterBusters website), has he tried what people here do, which is called "busting"?  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865

    Like you, I sat with a loved one night after night who endured attacks with no treatment and was not taking any preventives. When my loved one started with energy drinks, got oxygen to work, did the D3 regimen, and busted, everything changed.  While she was enduring those attacks night after night, she had many scary symptoms similar to your husband's -- violent vomiting and severe light sensitivity in her case, among other things.  She was also remarkably brave during the attacks and remarkably upbeat the rest of the time -- but there was no reason for her to be suffering like that in the first place.  I would urge you and your husband to keep trying. (Many people with CH have a hard time "keeping trying," because they have had their hopes up and then experienced severe disappointment.  But I'm urging you to help him get past that if it's an issue and keep trying.)

    BOL-148

    in General Board

    Posted

    I have just been told that i can obtain some BOL 148 compound. it will supplied as a 'refference substance'.

    I hope this is true. But unless you have some qualifications (e.g., you are a medical laboratory) that others don't have, I'd be very, very surprised if it is.

    Frustrated....advice needed please

    in General Board

    Posted

    Two cents from me.

    The most useful description I have found is telling people that a doctor at Harvard Medical School (Halpern, of course) has compared CH pain to the pain of having a limb amputated without anesthetic.  But not once: day after day, or many times a day.   

    I think that taking it out of the realm of "headache," which people immediately think they understand, and into something they can imagine happening to them, or even have seen in a movie or tv show, causes a different response.

    I have also thought that inventing a different name to tell people, one without "headache" in it that sounds serious, would change the hearer's mindset.  I think you could just make one up--"opticephalagia," for example, "cephalagia" meaning "headache."   But I would also want people to know that it's "also known as" cluster headache.

    Looking for a qualified Dr.

    in General Board

    Posted

    So sorry to read about your son. I'm also the parent of a person with CH.  At the bottom of this message, I've pasted a list of doctors in Virginia who have been recommended by people with CH.  As you'll see, there's one in Virginia Beach.

    The most important thing for your son is oxygen, which any knowledgeable doctor will prescribe (but many, not being knowledgeable, do not).  A flow rate of least 15 liters per minute and non-rebreather mask.  To read more:  http://clusterbusters.com/wp-content/uploads/2012/11/OXYGEN-12-2012.pdf

    Some things a doctor probably won't tell you about:

    - If he's having attacks right now and doesn't have oxygen, try an "energy drink" (RedBull, Monster, etc.)  at the first sign of an attack.  That helps a lot of people.  (Coffee helps, too. The "energy drinks" contain caffeine and also taurine, which many people think also helps.)

    - There's a vitamin-D based regimen that has helped a lot of people. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

    - Others have found good relief from a licorice root treatment: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

    - Most people here have turned away from the "standard" prescriptions that you'll get from even a knowledgeable doctor -- verapamil, prednisone, imitrex, etc.  These things can work, and it's understood that relief is your #1 goal right now.  If you haven't been there yet, you should check out clusterheadaches.com, where these conventional treatments are discussed by many people. (Go to the "menu" tab on the left and you'll see a link to the ch.com message board.)  We are also happy to help you here with any questions about anything.  The methods that are discussed most here -- referred to as "busting" -- involve taking psychedelic substances which, many feel, treat CH better than conventional medications with fewer side effects.  In many cases, they can be taken at levels low enough to have no psychedelic effect at all, but still have strong effects against CH.  You son seems too young for this, so I am just alerting you.

    Here are those doctors.  Bless you for stepping up for him.  Now that he has a diagnosis, the challenge of CH will be a lot more manageable.  And there are much better treatments on the horizon, from medications to devices.  It could be that reasonably soon CH will be a manageable condition.  We all pray in our own ways that that day will come soon.

    Alexandria:

    Dr. Stuart Robert Stark

    Neurology & Headache Treatment Center

    Charlottesville:

    Priscilla F. Potter, MD

    University of Virginia Health System

    Blacksburg:

    Dr. Steven D. Nack

    Neurology Services of Southwest VA

    Richmond:

    Dr. Michael Mareska

    Kara Clark, NP

    Neurological Associates Inc

    Virginia Beach:

    Dr. Allen R. Fenderson

    Holland Road Family Medicine

    Woodbridge:

    Dr. Naurang S Gill

    Prince William Neurology Inc

    My Permanent cure

    in General Board

    Posted

    Looks like it's time for Spiny, the poster child for barometric pressure fluctuation as a trigger, to load up the belongings and the hubby in a U-Haul and make the permanent move to SW Florida by the end of the week. That'll leave you one day for packing, Spiny.

    Maybe she should use part of that day to check first with Jeff, since he lives (according to his signature info) in Naples, about 35 miles due south from Ft. Myers.

×
×
  • Create New...