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Showing content with the highest reputation since 10/12/2019 in Posts

  1. 5 points
    Freuds mom

    Freud

    Sorry if I didn’t reply to all the prayers & good wishes sent to Brian. He appreciates them and is making progress. He misses everyone and should be back real soon.
  2. 5 points
    Brain on fire

    Freud

    Freud has assisted so many on a 1 to 1 basis on this forum. He is an inspiration for other's to do the same. Just as he inspired you Mox.
  3. 4 points
    MoxieGirl

    Freud

    I just offered to help someone in the same way the Freud helped me awhile back. Made me think of him, and I hope he's doing OK and will be back soon. My heart goes out to you Freud. Hang in there, you have friends that care. xx Mox
  4. 3 points
    jon019

    New - Looking for Support

    Jon - I’ve heard great things about oxygen therapy but haven’t had the opportunity to try it. If your doc hasn't suggested/INSISTED the "standard of care/#1 abortive"...which is O2... time for a new doc....preferably a headache specialist....O2 has saved lives and sanity in clusterville.... It sounds like it gives moderately faster relief, which would be a godsend. .....how's 5-10 mins 90% of the time for me.....without ANY of those nasty side effects you mention...relatively inexpensive.... easy to use...way more portable than non clusterheads will tell you...can be obtainable by self pay if the insurance won't cover....from welding supply shop if not.......... I have a similar concern about so many medications - id like to know which one works in the future. I’ll see how feasible oxygen is with my insurance. ...a "typical" protocol would be prednisone to break a cycle while the prevent kicks in (10-14 days)...doubling up with two preventives (Verap and Depo) is unusual and I would say lazy...but then I do not know your med history so there could be valid reasons for that (he says doubtfully).... .....what is the verap dose (6 x 80 mg = 480?).....that would be a recognized 'sweet spot" amount...many require much higher (I used over 1000 mg/dy in hi cycle)....if you ever figure a pattern try timing the doses just prior to expected hits... ...if ya gonna use a triptan you'll want injectable or nasal (i use Zomig nasal spray 5 mg) as a last line of defense when all else fails...in my case, the Zomig has few, if any, side effects, no rebounds, and a long half life compared to sumatriptan....pills are worthless as an abortive and require exquisite timing to be at all useful as a prevent.... ...you are in the right place to learn about busting..... ....the D3 regimen could make all of this moot...do it now...it's good for ya anyway.... best jonathan sorry to step on Bof post...typed this before saw that.... totally agree........
  5. 3 points
    CHfather

    Nausea with D3 Regimen & Cofactors

    Yes, from here. And he responded by PM to me here. I wasn't asking him about Ilya K's specific case, but about a good link to the D3 regimen, since the old one wasn't working. I have changed the links in the pinned posts. (Can't type "Ilya K" without thinking about David McCallum in "The Man from UNCLE." Ilya Kuryakin. A very old-time TV reference.)
  6. 3 points
    You need to get a solid diagnosis. You provider is just throwing stuff against the wall to see what sticks. Indomethicin is used to support the diagnosis of hemicranium continum as it does not help clusters as a general rule. O2 is very helpful for folks with classic episodic cluster headaches. A provider reluctant to prescribe in the face of a cluster diagnosis has no clue what they are treating or how to manage cluster headaches. Oral triptans are useless to address cluster headaches. Subq or nasal triptans can be very helpful to alleviate acute pain but you run a risk of rebound headaches. Once you have an accurate diagnosis you can develop a treatment strategy.
  7. 3 points
    Brain on fire

    Risk / Dangers of Oxygen?

    Wow! My oxygen Rx 20lpm STAT with non-rebreather mask 20mins as needed for cluster headaches. My primary care doc rocks! If says 'I don't know." I sit in room with while it gets looks up it. If not satisfied with what is found online "I'm going to makes some calls, be right back." Not once have I left that office without answers. No PAs, no nurse practioners just the nurse for vitals & I always see my doc. 1st appointment, spent 2 hours with me listening. That is the beauty of a small practice & a darned good doc!
  8. 3 points
    JJinNJ

    Freud

    Yes BOF! Freud...My fellow Jerseyite, Get well soon! He helped me quite a bit on an individual basis when the beast first came knocking.
  9. 3 points
    Pebblesthecorgi

    60 minutes

    The important thing is psychedelics are being reintroduced to society in a rational manner. Responsible researchers are conducting studies in a though and thoughtful way. Hopefully their results will contribute to the rescheduling of these substances so folks have an opportunity to explore their benefits without fear of prosecution. Having psilocybin or LSD available as a pharmaceutical type medication will help answer questions about dosing, frequency and efficacy. The effects and benefits are so strong it will be hard to argue psychedelics have no medical value.
  10. 3 points
    Into Light

    Freud

    yes what they said
  11. 3 points
    Batch

    Females and O2

    Kat, Gender has little to do with the efficacy of oxygen therapy in aborting CH. If used properly with hyperventilation at forced vital capacity tidle volumes either with 100% oxygen at 30 to 40 liters/minute with a non-rebreathing oxygen mask, hyperventilating with an oxygen demand valve, or by hyperventilating with room air for 30 seconds at forced vital capacity tidle volumes then inhale a lungful of 100% oxygen and hold it for 30 seconds then repeat this sequence until the pain is gone. In all three methods, the average abort time should be around 7 minutes with > 95% efficacy and it has nothing to do with gender. What most doctors and neurologists don't understand about effective oxygen therapy as a CH abortive, is oxygen is only half of the abortive. The other half involves blowing off CO2 faster than the body generates it through normal metabolism by intentionally hyperventilating for 6 to 7 minutes pushes the body into respiratory alkalosis. In simple terms blowing off CO2 by hyperventilating shifts blood pH to the alkaline side of neutral making it more alkaline, hence the term respiratory alkalosis. I need to point out that respiratory alkalosis from intentionally hyperventilating is temporary and harmless. It clears normally within a few minutes once returning to normal breathing rates. Respiratory alkalosis does several things that help abort CH. The first effect of respiratory alkalosis with an elevated arterial pH, is to slow the expression of Calcitonin Gene-Related Peptide (CGRP) and Substance (SP) by neurons in the trigeminal ganglia. CGRP and SP are responsible or the neurogenic inflammation and pain we know as CH. What also happens during respiratory alkalosis is elevating arterial blood pH in the lungs to the alkaline side of neutral, increases blood hemoglobin's affinity for oxygen. This enables blood hemoglobin to carry up to 117% of oxygen where breathing a little faster than normal elevates blood oxygen to only 99%. This super-oxygenated blood flow and low arterial pH does two things. It speeds up the breakdown of CGRP and SP and It also triggers triggers pH homeostasis when chemo receptors in the brain stem and aortic arch sense the low arterial CO2 concentration. These chemoreceptors signal the breathing control neurons in the brain stem to slow the respiratory rate. They also signal the heart to beat more slowly and arteries and capillaries throughout the body including the brain and trigeminovascular complex to constrict. All this happens to slow the flow of blood to the lungs to prevent the loss of CO2 and allow its arterial concentration to rise back to normal levels. While we're intentionally hyperventilating, this triggers the vasoconstriction throughout the trigeminovascular complex and this serves as a significant CH abortive effect. I can hear the wheels turning... WTF are Forced Vital Capacity Tidal Volumes? The answer is simple once you understand the terms. Tidal Volume = The volume of air (or oxygen) inhaled and exhaled. The air comes into the lungs during inhalation and goes out when exhaling, just like the tide comes in and goes out. Vital Capacity = The maximum amount of air a person can expel from the lungs after a maximum inhalation without thinking about it. Forced Vital Capacity = By doing an abdominal crunch, tightening the abdominal and chest muscles as in doing sit-ups at the end of a forceful exhalation, squeezes out an additional half to full liter of exhaled breath highest in CO2 content. If you hold the abdominal crunch and chest squeeze for at least a second, your exhaled breath will make a wheezing sound. Try it now and hold the squeeze until your breath makes a wheezing sound. Accordingly, hyperventilating at forced vital capacity tidal volumes pumps CO2 from the blood stream much faster than "normal respiration." Now for the proof this method of oxygen therapy and breathing techniques makes oxygen therapy very effective with an average abort time of 7 minutes. We conducted a pilot study of this method of oxygen therapy (hyperventilating with 100% oxygen) with seven CHers (6 CCHers and 1 ECHer, six men and one woman) in 2008. Four of the CHers used an oxygen demand valve and the other three used a Flotec 0-60 liter/minute oxygen regulator set a a flow rate of 40 liters/minute with a Cluster O2 Kit mask from CH.com equipped with a 3-liter reservoir bag. Abort times with either method were the same. Each of the seven CHers collected abort time and CH pain level at start of therapy for every CH aborted for a period of 8 weeks. This came to a total of 366 aborts with this method of oxygen therapy. 364 of these aborts were rated as successful with a complete CH abort in 20 minutes or less for a success rate of 99.4%. The results are plotted out in the following graphic. The average abort time for these 364 aborts was 7 minutes. One of the pilot study participants collected abort time and pain level data for a week while waiting for his oxygen demand valve, using a disposable non-rebreathing (NRB) oxygen mask at an oxygen flow rate of 15 liters/minute. As you can see, the demand valve method (hyperventilating with 100% oxygen) results in CH aborts 3 to 4 times faster than using a disposable NRB oxygen mask at a flow rate of 15 liters/minute. We also discovered an interesting phenomenon that the higher the CH pain level, the longer it took to abort to abort the CH. This has never been reported in any of the previous RCTs or studies of oxygen therapy as an abortive for CH or Migraine. For reference, I hold a patent on the oxygen demand valve method of aborting CH. I've also over 15 years training in Aviation Physiology primarily involving oxygen breathing systems and their use in flight. Bottom line, hyperventilating at forced vital capacity tidal volumes with 100% oxygen or hyperventilating with room air at forced vital capacity tidal volumes then inhaling a lungful of 100% oxygen and holding it for 30 second then repeating this sequence 6 more times for an average total of 7 minutes are equally effective in aborting CH. Hope this helps. Take care, V/R, Batch
  12. 2 points
    Brain on fire

    New - Looking for Support

    Apologies if I seemed harsh. I just get really pissed when I see no oxygen, a boatload of meds with each of their own added risks & little to no relief. A decent doc doesn't sit & watch ya suffer. No apology necessarily @jon019 your post re caffeine just popped up, good catch.
  13. 2 points
    Dlions

    New poster - please help

    Really appreciate your support, will definitely keep this thread updated as I continue the doctor visits.
  14. 2 points
    ChrisK

    New - Looking for Support

    Blair, hang in there, this is the place for you. With all the meds you are taking no wonder you so tired. I get it. everyone is different but all the same. I also take verap 240mg twice a day when a cycle comes, and that zaps energy like crazy. Please look through this board and fine the D3 Regimen. That has helped a lot of us to where we are pain free in about ten days. worth giving it a try. Once it kicks in I can stop the verap and get on with my life. Hope this helps and keep us posted.
  15. 2 points
    Brain on fire

    New - Looking for Support

    Welcome to the forum Blair, sorry you need us & glad you found us. You'll get a ton of support & suggestions here. Hang in there. A few nice things about cluster headaches... they don't kill us, they teach us the value of pain free time & we gain a greater level of understanding & compassion for people who live with pain.
  16. 2 points
    CHfather

    New poster - please help

    Sounds like hemicrania continua to me. https://www.ninds.nih.gov/disorders/all-disorders/hemicrania-continua-information-page
  17. 2 points
    FunTimes

    New poster - please help

    Getting the head scans and tested is a good start to rule out anything else. Next doctors visit you have try to get a prescription for oxygen. You will need to use a non rebreather mask and a flow rate of up around 25lpm. You can search oxygen on this site and find a tun of information on it. I will also down a 5hr energy drink on my way to the oxygen to help abort the attack faster, some will use coffee or other energy drinks. The Vitamin D3 is another good thing that will not hurt starting today and will help with more then just cluster headaches. Read up on this site and ask a lot of questions and people on here will be more helpful then any doctors you will meet. Welcome to the site.
  18. 2 points
    Racer1_NC

    Let's get together

    I don't have the info in front of me but we have a CH'r in Charlotte, NC that is putting together a weekend meet and great the weekend of 12-14/15. I'll see him this weekend and have him come here to post up the particulars.
  19. 2 points
    Exigeous

    Risk / Dangers of Oxygen?

    You guys amaze me - but don't surprise me at all. When this first hit me I'd truly never felt so alone and helpless against it's fury. I had what I'm sure are the same thoughts as everyone else here, no one has ever felt this level of pain. No one. No one will understand. They will look at me like the asshole doctor at the ER did, clearly thinking I was faking or exaggerating in some way to get pain meds, etc. (I could have absolutely decked him when he said "well you'll just have to deal with it I guess"). While I wouldn't wish this on anyone knowing there are others who do understand and WANT to help is amazing. Thanks for the links to the O2 study, already printed. I'll print everything CHFather posted so I don't forget any of it (seriously, amazing post). As for a quick update on me - I haven't had an attack in 3.5 days, the longest before was 2.5 - they've been getting further and further spaced since they started with the duration of "level 10" screaming pain shortening each time (last was right at an hour, first attack 10 days ago was 5+ hours of screaming). I did start the D3 regimen right after my last attack so I'm not sure if the D3 regimen is 'working' or if they are just naturally spacing apart. Is that common? Does it mean anything - or just is what it is? Tomorrow morning is the PA at the neurologist so I'm just hopeful I don't have an attack tonight and they give me O2 without a fight. Again thanks so much for all your time and wisdom, had to say what it means. ~Ross
  20. 2 points
    CHfather

    Risk / Dangers of Oxygen?

    It's not uncommon that a PA is more helpful than the doc. This is the original O2 study, fully consistent with medical research standards: https://jamanetwork.com/journals/jama/fullarticle/185035 It wouldn't hurt to print it out and bring it with you. There is also some more recent research, less rigorous, showing that higher flows are better. All doctors and PAs have some kind of app that gives them core information about a condition. They will all show that oxygen is the #1 abortive (usually triptans are also #1). A commonly used app is UpToDate. You can ask the PA to look up CH. An O2 prescription should read something like this (write it down and bring it with you, because a lot of med professionals don't know how to write it): "Oxygen therapy for Cluster Headache: 12-15lpm up to 15 minutes with non-rebreather mask." There are abbreviations in there when it's formally written, but that's the content. You might also look here for a little more info about the other pharma things you might want. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ The linked-to article under the heading Pharma is clear and helpful (and also states that O2 is the #1 abortive -- I guess maybe you'd want to print that and bring it with you, too). So, sometime people have a CH "lookalike" that is most commonly some form of hemicrania. You can look that up -- hemicrania continua, paroxysmal hemicrania, any of them. As BOF says, oxygen is generally not effective against hemicranias. There is, however, a pharma drug, Indomethacin, that is effective. Some medical writers have said that if there's any doubt about whether a patient has CH or a hemicrania, they should do a course of Indo at the beginning of treatment. (Indo is very hard on the gut, for most people.)
  21. 2 points
    ThatHurtsMyHead

    Risk / Dangers of Oxygen?

    Exigeous, Correct, as Spiny mentions. O2 toxicity is only a risk at higher pressure than sea level PPO (partial pressure of oxygen) - SCUBA Diving. The only real risk at sea level or lower pressures is alveoli collapse in your lungs, (Those are the sacks that transfer Oxygen to your bloodstream and extract CO2 from your blood) but that's only a risk if staying on O2 for very long periods of time. This is due to Nitrogen washout. Nitrogen washout in the lungs can be prevented by simply taking a breath of regular air every 20 to 30 minutes when breathing 100% O2. That adds enough Nitrogen back to your lungs for proper function for a very long time. Definitely O2 is the #1 abortive. There's no side effects and it's much safer than ANYTHING the doc can give you. Cheers, J
  22. 2 points
    Brain on fire

    Freud

    Folks here are compassionate, but everyone doesn't come on everyday & some may have missed an opportunity to share the love
  23. 2 points
    Rod H

    Another score

    City wide garbage sale today. One of my treasures was a new to me welding O2 tank. $35 with a 2 wheel cart.
  24. 1 point
    spiny

    Nausea with D3 Regimen & Cofactors

    I loved that show!!! I did not remember his characters name. Good catch!! How about My Favorite Martian? Remember that one?
  25. 1 point
    spiny

    New poster - please help

    Hi Dlions and welcome. Just tiny bit to add. Often we have what we call 'shadows'. They can last all day. A low grade head pain compared to a real hit. I think this may be what you are describing. It makes your head sore and ache too. Things like bending over to pick something up tends to make them worse for me. They are quite common. So, if you look at it that way, you are getting hit 2-3 times per day. That would be very consistent with CH. The rest of the time you are suffering shadows - which hurt. A lot of us take some caffeine for that part as well as a true hit. You can do energy drinks or coffee. Tea is not strong enough. Taurine in the Energy Drinks is thought to aid the caffeine in ditching the pain. But some, who can't take Energy Drinks, use coffee to great benefit. I too strongly recommend the D3 Regimen. All good for you vitamins that fight inflammation. It has been a major game changer for me and many others too. If I go off of it for more than two days, I will begin to get hit. So, yes, I am convinced it works. For me and many others too. And no doctor needed to do it. You do need to get up to date blood work. But, you can begin while waiting for that appointment. ATB
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