Jump to content
ClusterBusters

Leaderboard


Popular Content

Showing content with the highest reputation since 10/15/2019 in all areas

  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
    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.)
  5. 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!
  6. 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.
  7. 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.
  8. 2 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.
  9. 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
  10. 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.)
  11. 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
  12. 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
  13. 2 points
    Into Light

    Freud

    yes what they said
  14. 1 point
    HI everyone, nothing much to say except that I hope everyone is feeling substantially less or zero pain. I pray every day for myself to CH free and for all of you. What's works for me is chanting NAM MYOHO RENGE KYO. And Verapamil! I certainly don't want to push religion on anyone but I wanted to tell you all what works for me. We can and will defeat this. To your health and happiness always, Jimmy Martinez-
  15. 1 point
    kat_92

    Nausea with D3 Regimen & Cofactors

    I split the vitamins up into 3 in the morning and 3 at night. Always take them with a meal. I was instantly vomiting after taking them all on an empty stomach which Wasn’t smart on my part. Good luck!
  16. 1 point
    CHfather

    Nausea with D3 Regimen & Cofactors

    Send him a PM. Click on the envelope icon at the top right of any page, and type Batch into the To line. If he doesn't respond here, he will surely get back to you. The pinned post is outdated, and now even the link to more recent information is out of date. This will get you to Batch's discussion of the protocol (scroll down the page), but I'm not sure how much it will help you with your specific question. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people
  17. 1 point
    ChrisK

    Question about fatigue

    only when I take the additional 240mg"s of the verap. makes it tough to work out, and mostly drained of energy. Like I said when the D3 regemine kicks in and I drop the extra verap, my energy levels go back to normal. Also fatigue is always a problem in a cycle for me due to the stress. But as soon as I'm pain free, I'm good to go.
  18. 1 point
    Brain on fire

    Freud

    One day I will give Freud a great big hug, shake his hand, thank him & we will converse.
  19. 1 point
    MoxieGirl

    Thank you

    Hi, Alcohol isn't a trigger for everyone. Doesn't affect my clusters at all, and 9 or so shots of vodka will abort a migraine. So that's handy for when the pills don't work. This forum very much saved my life when my clusters were at their worst. I was literally putting a date in my calendar for when I was going to exit planet Earth. Then came here, created an account and it turned my life around. There be good people here. xx Mox
  20. 1 point
    ThatHurtsMyHead

    Risk / Dangers of Oxygen?

    Exigeous, Oh and don't forget to stay on the O2 for 5 mins or so after the attack stops. That normally prevents the attack from coming right back. Cheers, J
  21. 1 point
    Newbie13

    Thank you

    40mg 3x per day for the next few days, then up to 80mg 3x for 3 months assuming I can tolerate it. I have low BP generally so keeping a close eye on it. I had a painless awakening this morning - it was such a weird feeling. Trying to describe this to loved ones is so strange. My heart goes out to everyone who has dealt with this for years... holy crap it's bizarre.
  22. 1 point
    GuaymasJim

    Chronic Cluster a Year OR Longer?

    I really hate to be the bearer of bad news, but my first CCH struck on Jan. 11, 1970. My last one was at 4am this morning. I experience as few as 1 per day and as many as 8 (aka daisy chain or bone crusher) with 2 being about average. I have never experienced a remission for more than three weeks-and very seldom that long. Some are much worse than others (there is never a good one), but they have been with me for just short of 50 years (I'm 72 yo). I have used most of the tricks memorialized here with various degrees of success as well as endured all of the misdiagnosis, misconceptions, inappropriate medications, horrible side effects, suspicions of malingering/exaggeration, procedures, experiments, studies, heartbreaks, and disappointments which unfortunately are also memorialized on these pages. I have been on the receiving end of unbelievable help and compassion from Drs. Kudrow, Diamond (RIP), Goadsby, Green, Cohen, Butler, and a host of others. I have also been subjected to the most egregious and reprehensible mistreatment imaginable at the hands of the most morally challenged as*holes masquerading as pseudo "medical professionals" that the VHA has to offer. Most importantly though, I am still alive and have had a satisfying life-quite different from what I was planning on Jan. 10, 1970 1LT USMC-but satisfying none the less. Since all of my medical care has been provided by military/VA, I actually have all of those years documented. Imitrex twice daily (approximately $500,000+) since it was approved saved my life, but ultimately caused two MIs on consecutive days. Silver lining: discovered asymptomatic CAD and got stents in time. Now its oxygen at 16 mL and opioids (Don't let anyone tell you that opioids don't have a legitimate place in the treatment CH-used properly they most certainly do!!! Moral of the story: We clusterheads are all different while at the same time we are are the same-special. We have a wealth of knowledge and experience which we are obviously quite willing to share, discuss, and even argue about. Wish you great success.
  23. 1 point
    Freuds mom

    Quick update

    FYI I know many have been concerned about Freud. He is currently in the hospital making a swift recovery. He will be back on line soon. Thank you for all the prayers and good wishes. Best regards to a pain free future for all, Freuds mom
  24. 1 point
    Dana129

    Life Update

    Thanks BOF, thinking about it gets me a little bit teary, I thank God every day this place exists, and that I was born in a time where cluster headache sufferers have the knowledge we have now, without that I’d never be at this point, realistically, to be blunt, I don’t think I would’ve lived past 30 with how clusters were affecting my life, then I found this place, I owe everything to this forum
  25. 1 point
    Dana129

    Interesting info on legalization

    You wouldn’t by chance know if the US is accepting migrants from Australia do you?
×