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Brain on fire

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  1. Like
    Brain on fire reacted to eileenbunny in 2019 Patient Conference   
    14th Annual Cluster Headache Patient Conference
    Talent Show
    September 19, 2019
    We are excited to showcase some of the most talented Clusterheads at this year’s conference. If you sing, dance, play an instrument, or do anything else exciting (and suitable for an audience), we want you to audition!
    Please send your video to Timf1913@aol.com by July 15th, 2019.
    The top 10 will perform on Saturday, September 21, 2019 during the Clusterbusters Farewell Dinner.
    You must be available and plan to attend the conference in order to apply.
    We may be limited in the A/V equipment we can supply so please plan accordingly.
    We will post results of the auditions on Facebook and our website event page on July 30, 2019.
    We will also be providing a display area for anyone that wants to display their talents. Let Tim know at the above email address if you’d like to display your visual art. Space may be limited. We’ve witnessed a lot of great talent over the years and we’d love to have you share it with the rest of the community.
    Let’s show The Beast what we can do!
  2. Thanks
    Brain on fire got a reaction from Into Light in info sheet, general and IMPORTANT Oxygen info   
    870 CGA fits E tanks, that is an 870 CGA.
  3. Like
    Brain on fire got a reaction from Dana129 in Australians beware   
    Heard this, it isn't verbatim. Politicians should stop practicing medicine without a license. They have no right to choose what we do with our bodies.
  4. Like
    Brain on fire reacted to Rod H in Score   
    Picked up 2 welding o2 tanks from a buddy for $40 today. Nice edition to the arsenal. 
  5. Like
    Brain on fire reacted to BostonHeadacheDoc in New here but not new to the evil!   
    Hi bobcat, 
    Well that sounds rotten. Certainly not CH as the headache is all day, also CH is strictly one sided- sounds like yours is not? Not CH in which case verapamil is not going to help at all at all. Indomethacin is non specific, certainly a good anti-inflammatory, beware known to be very irritating to the stomach. Best avoid using the term cluster-migraine as it causes mass confusion and it is mostly used by folks who know not what the attacks are. 
    Your story at the gym (at least you were lifting a dumbbell) and sudden headache- that is often one of 2 things, a thunderclap headache- which can be a syndrome known as reversible cerebral vasoconstriction syndrome (RCVS) but that only lasts- days to weeks; or could have torn a muscle, ligament or other neck hardware resulting in a cervicogenic headache (caused by neck problem). I totally understand why they thought of low pressure headache- can present with quick onset headache focused at the back of the head (can be thunderclap). Low pressure/low CSF volume headache is generally positional - you get much better quickly lying down, with head down, only for the pain to come back quickly when upright.
    Out of control high blood pressure can also present like this- as you have high blood pressure you had better be measuring your blood pressure at home (with a home BP kit) to make sure it is not very high). Botox is not going to help you.
    I was recruited to the Graham Headache Clinic at Brigham and Women's Faulkner Hospital April 15th. Fell free to PM me if you have any Qs or bmcg@bu.edu 
  6. Like
    Brain on fire reacted to Milelli in Chronic Cluster Patient Pain Free for 11 days   
    It is very nice to hear that this method starts working for after only 11 days. I wouldn't get through with this diet so my deepest respect! Regarding the long-term effects one of the problems is that your body will loose the ability to process carbs. Not only because of this reason it is  advisable to consider keto as a diet only! But as long as you are painfree it serves the purpose.
    The problem seems to be the point when returning to normal food. In the first paper of C. Di Lorenzo et al. [1] he wrote: One of patients that responded in the first month of diet decided to revert to SD and CH recurred after 7 weeks. It would be interesting to know if the were stopping the diet abruptly from one of the other day. Does a neurologist supervise you during the diet?
    However, I myself would stay on this diet a couple of month as long as it keeps me painfree. After that I would VERY slowly increase the amount of carbs week by week. I am thinking of desensitization like it works for people suffering from allergy reactions. Maybe this would have a similar effect. If this worked, I would add slow carbs like oats to my meal plan step-by-step. As a already mentioned above, on a slow carb diet you can stay for a long period of time.
    Please consider that these are only my thoughts and I am not an expert! I just want to share my ideas about this topic.
    Have you considered to ask the authors of the papers for advise? It sounds like they are really interested to help. 
    Please keep us updated! Best regards, M
    [1] Cluster headache improvement during Ketogenic Diet, 2015
  7. Thanks
    Brain on fire reacted to devonrex in Chronic Cluster Patient Pain Free for 11 days   
    I would not say the only people are type 1, it can happen in type 2, but it is rarer. Anytime your insulin runs very low, which in some can be caused simply by biology. They do not produce a lot of natural insulin. 
    As in everything, there are studies and who knows if they will be proved cause and effect, I mean eggs, good, bad, good, bad, good, maybe. as one example, but it does not take more than 3 minutes to find credible articles. https://www.acc.org/about-acc/press-releases/2019/03/06/10/29/low-carb-diet-tied-to-common-heart-rhythm-disorder  that is a study by the America College of Cardiology.  I am not saying "Omg no, bad" just for anyone who is desperate, like some of us are, to look not only at benefit but risk, I weigh every single treatment I do in terms of "If it works, great, is it sustainable? Will it fit my life? Do I have a family history of something that this could make worse?" etc etc. 
    I suppose, I am cautious by nature and while I would love to see this as an effective long term answer for all, also feel people should know to look at the other side of the coin.
    Even Batch strongly suggests/cautions to go over all of the Vitamin D regimen with a doctor.
  8. Like
  9. Like
    Brain on fire reacted to devonrex in Chronic Cluster Patient Pain Free for 11 days   
    Sorry, if I came across harshly. I was only offering some other information on a keto diet, it is a form of ketoacidosis, being in a state of ketosis and not recommended in the long term, because of the effects it has on the body, for an episodic, who could use it to mitigate their period, would be ideal in my mind, but long term effects have issues up to and including heart damage from the studies I have read since replying. I was only adding caution, before someone jumped on this because we all want something to work for these fucking things.
    As to the whole 'attack' angle. Someone got offended when they got called lame after calling another lame then saying the initial thing was said badly after responding badly, pretty sure there is enough blame to go around for bad manners. On my part, I apologize.
    Also my user name is in reference to my cat, a Devon Rex, who is the only thing that has been able to calm me or even get a smile during high number attacks, simply because she is happiness you can cuddle and so damn empathic her skin crawls if my hand comes near her when I am mid attack, but she will still come to be near me. Because of this I can occasionally, 'set aside' the pain for her sake. Its...disassociation, something something, but it can give me an eye in the hurricane of the pain for a few moments.
  10. Like
    Brain on fire reacted to FunTimes in D3 clarification help   
    you will want to take all the other vitamins on Batch's regimen along with the D3. You will also want to get a blood test done to see what your levels are now. 
  11. Thanks
    Brain on fire reacted to FunTimes in 2019 Patient Conference   
    Any update on anything? Scholarships? list of speakers? 
  12. Like
    Brain on fire reacted to Dallas Denny in Make this site as accessible as possible. :)   
    G'evenin ya'll!
    Many good points here!
    As Chf stated, much has changed in the years since we both became involved with clusterbusters.......all of the information in the busting files is based on the anecdotal evidence and surveys from the first few years.....and we've now added another 10 years of folks experience and anecdotal evidence with no new surveys or significant rewrites to the original information.
    I've spent many, many hours cleaning up the corruption caused to the numbered buster files by the migration from the original yabb powdered board....however, it's not possible to pin them in numerical order so I've pinned just the "Clusterbusters Files Content" page with current links to the numbered files.
    I'm also going to meet with Bob W at the conference to discuss updates and changes to the board along with staffing..... I ain't no sprang chicken, Spiny is recovering from surgery,  we've completely lost bejeebers,  Jeff (That hurts my head) isn't here as much as in years past, and everytime I talk to Bob W he's headed to another conference or presentation on our behalf so we are rarely graced with his presence.
     At any rate, please continue with suggestions in this thread and I'll use it for notes when Bob and I meet up.
  13. Like
    Brain on fire reacted to CHfather in Make this site as accessible as possible. :)   
    You, spiny,  THMH, and Jeebs could never lift another finger here and your contributions would still be immeasurable.  I know that's not the subject here,. I just wanted to say it.
  14. Like
    Brain on fire got a reaction from Rod H in If you are new, here are some tips   
    If you aren't a member you can use the magnifier top right to search for answers in the General & Open Forums (no login is required). Members can do the same for answers in all forums. Items with a 'pin' in the top left contain important information. Please read them, there are many items there to assist you. 
  15. Like
    Brain on fire got a reaction from Rod H in CH vs Migraine headache --from someone who has both.   
    There it is, hope this helps. If you go to the cluster buster files section you will see a post titled 'A bunch of basic non-busting info'. There you will find what you need to know about docs, tests, proper diagnosis, treatments etc. As I noted above self diagnosis is risky business.
    Much can go wrong in our brains that cause head pain/headaches & no symptoms should be taken lightly. There are different Hemicranias, for info on them, the types of migraines & types of cluster headaches etc. You can do a web search (e.g. Google).
     Best wishes on your reading searches etc. If you have questions afterwards ask away.
    I apologize for it taking so long to get back to you, our lives are sometimes about making it through each day, one foot in front of the other.
  16. Like
    Brain on fire reacted to xBoss in Make this site as accessible as possible. :)   
    The problem with any forum is that you can answer the same question 100 times in 100 different ways and new people will still show up and ask it again without even 30 seconds of research. It's not like we are selling widgets here, this is important stuff for a rare group of people. Anybody in bad shape needs to invest the time.
    After 17 years of owning and running forums I have found that about 50% of forum users are helpful and the other 50% wants all info handed over to them on a silver platter.
  17. Thanks
    Brain on fire reacted to CHfather in Work and CH   
    there are stands, too, that hold multiple tanks.  
    and i'm gonna say with great confidence that a full m-size welding tank (let's say 120 cu ft) weighs a whole lot more than 32 pounds.  more like twice that, i'd bet.  here's info for a 40 cu ft empty welding tank (30 lbs):  https://www.amazon.com/Steel-Oxygen-Cylinder-CGA540-Valve/dp/B01E2T4V2W/ref=pd_sbs_469_22?_encoding=UTF8&pd_rd_i=B01E2T4V2W&pd_rd_r=ead8bfb9-6d2d-11e9-a9d7-63c732323a12&pd_rd_w=omtpf&pd_rd_wg=f455F&pf_rd_p=588939de-d3f8-42f1-a3d8-d556eae5797d&pf_rd_r=5RY00T8K50PYV2B5MX1S&psc=1&refRID=5RY00T8K50PYV2B5MX1S#productDetails
  18. Like
    Brain on fire reacted to Rod H in “Cure”   
    This is really going south quick. Maybe laughter is the "cure"???
  19. Haha
    Brain on fire reacted to Rod H in “Cure”   
    Don't worry guys I'm not a quitter. But my vision is really starting to go.
  20. Haha
    Brain on fire reacted to CHfather in “Cure”   
    Reminds me of Woody Allen's joke, "Sex isn't dirty, unless you're doing it right."
    As I recall, one or two posters have suggested that not actually completing the act is the secret to stopping an attack.  So actually doing it "wrong" might in fact be the secret to doing it "right."  (This might also be within the posted materials, but I'm not going to look.) 
  21. Haha
    Brain on fire reacted to Rod H in “Cure”   
    I had high hopes for masturbation. I must be doing it wrong.
  22. Like
    Brain on fire reacted to Freud in “Cure”   
    I have thoroughly enjoyed the convo this started...
  23. Like
    Brain on fire reacted to CHfather in First time posting   
    There are some threads here about Emgality.  Put it in the search bar (top right of the page) and you'll see them.  Emgality is only expected to work for people with episodic CH, not chronic, but from your description, you might not meet the specific definition of chronic.
    It's not likely that O2 ended your cycle.  Doesn't really do that (but since CH is pretty different for everyone, I wouldn't state that as a certainty).  
    Check out the D3 regimen; it has helped hundreds: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 
  24. Like
    Brain on fire reacted to CHfather in “Cure”   
    Thanks to LazyGrind, we can now add pooping to the list of "treatments," if not cures.  Like you say, j'c', who knows (except that many of them have been tried, with mixed success). 
  25. Like
    Brain on fire reacted to Freud in “Cure”   
    It’s real interesting what comes up if you search “cure” Click here 26 pages!  I only got through the first few but it’s real interesting.