All Activity
This stream auto-updates
- Today
-
40 lpm is a really quick breath, if you want to use positive pressure by pressing the button, it’s not too much pressure, 160 at full pressure is overwhelming, no reason to pay extra for added pressure you won’t use
- Yesterday
-
Tanya Davila joined the community
-
I have been on a steady dose of Verapamil 80mg 3 times a day....which oddly enough have helped keep the CH at bay for the most part. I still get migraines that I take a monthly Emgality shot for. Dr. Also has me on Venlafaxine. I just recently upped my verapamil dose to 120 mg morning and night at 80mg in afternoon. The past couple days I have been soooo tired. Has anyone noticed verapamil making them sleepy?
-
Cannabeme joined the community
-
-
- Last week
-
Hi, Unfortunately I've not been able to isolate that kind of correlation. But, I do routinely have 300-500 headaches, migraines and clusters a year. Thankfully, busting is good for migraines too, btw. I was once in day 2 of a week long migraine when I got a really bad cluster headache. I think the cluster scared the migraine away, because afterwards I was utterly pain free for about 2 hours. Then the migraine returned. Mox
-
Hey 4Runner, Let me offer a different perspective. I'm a chronic cluster head and have had them year round since they started in Jan 2007. That said, the last few years they have been incredibly mild, short and rare. 1-2 a month that might reach KIP 2 or 3. This is largely... who am I kidding... this is ENTIRELY down to an aggressive busting regimen that I started back when they were really bad (2-5 attacks a day, every 2-3 days with each attack lasting 1-3 hours, for a year). Thankfully, alcohol isn't a trigger for me because I sometimes - rarely, but sometimes - use it to terminate a migraine as I am also a chronic migraine sufferer. Last year I was getting 25+ a month on a regular basis. Thankfully, most were short and treatable with triptans. But, 2-3 times a year I'll get a migraine that lasts 3+ days and triptans have no effect. When I reach day 3 and nothing has worked to alleviate the pain, I turn to vodka. I am sure to get only the good stuff. Russian Standard is my go to, but Absolut Vodka and Smirnoff are OK too. The better quality of vodka the less likely you are to have a hangover. Don't buy cheap vodka, it's a waste of money. I sit down with a shot glass and a chaser - used to be coke when I drank coke, now will be lemonade, or ice tea or pineapple juice or something. I will proceed to drink 9-12 shots of vodka over the course of an hour or so. The trick to avoid a hangover is to have 1-2 large glasses of water before bed. Hangovers are the result of the body getting dehydrated because of the alcohol, and your blood vessels shrink, and they hurt when they shrink. Once you have a hangover, it's too late. You have to suffer through it. But, if you preempt it by loading your body up with water before you go to bed, then you don't get dehydrated during the night. No hangover. I haven't had a hangover in 12 years. Some people take Anadin, Paracetamol or Asprin with the 2 glasses of water, but I found it wasn't necessary. I'll usually still have the migraine when I go to bed, but will wake up absolutely fine the next morning. On those very rare occasions when I'm out drinking with friends, I always order a pint of water with my last round, and then have another pint of water when I get home. The last time I drank a lot was several years ago in Scotland at a wedding reception for my best friend. I was doing shots of vodka with Vodka & Coke chasers, and I stopped counting somewhere around 12 or 13. There are chunks of the night that I don't remember. But, I had a glass of water with my last round and another when I got to the hotel. I got up about 7:30 the next morning, had breakfast with friends then got my camera and when shooting around the Scottish countryside for a few hours before the drive home. Not bragging, just saying the water thing works. An English Breakfast is a great way to reload the body with nutrients the next day. I typically have Bacon, Eggs, Sausage, hash browns and toast. Not quite a Full English, but it does the trick. Regardless, get plenty of protein in you the next morning. I told both my GP and my Neurologist about this method back when I as routinely having migraines that lasted 2 - 7 days. They both advised that I only use it as a last resort as my body will build up a tolerance, and I'll need more and more alcohol in order to reach pain free status. I took their advice, and only use it when nothing else works. Thankfully, I don't have to do it that often any more, and I rarely drink otherwise. Although, I normally keep a bottle, or 1/2 bottle of vodka in the freezer, just in case I need it. I understand the points the other posters made, and I'm not here to promote alcohol consumption. But, if it works, don't knock it. If it buys you a good night's sleep and a day or two pain free, go for it. Just find the best way to do it, use caution and be smart about it. And, when the pain is gone, leave the alcohol alone. You don't want to build up a tolerance for it. I hope my tips help reduce the hangover. Mox
-
Why?
-
yes I have also realized and mention the affects of alcohol on not only triggering but blocking cluster headache's. but the underlined question here is what if any chemicals are at work with the body to produce this blocking affect. can they be artificially produced? it just seems to me its an avenue to venture down. 4 month PF. loving the time away.
-
Here's a good listing: https://www.ebay.com/itm/Allied-Healthcare-Demand-Resuscitator-Valve/173791497315?_trkparms=aid%3D555018%26algo%3DPL.SIM%26ao%3D2%26asc%3D20160908110712%26meid%3Ddcd3aa58f668478185fd35fa8c4ed705%26pid%3D100677%26rk%3D1%26rkt%3D30%26mehot%3Dnone%26sd%3D192499863285%26itm%3D173791497315%26pmt%3D1%26noa%3D0%26pg%3D2386202%26algv%3DSimplAMLv5PairwiseWeb&_trksid=p2386202.c100677.m4598 Make sure you get the 40 lpm one, not the 160 lpm - you can get it with or without the hose, if you ant a really long hose, I suppose you can get it separately
-
Brain on Fire -- AVN (Avascular Necrosis) is a constant conversation with my neuro, as over the years, I have done many steroid tapers. Thank you for the reminder.
-
I found it on ebay -- but I don't think you'd need a prescription -- heres one on ebay right now: https://www.ebay.com/i/192499863285?chn=ps&norover=1&mkevt=1&mkrid=711-117182-37290-0&mkcid=2&itemid=192499863285&targetid=872074354682&device=c&mktype=pla&googleloc=9009566&poi=&campaignid=9338046419&mkgroupid=103102861148&rlsatarget=pla-872074354682&abcId=1139336&merchantid=112179476&gclid=EAIaIQobChMI4PjvjLzq5wIVCRgMCh0w4wQWEAkYASABEgKwwfD_BwE In fact, there's a bunch on ebay if you just search demand valve --
-
I definitely see some sort of link between CH and migraines. I grew up suffering migraines in my teens and twenties, then when clusters came on (when I hit 30) the migraines stopped. A couple of years ago I started busting and had no CH for 2 years, but did have a few migraines. Aside from noticing that, I'm afraid I hit a dead end when wondering what to do with that information.
-
-
Elliot joined the community
-
As a rule I agree with my mother: "alcohol is no ones friend" The use of alcohol while in cycle is likely to make it worse overall. This is a pretty well described pattern in cluster headaches. You can try and nuance it with histamine this and sleep that but unless you are the exception alcohol in cycle will potentiate things either by triggering an attack, potentiating a cycle or making the headaches worse. Like LSD is LSD alcohol is still alcohol. The stuff that makes each spirit unique may mitigate things a bit but if you choose to drink while in cycle for whatever the reason ou will have to accept the consequences. Its not fair but it is the way it is.
-
-
-
First of all, my advice for everybody is to avoid alcohol completely in life in general and especially in treating clusters, no matter what you can achieve using it treatment wise. Personally, younger drinking too much, to the point of passing out provided me with a "shield" - a time period inside which cluster attacks did not happen. I drank more and more and during years this time period got shorter to the point when alcohol did not build this shield at all anymore. And I had a huge alcohol problem. Back then I used to think it lessened my attacks, I don't anymore - I think I got them back in spades later on. I have chatted with quite a few (usually male) clusterheads over the years who use alcohol for this shielding effect. I believe in the point when this is happening everyone is still quite manageable episodic. I don't want to encourage anyone to try or use it because there are healthier alternatives, for the brain and for life and people around us. But it's an interesting phenomenon which should be looked at that might help us understand clusters better and get us closer to finding the "cure". The other side of the coin; guys who have stopped using alcohol altogether at some point of their lives and have decades to look at cluster-wise usually notice there is some kind of correlation with no alcohol (different mind set) - no clusters (severe cycles).
-
I am an episodic suffered for over 15 years. Recent cycle has been ongoing 2+ months, which is longer than usual. Attacks are more frequent as well, 1-2/daytime and between 3-6/night time. Oxygen works as always, but sleep is very disturbed. Unfortunately, busting this time around has not proved beneficial and no relief from the D3 regimen either. In years past I would find that alcohol would bring on a headache, but continuing to drink and "get drunk," they would subside for the evening and I could get a full nights sleep. Also, found that I might even get a couple nights of attack free seep following an evening of acute alcohol intoxication. I usually just avoided alcohol and the cluster never lasted much longer than a month so never put much thought in to it. With the new cycle, I avoid alcohol as usual; however, on a couple occasions I have sat down in the evening and drank vodka and Monster energy until it put me to sleep - as I had read about how wine/beer is higher in histamine levels and can bring on attack quicker than a drink of vodka/gin. I sleep the night without an attack. The next day is kind of rough as I have a bit of a hangover and I have a constant pain behind my eye where the attacks always occur - but it never materializes into an attack. Thing is, the next 1-2 nights following, I am attack free. Then a night with mild attacks until they are back to baseline attacks during my cluster. I have looked into the effects of alcohol intoxication on increase/decrease levels of prolactin and cortisol as they relate to blood pressure etc. and effects the intoxication has on the hypothalamus. I even brought up the fact of intoxication and a couple attack free nights with my neurologist - but he didn't seem to want to promote getting drunk to periodically lessen attacks or the relationship of the two, if any, - which is understandable. Sorry for the long post, just wanted to see if anyone had any input on the issue or had any similar experiences. Jay.
-
4Runner joined the community
-
Food for thought, though research for this isn't possible. How many MDs assume treatment for ch works or ch goes away because patients don't return? How many patients who have side-effects caused by medications or supplements report them to their MDs? How many patients report them to the FDA? How many patients don't recognize side-effects? Keep in mind supplements are not regulated by the FDA. More than one labeled USP (indicating pharmaceutical grade), has been tested & failed to meet the ingredients etc on the label.
-
First - The good news FOR IMMEDIATE RELEASE Orthomolecular Medicine News Service, Feb 21, 2020 Three Intravenous Vitamin C Research Studies Approved for Treating COVID-19 by Andrew W. Saul, Editor (OMNS February 21, 2020) Intravenous vitamin C is already being employed in China against COVID-19 coronavirus. I am receiving regular updates because I am part of the Medical and Scientific Advisory Board to the International Intravenous Vitamin C China Epidemic Medical Support Team. Its director is Richard Z. Cheng, MD, PhD; associate director is Hong Zhang, PhD. Among other team members are Qi Chen, PhD (Associate Professor, Kansas University Medical School); Jeanne Drisko, MD (Professor, University of Kansas Medical School); Thomas E. Levy, MD, JD; and Atsuo Yanagisawa, MD, PhD. (Professor, Kyorin University, Tokyo). To read the treatment protocol information in English: http://orthomolecular.org/resources/omns/v16n07.shtml (Protocol in Chinese at http://www.doctoryourself.com/Coronavirus_Chinese_IV_C_Protocol.pdf Direct report from China OMNS Chinese edition editor Dr. Richard Cheng is reporting from China about the first approved study of 12,000 to 24,000 mg/day of vitamin C by IV. The doctor also specifically calls for immediate use of vitamin C for prevention of coronavirus (COVID-19). https://www.youtube.com/watch?v=TC0SO9KDG7U A second clinical trial of intravenous vitamin C was announced in China on Feb. 13th. In this second study, says Dr. Cheng, "They plan to give 6,000 mg/day and 12,000 mg/day per day for moderate and severe cases. We are also communicating with other hospitals about starting more intravenous vitamin C clinical studies. We would like to see oral vitamin C included in these studies, as the oral forms can be applied to more patients and at home." Additional information at http://orthomolecular.org/resources/omns/v16n11.shtml And on Feb 21, 2020, announcement has been made of a third research trial now approved for intravenous vitamin C for COVID-19. https://www.youtube.com/watch?v=VMDX0RSDp1k&feature=youtu.be News of vitamin C research for COVID-19 is being actively suppressed Anyone saying that vitamin therapy can stop coronavirus is already being labeled as "promoting false information" and promulgating "fake news." Even the sharing of verifiable news, and direct quotes from credentialed medical professionals, is being restricted or blocked on social media. You can see sequential examples of this phenomenon at my Facebook page https://www.facebook.com/themegavitaminman . Indeed, the World Health Organization (WHO) has, literally, met with Google and Facebook and other media giants to stop the spread of what they declare to be wrong information. https://www.cnbc.com/amp/2020/02/14/facebook-google-amazon-met-with-who-to-talk-coronavirus-misinformation.html?__twitter_impression=true Physician-directed, hospital-based administration of intravenous vitamin C has been marginalized or discredited. Scientific debate over COVID-19 appears to not be allowed. Ironically, Facebook, blocking any significant users' sharing of the news of approved vitamin therapy research, is itself blocked in China by the Chinese government. As for the internet, yes, China has it. And yes, it is censored. But, significantly, the Chinese government has not blocked this real news on how intravenous vitamin C will save lives in the COVID-19 epidemic. Here is the protocol as published in Chinese: http://orthomolecular.org/resources/omns/v16n11-chi.shtml Medical orthodoxy obsessively focuses on searching for a vaccine and/or drug for coronavirus (COVID-19). While they are looking for what would be fabulously profitable approaches, we have with vitamin C an existing, plausible, clinically demonstrated method to treat what coronavirus patients die from: severe acute respiratory syndrome, or pneumonia. And it is available right now. To read all Orthomolecular Medicine News Service Reports on COVID coronavirus and intravenous vitamin C: Vol. 16, No. 04 January 26, 2020 Vitamin C Protects Against Coronavirus Vol. 16, No. 06 January 30, 2020 Nutritional Treatment of Coronavirus Vol. 16, No. 07 February 2, 2020 Hospital-based Intravenous Vitamin C Treatment for Coronavirus and Related Illnesses Vol. 16, No. 09 February 10, 2020 VITAMIN C AND ITS APPLICATION TO THE TREATMENT OF nCoV CORONAVIRUS: How Vitamin C Reduces Severity and Deaths from Serious Viral Respiratory Diseases Vol. 16, No. 10 February 13, 2020 Coronavirus Patients in China to be Treated with High-Dose Vitamin C Vol. 16, No. 11 February 16, 2020 Early Large Dose Intravenous Vitamin C is the Treatment of Choice for 2019-nCov Pneumonia Now for the Disturbing News. I was up most of last night reading through hundreds of papers about the 2019 Coronavirus (now renamed by the WHO as "COVID-19") published in the medRxiv website I posted about earlier and on Research Gate, a website I've been a member of for several years researching vitamin D3 and its role in preventing CH and MH. As most of you know, I'm a 75-year-old retired Navy fighter pilot so clearly not a virologist or epidemiologist. That said, I do read and comprehend a great deal of medical related information so here is my take-away in the following: There are three papers that say Wuhan scientists took the North Carolina SARS with gain of function, which is already a biological warfare weapon, and they took the technology here behind this well-developed SARS HIV weapon and they all brought it back to the Wuhan a BSL-4 and tried to DNA genetically engineer it into a chimera, into a biological warfare weapon involving the coronavirus (now COVID-19), the HIV virus and gain of function. The theory is one of the idiot scientists at the BSL-4 lab in Wuhan became infected with the COVID-19 but didn't realize it and went about daily activities in the Wuhan area including the fish market shedding virus wherever he went and that's what has lead us to where we are today. BSL-4 = Biosafety Level-4 = A facility with the highest level of biosafety precautions, and is appropriate for work with agents that could easily be aerosol-transmitted within the laboratory and cause severe to fatal disease in humans for which there are no available vaccines or treatments. Gain of Function = Weaponize. Chimera = A fire breathing creature composed of the parts of more than one animal. Real bad news as a chimeric virus is made up from the worst parts of two or more deadly virus. Above comments in bold by Professor Dr. Francis A. Boyle, a leading expert in international law; responsible for drafting the Biological Weapons Anti-terrorism Act of 89, which was adopted into world law and the American-implementing legislation for the biological weapons convention. One paper reported analyzing the COVID-19 genome and found it has a 98.94 percent identity with SARS-Coronavirus with additional genetic sequences (from one or more other virus) which would tend to support the assertion this is a chimeric virus. Another paper estimated he R0 at 3.5, much higher than the WHO estimates. The R0 or R nought or R zero of an infection can be though of as the expected number of cases directly generated by one case in a population where all the individuals are susceptible to infection. Still another paper concluded "the COVID-19 epidemic doubling time was analyzed by Chinese province (January 20 - February 9, 2020). The overall mean doubling time ranges from 1.3 to 3.4 days for Hubei" (the province with Wuhan). Other papers say the incubation period from exposure to symptoms for COVID-19 is ≤ 4 days and that the infection runs in two phases 10 days apart. In other words, a COVID-19 sufferer can appear to be well with no virus found and released from the hospital/quarantine. 10 days later the second phase starts making them a super shedding spreader of the COVID-19 virus. People at greatest risk are infants, the aged and anyone with a weakened immune system. ------------------------- My Comments------------------------ At this point I am not running around with my hair on fire over all this, but I remain vigilant. I don't have enough hair on the top of my head to worry about fire... The stash... well that's another matter. I'm confident the anti-inflammatory regimen my wife, family and I have been taking since October of 2010 with 10,000 IU/day vitamin D3 and the cofactors has our immune systems running at peak performance. We've had no flu in the 9+ years we've been taking it and the colds that do hit, run at a frequency of less than one a year, are mild and short lived. We also take 2 to 4 grams of liposomal vitamin C/day. Take care, V/R, Batch
-
Promethalus joined the community
-
Smarty!!!
-
@igdc hey! This is interesting. I had the same situation. There were days where I didn’t have any ch type pain behind my eye (usual) but I had a migraine so bad I couldn’t even move my head. I’m not sure if it was an actual migraine or just an all over headache from all the meds I was trying. kat
-
mxyptlyk joined the community
-
For those of you who also have chronic migraine, do you find that your migraines get worse and/or more frequent during a CH cycle? I seem to be tapering down from my CH cycle, and it occurred to me that I've had fewer migraines (more like my normal number) in the last month. I asked my doctor and she said that her patients with both often see an increase in the migraines during a CH cycle. While miserable for us the oh-so-lucky ones, that's kinda interesting. Curious if others here have experienced the same, and if you've seen anything that explains that. Thanks.
-
.....fixed it for you..........................
-
This recommended doctor list is old, and there's nothing specifically listed for Dayton, but you could check in the Ohio section: https://clusterbusters.org/wp-content/uploads/2014/10/OUCH-DOCS-US-07-22-14-NC-OR.pdf I know THE Ohio State University has a headache clinic.
-
Any King readers in this forum ? I know he has often stated having migraines but just about always I read a headache description in his books these days clusters come to mind. Anyone have similiar thoughts ? Should he not have heard of clusters would not be unheard of.
-
For 2019, the 30-day efficacy jumped to over 90% of CHers starting this regimen experiencing a significant reduction in CH frequency from a mean of 21 CH/week down to a mean of 4 CH/week. Better yet, over 65% of CHers starting this regimen experienced a lasting cessation of CH in the first 30 days. I attribute this increase in efficacy to the switch to the Bio-Tech D3-50 50,000 IU water soluble vitamin D3. That's the only thing that's changed since July of 2018. I know the medical evidence purists will say an open label observational study rates a low level of medical evidence. To that I say, this is not your every-day average observational study. It's been running for over 8 years with over 320 participants and the year-over-year 30-day efficacy has remained constant at ≥80% for a favorable response and ≥50% for a lasting complete cessation of CH in the first 30 days. Moreover the generalizability of these results is very good as participants have come from 35 different countries around the world. That's not to mention all the health benefits made possible by the anti-inflammatory regimen at a cost of ~ 50 cents/day or $15/month USD. The Emgality cost is $550/month and it carries some onerous adverse side effects. Bottom line... The Anti-CGRP mAbs are never going to work as they cannot pass through the blood brain barrier to reach the site of action in neuronal nuclei within the trigeminal ganglia where CGRP is expressed. At best all the Anti-CGRP mAbs can do in lower the CGRP serum concentration. Here's the math and molecular biology behind this statement. These mAbs have a molecular mass of 150 kDa (150,000 Daltons) but the fenestration (windows) through the BBB have a maximum aperture of 400 Da. That makes the monoclonal antibodies 375 time too big to pass through the BBB windows. A molecule of vitamin D3 has a molecular mass of 385 Da so it passes readily through the BBB and into neuronal nuclei to do its thing through genetic expression to down-regulate (decrease) the expression of CGRP, SP, VIP and PACAP. The Anti-CGRP mAbs only react to CGRP.
-
Hi Everyone Just wanted to see if anyone had a recommendation for a neurologist in the Dayton Ohio area. Thanks. Appreciate any good or bad experiences
-
-
I guess we kind of knew this, but it's still sad to me to see it confirmed. https://www.docguide.com/phase-3-randomized-placebo-controlled-study-galcanezumab-patients-chronic-cluster-headache-results-3?tsid=5 Phase 3 randomized, placebo-controlled study of galcanezumab in patients with chronic cluster headache: Results from 3-month double-blind treatment; Dodick D, Goadsby P, Lucas C, Jensen R, Bardos J, Martinez J, Zhou C, Aurora S, Yang J, Conley R, Oakes T; Cephalalgia 333102420905321 (Feb 2020) OBJECTIVE To report efficacy and safety of galcanezumab in adults with chronic cluster headache. BACKGROUND Galcanezumab is a humanized monoclonal antibody that binds to calcitonin gene-related peptide and inhibits its biological activity. METHODS This study comprised a prospective baseline period, a 12-week double-blind, placebo-controlled treatment period, and a 52-week open-label period. Up to six protocol-specified concomitant preventive medications were allowed if patients were on a stable dose for 2 months prior to the prospective baseline period. Patients were randomized 1:1 to monthly subcutaneous galcanezumab (300 mg) or placebo. The primary endpoint was overall mean change from baseline in weekly attack frequency with galcanezumab compared to placebo. Key secondary endpoints were ≥50% response rate and percentage of patients meeting sustained response. Results from the double-blind treatment period are reported. RESULTS A total of 237 patients were randomized and treated (120 placebo; 117 galcanezumab). At baseline, the mean age was 45 years and 63% were using ≥1 preventive drug. The primary endpoint was not met; mean change in weekly attack frequency was -4.6 placebo versus -5.4 galcanezumab ( p = 0.334). Key secondary endpoints also were not met. Injection site-related treatment-emergent adverse events were more common in the galcanezumab than the placebo group, with significantly more injection site erythema. CONCLUSION Treatment with galcanezumab 300 mg did not achieve its primary and key secondary endpoints. This study underscores the potential distinct biology of cCH as well as the significant unmet need for safe, effective, and well-tolerated preventive treatment. The safety profile of galcanezumab in cCH is consistent with that observed in trials of episodic CH and migraine.
-
If you're interested in reading some fascinating studies about the 2019 Coronavirus outbreak, see the following link to medRxiv. This is a preprint server for health sciences. These study results are published within 2 days of submission where acceptance and publishing by the traditional medical journal can take an average of two months or longer. These reports carry the following caveat: Caution: Preprints are preliminary reports of work that have not been peer-reviewed. They should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information. https://www.medrxiv.org/search/2019%2BCoronavirus%2BnCoV numresults%3A10 sort%3Apublication-date direction%3Adescending I've done a cursory review of these studies and came up with the following: Fatalities from the 2019 coronavirus appear to occur most prominently in people of Asian extraction. [Comment: This makes sense as the CDC now warns travelers about “community spread” in six nations: Japan, Singapore, South Korea, Taiwan, Thailand and Vietnam.] Fatalities appear to occur most prominently in people over age 50 Leading cause of death from the 2019 coronavirus is pneumonia (acute respiratory syndrome coronavirus) [Comment: Pneumonia successfully treated with high dose Vitamin C infusion] Patients with coronavirus infections tend to have weak immune systems T cells play a critical role in antiviral immunity and patients with the coronavirus infection have low CD4+ and CD8+ T-lymphocyte (T-Cell) counts. [Comment: Vitamin D3 plus cofactors can help build a strong immune system] One study concluded "Our analysis reveals that eosinopenia (too few eosinophil white blood cells) may be a potentially more reliable laboratory predictor for SARS-CoV-2 infection than leukocyte counts and lymphopenia recommended by current guidelines."
