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My best friend has started Vitamin-rich food rather than taking Vitamins D3 regarding this. He used to eat vitamins 3d rich food such as Salmon, Herring and sardines, Cod liver oil and Canned tuna
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Thank you. As I mentioned rebound congestion is an issue, and I cannot rule out the possibility of rebound headaches. I have been prescribed a weak steroid nasal spray to combat rebound congestion. My theory has long been that its success was due to opening up airways, increasing the body efficiency to intake oxygen, maybe it is just that simple. Its action on serotonin receptors is a new discovery to me and though it was an interesting link. Obviously, prevention is key to minimize the need for oxymetazoline. My main focus now is to find a reliable preventative that works for me. My strategy will be reducing mucus production and inflammation of nasal mucosa. Thinking vit D and magnesium to start. I am also a chronic sufferer and will be exploring the small possibility that I have a fungal sinus infection that exacerbates my condition. This can be ruled out by taking fulconazole.
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I think I caught the beast before it caught me
Brain on fire replied to Dana129's topic in General Board
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OTC Nasal sprays can cause significant local blood vessel constriction. The central effects are less known. The serotonin receptor engagement is mostly described in the lab and the extent in the human is less clear. If it works thats great but use caution because it is very easy for your nose to get habituated to the spray and you have to use it all the time to breath easily
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Been having a look into some of the prevention methods being used on here. The use of Vit D, magnesium and keto diets all seem to have reasonably high success. I mentioned in an earlier post that after I use oxymetazoline I can always pull a ridiculous amount of mucus from my sinus cavity and nasal passages and this eases the pain of my attack. After some reading online I have discovered that Vit D deficiency is linked with chronic sinusitis, magnesium is used to reduce mucus in CF patients, and the body requires carbohydrates to produce mucus so a keto diet will inevitably reduce mucus production. Could be a coincidence. Just thought this was interesting.
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Dana, I am mostly pain free thanks to the D3 Regimen! It is awesome that vitamins can do what opioids cannot.
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Hey Dana, Thanks for the feedback. I'm happy to hear you're CH pain free and feeling good. Are you taking the Bio-Tech D3-50 form of vitamin D3? After over 9 years working with both episodic and chronic CHers taking this regimen of vitamin D3 and cofactors daily, nearly all episodic CHers who stay on this regimen year round report they sail through their usual episodic cycles CH pain free. Take care and please keep us posted. V/R, Batch
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Well, after obtaining my supplements before the headaches surfaced I wasted no time doing the loading dose, my last shadow was on the 26th of December, since then, I was PF with the use of energy drinks, and now, I have my supplements, and am starting to feel good, going to be staying away from alcohol for a bit
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Indomethacin is a powerful non steroidal, sort of a super ibuprofen, which is generally taken in a short course. It is also used by knowledgeable headache experts to distinguish between cluster headaches and another trigeminal autonomic cephalgia (TAC) called hemicranium continuum. Cephalgia is a fancy name for headache. Para tabs are tylenol (acetaminophen). Dymista is a combination of steroid and antihistamine for nasal inhalation. Sirdalud is an alpha-2 receptor blocker that can be used to treat muscle spasms. I do not think any of these medications alone would interfere with a bust. When you throw a whole bunch of supplements and medications into the mix unpredictable things can happen. Thoughtful use and proper preparation will handle most adverse side effects. As a rule its best to reduce expose by limiting non essential medications.. Once her pulmonary health is stable I believe she can consider busting with a certain degree of confidence. Again, the concern with any non traditional intervention is the unfamiliarity with the experience and potential overreaction to symptoms while in the midst of a psychedelic experience. The best way to combat or avoid this is by proper preparation by the individual and their sitter. It can not be emphasized enough the importance of proper set and setting with these molecules. Of course one does not need a full blown psychedelic experience to benefit cluster headaches in many cases. It is best to be prepared in case the individual gets more than they bargained for with a treatment. Since things like MM are very variable in content of active ingredient a person might find themselves further out there than intended. You are a good soul and friend to translate and help others, it is not an easy task.
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She is currently having a respiratory infection on top of her asthma so it's probably wise to wait to recover from that. She just sent me rest of the meds and supplements she is on: - Indomethacin - Para tabs (paracetamol) - Dymista nasal spray - Sirdalud - relaxant - Ferrodan (iron) + lactoferrin
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Thank you so much Pebblesthecorgi I will translate your excellent post here in finnish so the lady in question is able to read it in her own language, and does not have to use the Google translate that usually does not do very good job with finnish. (in purple) Esittelet tässä merkittävän listan reseptilääkkeitä joita käytetään yleensä huomattavan hengitystiesairauden (tai keuhkoahtauman) hoidossa. Astmalääkkeet ovat yleensä avaavia tai hengitettäviä steroideja (kortisoni) tai näiden kahden sekoituksia. Medrol on steroidi (aika lailla samaa luokkaa prednisonen kanssa vahvuudessa) jota luultavasti käytetään johonkin keuhkoihin liittyvään. Zolt on protonipumpun estäjä jota käytetään närästyksen hoidossa. Sitä käytetään yleensä lyhyissä jaksoissa, se ei vaikuta heti mutta sitä ei tulisi käyttää myöskään jatkuvasti. Betasalpaajaa määrätään yleensä kohonneen verenpaineen hoitoon mutta sitä voidaan käyttää myös migreenin hoidossa tai sydänsairauden hoidossa. Estrogeenivalmisteita käytetään sisäisesti ja niillä on hyvin vähän vaikutusta kun niitä käytetään 6-12 viikkoa. Joten jos uskot ajatukseen että steroidit voivat olla blokkaavia tekijöitä niin silloin tässä jonkinasteisia huolenaiheita ovat Medrol ja jotkin hengitettävistä lääkkeistä. Avaavat lääkkeet voivat aiheuttaa ahdistusta ja nostaa sykettä mutta niiden ei pitäisi blokata (estää vaikutusta). En usko että protonipumpun estäjä on ongelma. Estrogeeni voi vaikuttaa lääkkeiden metaboliaan maksassa, mutta sisäisesti käytettävät estrogeeniannokset ovat niin pieniä että niillä ei pitäisi olla roolia tässä. Betasalpaajat on mainittu joskus blokkaavina mutta en usko että ne ovat oikea huolenaihe myöskään. Tämä on sellaisen henkilön lääkelista, jolla on huomattavia terveyshuolia. En suosittelisi lopettamaan mitään säännöllisessä käytössä olevia lääkkeitä ilman lääkärin tarkkaa valvontaa. Jos hän on käyttänyt steroideja kauan, niillä on oma merkitys myös psyykkisen stressin sietämisessä eikä niistä irroittautuminen ole käytännöllistä. Hänen täytyy ola hyvin valmistautunut ahdistukseen jota voi liittyä bustaamiskokemukseen ja "vahti" joka on hänen kanssaan ja ymmärtää mahdollista hengittämispuolta. Loppujen lopuksi se on hänen päätös mutta suosittele hellästi. Huomattavaa varovaisuutta ja huolenpitoa täytyy harjoittaa.
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The fact that your Doctor "gets it" is definitely a plus.. I have brought in literature and such, and mine has next to no clue what a CH REALLY is.. the only place I had luck with several years ago, was a "sleep deprivation" (spelling?) institute that took my Rx with no problems at all, they went out of business and I have had no luck trying to get the medical o2... thats when I went through these message boards to look into the welding setup which a lot of people use. GOOD LUCK !!!
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i am thinking im going to have the same problem. we asked my nurse pratictioner, and old highschool buddy to perscribe o2 for my clusters. ive never been" medically dignosed" but all the research,pain, cluster season periods, i know that i have them. always have been self pay, no insurance. when they started 9ish yrs ago, i was misaerble every night,around 7 to 8 at night for 3 months then gone. this continued every year until 3 years ago. my dad is on o2 for copd and he loaned me tanks,got a regulator that goes to 15lpm max and non rebreather we ordered then self medicaded with phcillibian, and after 3 doses went into remission until now. showed up 4weeks ago and are way more intense. since my last cycle, we recently moved away. we are a 1hr and half away from any decent size city for 02. and 3 hrs awayto borrow dads small tanks that i go through one tank in 30 minutes and most of time the headache isnt gone. so anyways, texted dr, explained my condiiton, sent him links of info. because he was worried about o2 toxiticy, he then wrote me a script for o2, on script it says, for cluster headaches, 15lpm for 30 min intervals, up to 4 times daily, as needed. the damn oxygen place wont honor his script, want more paperwork, diagnosis, etc. my dr doesnt even understand the ch and never has treated a person. but after reading research, trusting my judgment and my pain im in. he agreed. so now what? any help please
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You are presenting a fairly significant list of prescription drugs largely aimed a an individual with significant reactive airway (or COPD) lung disease. The asthma meds are a mix of bronchodilators (open up airways), inhaled steroids and a combination of the two. The medrol is a steroid (fairly equal to prednisone in potency) I would assume being indicated for the lung condition. Zolt is a proton pump inhibitor similar to protonix which blocks the production of gastric juices irreversibly. It works through an enzyme system and generally is used in short courses, it does not work right away but you dont want to use it in a sustained manner either. A beta blocker is usually used for hypertension although it has a role in migraine prevention and heart disease. The estrogen preparations are used vaginally and have little systemic absorption once used for 6-12 weeks. So if you subscribe to the belief steroids are blockers there is a concern about the medrol and some of the inhaled meds. The bronchodilators can cause feelings of anxiety and a rapid heart rate but should not block. I doubt the proton pump inhibitor is an issue. Systemic estrogen can increase drug metabolism in the liver but usually vaginal estrogen doses are insufficient to cause that. Beta blockers show up on some blocking lists but I doubt its a real issue. This is the med list of a person who has significant medical issues. Would not advise stopping any of the pulmonary drugs without close medical supervision. If she has been on steroids a long time I suspicion they are required for handling physiologic stress and weaning is probably not practical. She needs to be well prepared for the anxiety that can accompany a busting experience and a sitter needs to understand her breathing issues. Ultimately it is her decision but tread lightly Significant care and caution are urged.
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Aloha ! We have a female patient who is planning to start busting (first timer) with RC seeds (LSA). She sent me her medication list but I am not familiar with asthma medications, or hormonal supplements. DO you see anything in this medication list that could be a problem, blocking, interfering or amplifying in busting treatment ? Asthma medications: Singulair , Ventoline , Spiriva respimat , Sereride , Alvesco Medrol (for bronchitis) Zolt (for heartburn or to use with Medrol) Candesartan (beta blocker) Estrogel , Vagifem (hormonal)
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Ever wonder what Cluster sufferer are great full for?
Batch replied to mit12's topic in General Board
Hey Mit, I just sent you a PM regarding your migraine headaches. I've a handful of migraineurs taking a modified version of the anti-inflammatory regimen. So far they're all experiencing a significant reduction in the frequency of their migraines and two are migraine pain free. I used to fly F-4 Phantoms into George AFB in the mid '70s to drop off or pick up Sidewinder missiles in a captive carry program to build up flight hours before we fired them. Take care and please keep me posted V/R, Batch -
Hey Finance, I've sent you a PM that addresses your questions about the anti-inflammatory regimen with vitamin D3 and the cofactors. Please feel free to ask questions... Most CHers have them when starting this regimen... I've been doing this for 9 years. Take care and please keep us posted. V/R, Batch
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Ever wonder what Cluster sufferer are great full for?
mit12 replied to mit12's topic in General Board
Thanks for the kind words. I guess that having migraine pain defiantly sucks but at least I can function with them whereas with clusters I could not. -
Not an expert, but I've looked into this a lot. It does "indicate" what you say, but it is not conclusive. People with other "headache" conditions sometimes get relief from oxygen. For example, a notable "headache" expert wrote some time ago (2007), " I have found approximately 50 percent of my patients with migraine headaches will be able to achieve some relief with oxygen therapy. They use 100 percent oxygen for eight to nine liters a minute for up to 30 minutes." https://headaches.org/2007/10/25/oxygen-therapy/ If that was true, would more people have better results with higher flows/better masks/etc??
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Beautiful thread. Nce to see this kind of support on a consistent basis.
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...remarkable post Chris!
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@CHfather is absolutely right, listen to everything he says. I can't stress enough how important oxygen is for the treatment of CH. I can't say for sure you have CH, I am not a doctor. But I think CHFather is right that you should treat it like you do have CH and would strongly recommend you try out oxygen. I suffered with CH for 7 years before I got O2, and things completely turned around for me once I did. Imitrex is a good starting point, but I can abort a headache with O2 with no side effects in about 10-15 minutes. Imitrex makes me feel tired and terrible and can make things worse if you take it every time you get a headache (every day). My understanding of how oxygen works is that it has vasoconstrictive properties that cause the blood vessels pressing on the trigeminal nerve to constrict (get smaller) and stop pressing on the nerve. I am not a doctor, however, and this may not actually be the case with oxygen. Not a lot about how it works is actually known. At any rate, some of your symptoms sound like what happens to me. The hard thing here is that nobody has the same symptoms and triggers. Like @jon019 said, we are all different, yet the same. 2pm is a normal headache time for me, I call them my "cluster times" (mine are 2pm, 6pm, 10pm, and 90 minutes after I go to sleep). I can practically set my watch to it. There are others that are triggered by any number or combination of things, and you are going to have to find out what yours are. Some of the medical literature says clusters don't have triggers, but that is not true. For example, alcohol is a trigger for a great number of us. To make matters more complicated for you, you describe other symptoms that are not necessarily unique to CH. Some of what you describe we know here as "shadows," and there is almost nothing in medical literature about them, but most of us have them. There is a feeling in your head before you get hit with the intense pain, and it acts as a warning about what is coming. When the pain comes it is searing or hot and located behind your right eye. That pain starts migrating into the orbital area and reaches down into your sinuses and your jaw on the same side. That is because the trigeminal nerve attaches to all of those places, and is the nerve that causes our cluster pain. (CH is one of a group of conditions known as Trigeminal Autonomic Cephalagia) Also included with the cluster attack is a profound tension in the neck. This created issues with my diagnosis of CH, because it is part of the mechanism in migraine as well. I have seen no medical literature on this, but anecdotally I have a few cluster buddies that talk of their "cluster knot" in their neck or shoulder while they are in cycle and complain of the almost painful tension in the neck and shoulder. I also have sensitivity to light, especially where there is a large contrast (ex: oncoming car headlights at night). As far as the sleeping it off goes, I can only do that with shadows after an attack. However, napping is a big time trigger for me, so I can't take a nap unless I want to get hit with a 10 later that day. When I did nap, I would wake up with that familiar feeling behind my eye. This is present for me any time I take a nap, even if I was feeling fine before I went to sleep. Also, you need to start keeping a headache diary. This is important because if it is CH, chances are that they will suddenly stop one day, only to return later down the road. There are 2 types of CH, episodic and chronic, and most people (75%?) are episodic. Keeping track of your headaches, descriptions of the pain, what you ate that day, weather conditions, stressful events, etc. can help you determine what is going on. That is good information to have even if you end up not having CH. I apologize for this being so long, I hope it is helpful. I hope you don't have clusters. But if you do, you are absolutely in the right place. There are a lot of people here who understand and are happy to help you. Your first step is probably to get some O2 to try. A question for the experts: If you can abort your headache with oxygen, doesn't that indicate that you do have CH and not one of the other TACs or migraine?
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The clockwork regularity is a feature of CH that is not common to other "headaches," at least as far as I know. Of course, it is possible that you are doing something before 2:00 every afternoon that brings on a severe headache, but I don't know what that would be (eating food with MSG in it would be one possible example, though nothing really explains the severity). As jon' said, being able to lay still or go to sleep is very uncommon. "Restlessness" is in fact a diagnostic symptom of CH. Other CH symptoms include tears from the affected eye, redness in that eye, swelling in that eye and a drooping eyelid on that side. Also runny nose and pale skin. Without a different diagnosis, you of course need to treat it as CH. I have the feeling that maybe your Imitrex is a pill. If it is, it will be a very little value. As jon' says, Imitrex (sumatriptan) is meant as an abortive, to stop an attack, not as a preventive, to prevent an attack. If it is in pill form, however, you should almost treat it as a preventive, taking the pill about an hour before your expected attack, but, more importantly, (b) you should get the injectable form of Imitrex, which will stop your attack (if you have CH) when injected right at the start of an attack. In any event you can't "get it under control" with Imitrex. In fact, the more Imitrex you use, the more likely it is that you won't get it under control. Oxygen is a must! Insist on it, right away. I'm not sure what the "IV treatment" you refer to might be. There are some, but they're not usually used this early in the process. However, your doctor might have been referring to a steroid, typically prednisone, which when taken in sufficient doses can stop (temporarily) the pain of CH. It comes back, but you get some relief and time to organize your other treatments. Right now, you have no preventive (verapamil is often prescribed as a preventive, and many or most people here have found that the "vitamin D3 regimen" is a very effective preventive. They both take time to work. (There is more information about both verap and D3 in the document I refer you to in the next paragraph). You might try quickly drinking an "energy shot," such as 5-Hour Energy, at the first sign of an attack. For many people, but not all, that will reduce the severity of an attack and possibly even stop it. Strong caffeine helps some people. Some people get very good benefit from taking Benadryl, 25mg four times a day. There are many other suggestions, of varying value, in this document: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ I would urge you to follow the links there. I'm sorry it's so long, but I wanted to get down most of what I could provide to someone in your situation. You asked, "How does oxygen help?" Not sure anyone knows the exact mechanism, but oxygen, properly set up and properly used, aborts attacks, typically in less than 15 minutes and often much more quickly than that. More info in that document I just mentioned.
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cant hurt to try oxygen. I used to always think going to sleep was the only way to deal with them as well. what i would actually end up doing is just taking enough over the counter whatever to incapacitate myself from trying to fight the pain and just cringe in bed for 90 min until i pass out..
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...if it is....it's an odd form..but we are an odd bunch..... everyone the same yet different... .... typically the need to move is nearly uncontrollable..moving doesn't make a hit directly worse....or better (except for distraction....)... ....sleep!!!???.... can't see how...many a clusterhead has prayed to just pass out from the pain w/o success... .... what sounds like many hrs long is unusual (for me only with a very rare 10....)....not at all unusual to wake up with a new hit tho (and some experience what could be described as wax/wane of same unresolved hit).... ....if yur Doc knows about Oxygen it should have been #1 priority ...with Imitrex back as last resort abortive....NOT meant to be a preventative.... Best Jonathan
