Pebblesthecorgi

This recently published study looked at ego dissolution associated with the use of psilocybin (as a proxy for the classic hallucinogens). One article is the popular press report and the other is source material. This is interesting because of the noted affects on the frontal cortex. It also looks at downstream changes from alterations of serotonin receptors in the glutamate transmittors. In the context of this forum it is brought to attention because the article highlights 1) many unforeseen neural interactions triggered by psychedelic interventions, 2) highlights the relative safety of properly administrated psychedelics and 3) helps understand some of the long lasting positive "side effects" these molecules may provide. ego and psilocybin.pdf First-of-Its-Kind Study Hints at How Psilocybin Works in The Brain to Dissolve Ego.pdf

On first seeing this post I thought "here we go....". After doing a bit of research I'm thinking it is worth consideration. It kind of fits in that positive-risk-benefit cost niche. Due to Covid, there is a lot of "everything but the kitchen sink" philosophy going on. A quick database search shows several institutions are actively researching the potential of quercetin in treating the virus. Previous work was done on other global viral threats which wasn't negative. It has a reasonable theoretical foundation, is available and not too costly. It has a purported mechanism of action to decrease inflammatory cascades which is what most cluster treatments seek to interrupt. Certainly Vit D (with all its components) seems to be beneficial for many cluster headache sufferer's. It has a strong anti inflammatory mechanism. Unfortunately Vit usefulness in treating active Covid infections is turning out to be disappointing. THe jury is out on prevention with Vit D but thats a much harder study to complete. Quercetin has some safety data available. In a study of folks with chronic obstructive pulmonary disease (COPD) up to 2 grams a day seemed safe. COPD individuals are generally quite unwell so its not a reach to extrapolate safety to otherwise health folks. Many cluster headache folks have or do try the "kitchen sink" approach seeking manageable solution. So trying this isn't wacky. As always watch for contraindications, use the lowest effective dose and report your experience. Case reports and self reports never constitute "proof" but they lay the foundation for further work. Something to consider. A couple of readily gathered reports: Overview of quercetin in inflammatory conditions https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5214562/ Safety of quercetin in chronic obstructive pulmonary disease (COPD) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7047491/ Quercetin in blood pressure https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5015358/

I am very happy Tom has some relief but caution is advised. Stem cell therapy comes in many variations. The source of the cells, method of delivery and the criteria for success. There are a couple of case reports describing some degree of relief and a very small study showing some reduction in headache score but no meaningful relief. The postulated mechanism of action when treating trigeminal type pain decreasing inflammation. This makes sense because many treatments are aimed at reducing inflammation. Caution should be stressed because, in general' the data surrounding stem cell therapy is sketchy. There is a tremendous placebo effect particularly when used for joint pain. Because stem cell therapy using one's own fat cells can be done in any type of setting there is little to regulate quality or monitor outcomes. Therapy tends to be extremely expensive. There are many desperate people with pain syndromes and cluster headaches are right at the top of the list. There is little data regarding stem cell therapy and headaches. There are many offers to try the therapy but if anyone tells you they have "lots of experience" treating clusters or even headaches in general I would challenge their veracity.

I'm not aware of any articles reporting on PTSD specifically for clusters. There is some criteria if the dx of PTSD applies to clusters . Dr Larry Schor brought this up while presenting at a CB meeting. Technically he is correct although there is a visceral reaction to his perspective. https://www.researchgate.net/project/Study-Title-Cluster-Headache-Investigating-severity-of-pain-suicidality-personal-burden-access-to-effective-treatment-and-demographics-among-a-large-International-survey-sample He has presented data several times but i don't believe he has published in a peer reviewed journal

I’d say this fits in “if it sounds good it will work” rationale. It might be in the “what do you have to lose?” Category. Then again “I’m so smart and experienced so do this” may apply. How about “there is no downside so why not?” Most of these things in different modalities or combinations have been tried. The only work that has credibility is the treatment and data Batch has presented. From a strictly science point of view its easy to poke holes in the data but it’s well presented and he has decent follow up. I would take someone seriously if they did half the work Batch has done. In the end we really don’t have any one size fits all answers. My guess is we will find a combination of genetic predisposition and environmental factors are in play. It’s hard to imagine a selective advantage that allowed cluster headaches to survive the genetic pool but someday in retrospect it will all make sense. If it is genetic then I guess we really are all related.

Cluster headaches predate cell phones, artificial preservatives and food additives.

If you keep your meds out of light and at a stable temp (avoid heat) they should last long after expiration date (which are sort of made up and reqiuired by law). The same is true for self sourced medications.

I do not disagree there is some data to suggest Vit C can shorten the duration of a cold and there is some evidence it holds promise in reducing the lung inflammation in viral related pneumonia but the data is inconclusive and all over the place. Using 3 grams of Vit C and 50,000 IU of Vit D3/week has no down side and is inexpensive but I would caution considering it a definitive protection or treatment. It is not being presented as such. I urge caution when interpreting potential interventions in a time of chaotic information. Certainly we want to use every tool at our disposal (clusterheads are renown for this) but the data is far from convincing or definitive. Certainly in the cost/risk/benefit analysis supplements like Vit C and D3 are worth considering just don't think they provide a suit of armor. The information provided is good and interesting but its easy to extrapolate beyond the data reported.

Thank you for your explanation. I think the switch in languages gave the impression it was for a larger audience. I understand most if not all Fins speak English. It is horrifying to think anyone in pain would be treated so poorly by those who should be serving. I applaud your work.

Very nice production. I wonder if calling an ambulance is really helpful in a established cluster person? Distances may be reduced in Finland but in the US by the time they get there and if you can talk them into O2 the attack is gone. Supportive understanding care which means "leave mean alone and dont overreact" rules if you are caught away from O2

Not sure what a POC is but an O2 concentrator will not meet needs. They can't maintain the flow rates or O2 concentration required to abort a cluster. There are a few folks who report a concentrator working but they represent the exception and not the rule.

You should not have any interactions from a beta blocker (metroprolol) and the Vit D protocol. While beta blockers have some value in preventing migraines they have very limited success in cluster headaches. I suspicion your provider is lumping clusters and migraines together but they are very distinct entities and need to be addressed as such.

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.

Very glad you tamed the beast. With you history of DES exposure I trust you are getting continues surveillance. The biggest concern for DES exposed females is clear cell carcinoma of the cervix. Regular evaluation is still recommended no matter ones age (at least in the US). A bit off topic but the DES story is one of those "unanticipated outcome" tales of woe.

TENS units are all over the place in quality, cost and indication. The over the counter versions sold as massage units have a range of energy delivery options but are mostly designed to stimulate muscle twitches and make you feel like they are doing something. Very imprecise and hard to replicate. Devices like GammaCore use a fixed frequency and allow you to increase the amplitude. They send a retrograde signal up the Vagus nerve. In theory its possible to make a TENS do a similar thing but you would be awfully lucky to get it to work in a manner similar to a dedicated device. I'm not sure the frequencies available in a TENS unit match what GammaCore produces. I would be very cautious on the neck because vagus stimulation can lead to heart arrhythmia and a loss of consciousness (fainting).

If you require general anesthesia advise the anesthetist of your clusters. Any decent anesthesia person should be aware of the condition. Ask them if they think its ok to include ketamine and decadron to the anesthetic. Propofol also can be helpful but ketamine is better (in theory at least) Also request to wake up with high flow (10-15 lpm) running in the non rebreather mask. These are rational reasonable requests and should help. Frame the request as a question so it can be their idea ;-)

Thank you for sharing your experience with a TENS unit. GammaCore has been a pretty big disappointment. I personally had an opportunity to give it a good try and found it utterly useless. Others report mixed results but it rare to hear a resounding positive comment. Electrical stimulation has been very popular in many areas of pain and dysfunction and a variety of delivery systems are available (TENS type units, direct contact, using acupuncture needles with signal generator attached and implantable neurostimulators.) The theory with GammaCore is to use the vagus nerve as a conduit to affect whatever events are leading to the vasodilation which may be causing the pain. The placement of the GammaCore is intended to provide focused stimulation to the Vagus nerve. By placing the patches near the jaw and behind your head many different nerves are involved and there may be unintended consequences so caution is advised. Also with nerve stimulation there are several variables that can dramatically effect the outcome including frequency, pulse width, amplitude and intensity. Depending on the settings you can get diffing results. Patch size translates to surface area and you have to be careful if the patches are reduced in size as the energy delivery will be concentrated. Be careful its not a risk free thing you are trying especially in a nerve rich head

If you are having a series of attacks beyond the initial treatment it is likely the procedure has involved a nerve that is propagating the cluster sequence. Its true the vasoconstrictive effect of epinephrine will tip the cluster cascade but the life of epinephrine is fairly short as are its constrictive effects so something else is engaged to have ongoing attacks. I would go full beat down on this monster. D3 with big loading doses, antihistamines (benadryl 25-75 mg every 6 hours, remember it can make you drowsy), bust if you must (or can), prednisone if you got it. Attack without mercy and see if you can interrupt whatever triggered things. You need the dentist so be sure to communicate with her or him.

Welcome. Sounds like you were lucky to have a intelligent thoughtful physician and folks who cared about follow up. Its great to hear a story from someone who didn't go years without a diagnosis. Your other condition (?primary, secondary or parallel?) is interesting as well. In reality no one should wish to be a facinoma but at least you have a diagnosis and treatment options. In answer to your question: cluster headaches are generally an independent diagnosis and not secondary to another condition. In most cases they occur on their own and are managed in a focused way. Certainly there are folks who develop clusters following trauma or infection while others have concomitant head pain conditions When more than one thing in occurring it makes diagnosis and treatment a quagmire. We hear many stories from individuals with multiple issues and diagnosis but I do not believe their are any other conditions which predictably progress to clusters. I can only say some with episodic clusters progress to a chronic state and less often the opposite occurs. Hopefully this well curated site will help you develop an effective treatment plan.

I'm not sure its fair to attribute clusters to serotonin level drops. While serotonin levels have many effects throughout the body its never really been established what is happening in a cluster attack at a neurochemical level. Tricyclics change serotonin levels via a different mechanism than modern SSRI. Tricyclics have a pretty narrow therapeutic index and can reach toxicity pretty quickly. Tricyclics are of limited use for other headache syndromes but not clusters.

You need a more knowledgeable neurologist. That was a punt, next....patient. There is zero evidence that tricyclic antidepressants effectively help clusters or migraines for that matter. Your poor excuse for a neurologists wanted to do something to get you out of the office so placated you with a prescription. An great example of someone who goes the extra distance to be intellectually lazy.

As much as you don't care for health care professionals it might be time to develop a relationship. Having a regular at 20 years young isn't really something one aspires to but it does have advantages. Establishing early and getting to know each other paints you as a known person and you will avoid a "drug seeker" type of label. You can also make sure your immunizations are up to date especially things that you don't think of like HPV or Hepatitis. It also gets you follow up appointments sooner and keeps you out of the emergency room. Personally I would suggest finding a good mid level (nurse practitioner or physicians assistant) because they are usually attached to an internist of FP and have a bit more time to listen. Go to a visit with written notes and bullet points of the main things that are bugging you. Its easy to get flustered and feel rushed when the caregiver walks in. TO your concerns: You are obviously experiencing anxiety over the lack of knowing what is going on. It doesn't sound like classic clusters. A good evaluation and some ideas would go a long way towards establishing some clarity. Remember this is your life and your health so you control your fate to a large extent. Be interactive, listen and follow up until it makes sense. Even though many who participate here are knowledgeable you still need a diagnosis or to at least rule a few things out. Wishing you the best

search brantonvet or transfill oxygen on ebay to contact and ask

You might search for custom fabricators. I doubt you'll find one to go from a medical system to a welding system. I like the idea though. There's a vet supply company on ebay that makes transfer tubing for medical to medical I wonder if they would make you one. Experience is advised because of the high pressures. Don't want to have a viral accident and poison the water for all us O2 suckers.

welcome