Pebblesthecorgi
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Posts posted by Pebblesthecorgi
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I think there is much truth in some of the points and other points are borderline absurd. It is true that nutrition is a very small part of traditional medical school curriculum. Most medical schools (US at least) have adopted a systems type approach to learning. What this means is after getting core training in anatomy, physiology, biochemistry, histology and other basic science subjects the curriculum moves on to an approach based on body system. For instance, in the cardiovascular system module includes the pharmacology, anatomy, pathophysiology and basic treatment of that system. Obviously the depth of knowledge required to actually treat and diagnose a cardiovascular problem exceeds anything a person can learn in a few weeks. Post medical training takes years even to recognize and treat common problems. So its easy to understand how nutritional supplemental information can get lost, dismissed and misunderstood. The other issue becomes how litttle most individuals are willing to be responsible for their own care. Imagine how few health problems the system would have to deal with if people were fit, drank in moderation, avoided harmful drugs, didn’t smoke and modulated sexual behavior. Not trying to make excuses but adding perspective.
Very few clinically active physicians have an interest in people not getting well. Little to no personal revenue is generated by physicians from writing a prescription. Sure some collect consulting fees from pharma but generating any substantial earnings from this is negligible and the money’s assigned are less than a day in the office generates. In the last decade or two most physicians do not even see drug representatives and are legally required not to benefit from prescription writing. Indeed physicians are trained to write prescriptions and usually prescribe based on treatment protocols, familiarity or formulary restrictions. There are so many folks who need to see a doctor for a variety of problems thinking they would not act in what is believed to be a patients best interest approaches silly. Do you really think a Neurologist wants a 4-12 month waiting list? Most caregivers want people to get better quickly and easily. Because of the overburdens and limitations of an office practice many primary care providers have to “punt” to a specialist just because they have no time to study a non responding problem or want to streamline a diagnosis and plan. Of course they might also be motivated to move a person with a difficult personality along too.
In our situation we have a debilitating, life crushing condition which is uncommon, poorly understood, and multi factorial. It is also non lethal on the surface. Because providers fail to see how this condition kills it gets a lower priority and folks like us suffer. Forums like this are essential because it allows a free exchange of experiences and allows us to work out what works, what is said to work but does not and how to fine tune interventions to gain maximum relief. Cluster headaches have certainly been given a low medical priority, under appreciated suffering and downright criminal treatment especially how long the fight to get O2 recognized and covered. Again forums like this and organizations like Clusterbusters help where the “system” never would.
The legal system does create limit some provider hesitancy for novel, new or out of normal recommendation treatments. Also when you are treated outside of normal protocols services attached to those treatments are not covered. This creates conflict between patient and provider because imaging, lab tests and procedures can go uncovered thus generating financial obligations few can meet without insurance (again a mostly US problem). Trust me, if you got a kidney stone after being prescribed high dose vitamin D beyond standard recommendations a motivated patient could find a lawyer to help sue the provider despite the strength of evidence to the contrary. It would likely be settled out of court and you would never hear about it.
So we take our Vitamin D, ingest illegal substances and try whatever crazy sounding thing we hear about to relieve this indescribable pain. We own it and don’t need the traditional medical systems approval.
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As a long self perceived dog person having kitten dissolved my personal bias against cats altogether. Kittens do become cats and cats turn out to be rather fun if treated with love and respect.
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In recognition of childlike behavior I change my avatar to something more mature
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Today commemorates Albert Hoffman’s first experience with LSD, a substance he synthesized years before but dismissed as not interesting. Years after creating LSD25 he brought it off the shelf for a second look. After an unintended exposure on his skin the molecule entered his system and took effect while riding his bicycle home. In an attempt to understand what happened to him, self experimentation followed setting the stage for a generational shift. LSD has a presence in many of the modern ages most notable achievements in social policy, science and art. It fueled a cultural shift during the Summer of Love. That launching pad now supports a new revolution in care.
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Having information, interpreting information and applying information is very much an art as much as science.
It is great to have a repository of information but organizing and translating it to use clinically is a very complex matter.
One thing which becomes apparent after interacting on forums like this over the years is the importance of a proper diagnosis first and foremost. Treatment remains a poorly understood topic largely before clusters are a bit of an orphan condition. Also there are so many mitigating factors and comorbidities.
Having thousands of pages of information is impressive and a resource but Occam's razor generally prevails.
Unfortunately no matter how much information is out there we will never be able to "reason" a solution. Ultimately it takes difficult to perform studies and years of clinical work. Until we have solid answers "citizen science " remains our best resource.
Thanks for the repository
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If you have clusters and have had fatal illness ruled out you will find 99.9% of neurologists to be unhelpful (being nice). You need a primary doc who knows how to read and listen so you can get the appropriate treatments. Appropriate is a reach as there are few good ones but at least lab levels, O2, triptans and steroids as needed. Other than that you can identify the best we know about here.
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Good to keep our situation top of mind. Especially good in a widely read journal. One author looking at psilocybin, the other Vit D. Hopefully it will help recruitment for their projects.
Thanks for sharing
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It means Medicare does not disapprove coverage. It also means O2 is an acceptable option to treat clusters from an agency standpoint. Secondary insurers and primary insurers generally follow medicare guidelines but are not obliged to. Remember all of these insurance companies act like little franchises under one big umbrella. Depending on the employer they are representing, risk group insured are in and state regulations coverage can vary even within what seems like the same organization. It is confusing and totally sucks they can do this. If you are getting pushback you need to keep appealing to the benefits manager at your HR department or case worker until satisfaction is obtained. At this point, based on the medicare ruling, the insurance company is choosing not to cover. Have them do a cost analysis of oxygen verses CGRP drugs or triptans..The way is paved but the fight persists.
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I tried keeping a log many years age I have also tried several of the apps out there. Abandoned it because it was too depressing. I thought with enough data I could plan and manage the beast. Tracked barometric pressure, moon phases, diet in addition to O2 Use, imitrex injections, steroids and Vit D protocol.
I decided it was futile and depressing to see how much of my quality of life was given up to the beast. For me, nothing seemed a pattern even though I was convinced there was one. In cycle even smelling alcohol set me off but that was the only reliable trigger. As most of us no when in cycle rationale reason gives way to scattered thought and emotional upheaval.
Live life the best I can using what grows from the earth, O2 and inject when desperate
Keeping accounts only gives the beast more attention than it deserves.
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Amitriptyline is an old fashioned antidepressant in the tricyclic class. These types of meds were used extensively as anti depressants until SSRI's (Prozac being first to US market) took over the market. They currently are often used for chronic pain, sleep disorders and some forms of headache. Some doctors still use as an anti depressant.
Starting at 150 mg is extraordinarily high dose and can be dangerous. You have experienced the danger for sure. Getting somewhere without knowing how or why is pretty dangerous.
As amitriptyline has been around for a very long time it has been tried for a lot of conditions including cluster headaches. There is some evidence for the med in prevention of cluster headaches but its pretty spotty.
Given the evidence available for oxygen as an abortive for cluster headaches its inexcusable any knowledgeable provider would deny access.
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This is the management suggestion from UP To Date, a widely used physician reference:
Verapamil is the agent of choice for the initial preventive therapy of cluster headache. Glucocorticoids may be used adjunctively to help suppress attacks during the initial titration of verapamil or alone when cluster attacks are infrequent and short. (See 'Verapamil' below and 'Glucocorticoids' below.)
Other agents that may be effective include galcanezumab, lithium, and topiramate.
Verapamil — Verapamil is the drug of choice for prophylaxis of episodic and chronic cluster headache [3,43]. Verapamil is usually started at a total daily dose of 240 mg. Both the regular- and sustained-release formulations are useful, but no direct comparative studies are available. Patients treated with regular-release verapamil should receive the total dose in three divided doses a day, while those treated with the sustained-release formulation should receive two divided doses a day.
There are multiple titration methods when treating cluster headache with verapamil:
●We suggest starting at 80 mg three times daily and increasing the total daily dose by 80 mg every 10 to 14 days as tolerated.
●As an alternate titration regimen, verapamil may be initiated with a short course of prednisone. In a short-term treatment trial [44], patients started verapamil at 40 mg three times daily and increased every three days up to a total daily dose of 360 mg. Those additionally assigned to daily prednisone 100 mg for five days and tapering by 20 mg every three days had fewer cluster attacks in the first week than those assigned to placebo (difference -2.4 attacks; 95% CI -4.8 to -0.03).
Most patients respond to a total daily dose of 240 to 480 mg. However, clinical experience suggests that some patients require a total daily dose of up to 960 mg to obtain full prophylactic benefit [1,45]. In an early open label trial, titration up to a total daily verapamil dose of 1200 mg was employed [46]. Thus, an adequate verapamil trial for most patients entails use of a total daily dose of 480 mg to 960 mg before the medication is regarded as a failure. The benefit of verapamil is usually seen within two to three weeks. When the bout is ended, verapamil must not be ended abruptly but should be gradually reduced over two to four weeks depending on the dose and finally stopped.
The use of high-dose verapamil is associated with an increased incidence of electrocardiographic (ECG) abnormalities, including heart block and bradycardia [47,48]. Therefore, an ECG should be obtained after each dose increment above a total daily dose of 480 mg. Some experts recommend getting a pretreatment ECG to screen for baseline cardiac arrhythmia [49].
Other side effects of verapamil include edema, gastrointestinal discomfort, constipation, dull headache, and gingival hyperplasia. However, verapamil is usually well tolerated and can be used safely in conjunction with sumatriptan, ergotamine, glucocorticoids, and other preventive agents.
The efficacy of verapamil for prevention in cluster headache comes from observational experience and some trial data [3,46,50,51]. In one trial of 30 patients, daily verapamil at 360 mg in three divided doses reduced cluster headache attack frequency and analgesic consumption [43]. During the first week of treatment, the median number of daily attacks, the primary outcome measure, was similar for patients treated with verapamil and placebo (1.1 versus 1.7). However, in the second week, the median number of daily attacks was significantly lower for patients treated with verapamil (0.6 versus 1.7). Additionally, only those assigned to verapamil reported a reduction in headache frequency of >50 percent at two weeks (12 of 15 [80 percent] versus 0 of 15)
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Its interesting that the military is a primary funder of psychedelic therapy. There are several trials underway looking at treating PTSD, moral injury and brain trauma with various psychedelics. Mechanism of action and effective protocols are still undefined but the overall success rates are not disputable.
Veteran self help groups and/or healing circles are also widespread. Less is specifically known about outcomes because these groups hold thing closely and in confidence. They tend to practice a combination of talk, classic psychedelics and other psychoactive substances like toad DMT, ayahuasca. ibogaine and MDMA.
Hopefully successful protocols and positive results will become the norm. One thing for sure is psychedelics have the potential to make the world a better place.
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As I have observed the long term effects of psychedelic therapy over the past few years along with the significant amount of research and antidotal reports it would not surprise me psilocybin may help.
I would speculate the help comes on two fronts. 1) The classic psychedelics' seem to have neuro regenerative capabilities which hold promise for all sorts of issues like physical trauma and psychic trauma. There is much to be done in proving this but the data is converging from many different directions which suggests to me it is valid. 2) The classic psychedelics ability to reset the "default neural network" have a profound effect on helping with coping and the emotional baggage physical suffering brings. Long term conditions like clusters and fibro can at least benefit from this aspect of psychedelic properly utilized. This is of course, my opinion.
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In short,
High dose prednisone 60-100 mg a day for 2-4 weeks can help especially in an episodic situation while other modalities kick in. It can also help with getting some sleep if one gets strung out on nocturnal attacks. Many docs prescribe a dose pack which is a burst dose with quick taper commonly used for back pain. This may have short term help but its not enough for cluster headache in most cases.
Of course there are costs with the benefits. Prolonged steroid use can suppress the adrenal glands and it might be a struggle to get them back in sync. The more feared side effect is aseptic necrosis of the hip. This is a situation where the blood supply to the hip joint is occluded with small fat emboli and the bone dies and the joint needs replacement. Unfortunately this situation is not dose dependent and unpredictable when it might occur. On the flip side many many folks need steroids for a variety of conditions and tolerate them just fine. Long term steroid use can cause other issues so its not practical in our situation.
The most common side effect is agitation and short temper especially during withdrawal.
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There is a standard reference in a resource called Up-to-Date. It is an on line resource most hospitals subscribe to for their caregivers. Individuals can also get a subscription. I believe a non medical person version is also available.
the offered info is current, collaborative and generally adheres to standard of care.
for cluster headaches oxygen is a first line abortive.
I believe a copy was uploaded some time ago. I’m not sure if it still lurks.
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There is a lot of curious, conflicting, confusing and contradictory evidence out there. It’s always been the case but much more amplified and widespread as regards covid because no one is unaffected.
There are so many examples of this from hydroxychloroquine to ivermectin to vitamin D to vitamin C to famotidine and on and on. There is also tons of controversy about anti virals and monoclonal antibodies. Won’t even address vaccine issues.
Things are moving so fast and so much data is pouring in it becomes very difficult to vette information fairly and apply it appropriately. And then there is the rapidly changing landscape because of mutations. It is very hard to maintain a consistent treatment protocol and apply it appropriately. Then there are the resources which are taxed beyond comprehension especially in human terms. So by the time the sound bite is distilled the information reported seems confused and conflicted. And it is. I can’t thing of a time in history when so many people had access to so much information so fast in the context of an evolving situation.
Then there is the interpretation of the data. For instance, if I am correct, the study sites regarding Benadryl was a report of in vitro (test tube) attachment of the virus via its spike protein to human cells. What is seen in the lab seldom translates to the real world. So while the observation may be correct what it means is a longitudinal population application is completely unknown. Of course there is professional fraud as well..an example of the seminal report of ivermectin to treat covid which was debunked and withdrawn. Normally this process occurs within a small group of researchers with an interest in a topic. Everyone is interested in covid so it’s amplifies the big mess of info we are fed.
On an individual level each person must do a risk benefit analysis and make a decision for themselves. It’s probably prudent to listen to what the mainstream, practicing providers suggest but if you choose to augment with other interventions and are not causing yourself harm why not?
Things like masks and vaccines are a bit more controversial because the point of their use is to prevent others from being infected. It’s far from 100% as a strategy but its the best offer we have. Members of a society should work together to protect each other and support a common interest. Society has devolved a bit in the face of current events but I will remain optimistic our center will return.
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Hard to imagine there’s not a genetic component. It’s hard to clearly establish because so many are misdiagnosed or suffer delayed diagnosis. And family history gets lost. 50 years ago crazy grandma was written off as a crock or malingering. Who knows who had what? Even those of us who have a deep pedigree there’s not enough info to know. Also paternity could be inaccurate or there is an unknown adoption sort of situation. I believe the genomic studies will cast a better light on whether genetics are a substantial contribution.
there is a study ongoing investigating this very question. Several of us gave blood a few pre covid years ago.
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Cluster headaches are like belly buttons, they have been around forever
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My personal belief is cluster folks use tobaccos as a vasoconstrictor which is why the prevalence is so high. Sort of like "clusterheads use more energy drinks than the average person"
Anything to narrow those vessels and mitigate the pain
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Baclofen is not a NSAID it is a GABA antagonist. Most commonly it is used as a muscle relaxant. It has a tendency to make people feel dopey and dysphoric.
A one off report of curing something as complex as alcoholism is problematic . Most of the research in this area is inconsistent. The use and withdrawal of baclofen can have serious consequences.
For our purposes there has been limited reports of baclofen use in treating cluster headaches. An optomistic report of a case series in 2001 shoed promise but no follow up seems available.
Dealing with uncommon conditions like ours is problematic. In the end it would be hard to argue against proper nutrition, balanced vitamin levels and a healthy lifestyle. Easy to say, hard to execute.
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That is the study I mentioned. Its the only study underway. Searching clinicaltrials.gov brought it up. Its started in 2019 and is expected to close in 2023
you can search by condition and when you combine cluster headache and lsd its what comes up, it is the only study to match that combo
https://clinicaltrials.gov/ct2/show/NCT03781128?cond=cluster+headache+and+lsd&draw=2&rank=1
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ok I found the article, I'm not really soo sure how good it is but thats for journal club I guess.
https://ascpt.onlinelibrary.wiley.com/doi/10.1002/cpt.2487
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I am a bit skeptical about the info this company touts. It is incredibly hard and time consuming to do this research (how long has the Yale study been recruiting) and yet looking at what they report, there are no references to scientific journals to support their claims. A search or govermenttrial.gov yields only one LSD and CH study underway since 2019 and still recruiting 30 patients. The D3 study Batch is part of a cluster headache search and still recruiting. It is unlikely to claim expertise and therapeutic results (LSD/Mescaline/psilocybin/etc) in all of these areas. MDMA has been studied by a large group worldwide (led by MAPS) and they are still at least a year away from final results. The time frame is so accelerated and the lack of references is concerning. A slick website, lots of unsubstantiated claims and improbable timelines would suggest great caution. This seems like a financially motivated group trying to piss on every bush in the psychedelic world to claim patent rights
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I like your idea of contacting the compounding pharmacy to locate a physician who will work with you. Can’t your doc get you a bridging prescription? Ketamine is schedule 3 so it’s like getting an opiate. Miserable place to be in. I’m not sure I’d be so stoic with the O2. Use it for all of them cause it works better and faster before the headache is fully establIshed. Keep up the positive attitude it’s tough to stay strong when you are constantly in the shit.
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COVID and CH
in General Board
Posted
It is not surprising that anything raising general body inflammation could potentially trigger or exacerbate a cycle. Vaccines work by triggering an immune response to produce antibodies which activate when the harmful antigen (in this case the covid spike protein) intrudes. Personally some of my worst attacks were in conjunction with systemic infection.
This of course creates a bigger dilemma; to vax or not to vax? For the purposes of this post I’m not on either side and firmly believe this is a personal decision. If in fact vaccination can trigger an attack or even a cycle that sucks but is not surprising. The subsequent issue is what happens to you if you get covid after getting vaccination vs forgoing vaccination? By now its pretty clear contracting one form of covid vaccinated or not is inevitable but we still don’t have a clear picture of the consequences of “long covid” in the context of vaccination.
From a cardiac perspective, vaccination has a very small but real chance of inducing a cardiomyopathy or pericarditis (inflammation of the heart muscle or sac around the heart). Some folks use this info to not get vaccinated. The problem is if you are not vaccinated and contract covid your chances of getting myocarditis or pericarditis is much higher and it is more difficult to resolve. Same for “long covid”, it seems unvaccinated folks have a much higher incidence of “brain fog”, fatigue and systemic illness than their vaccinated counterparts.
Extrapolating it seems reasonable to speculate that covid could trigger clusters worse than the vaccine and have a longer effect in the unvaccinated. This makes it imperative to do one’s best to take precautions vaccinated or not to minimize exposure to covid and inflammation in general. There are no easy answers for this and I doubt we will ever have a definative answer; especially one we will all agree on.