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Pebblesthecorgi

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Everything posted by Pebblesthecorgi

  1. Hmm Is that true in Georgia and Missouri? Sorry could not help myself
  2. The measure to decriminalize passed. It is still illegal to use or possess MM. This is a bit problematic because even though psilocybin has impactful positive benefits used in the wrong set and setting or at too young an age can cause significant harm. That harm will create a soundbite which will detract from the positive movement created by organizations like MAPS. So ballot initiatives like this are a mixed blessing.
  3. I agree with CHF. It does not sound like clusters. Getting a proper diagnosis is most important. If your Neuro is indifferent or can't figure it out go to a headache center.
  4. couple of questions: 1) What sort of infusions? 2)How old are you 3) Any history of heart disease? 4) have you ever busted?
  5. I keep O2 in my car and office at all times. I also have imitrex available at all times if I need a quick abort. Until recently I only got hit at night and rarely encroached on work. Busting has spaced out the cycles considerably but I am rarely less than 5 minutes away from O2 or injection even when I was 2.5 years pf.
  6. I would upload for you but the file size is 5 mb which exceeds permitted limits. The first article is a case report of deep brain stimulation in white matter that needed reprogramming at 10 months and reports of pain free at three years The second is a review article that includes cluster headaches. The article advises caution with surgery and clusters as reports of initial success tend to wean off significantly.
  7. You can ask your doctor about CBD but the reality is there is so little data other than self reporting you will only get an answer based on their observations. Some physicians who practice under the Functional Medicine banner have more experience working with these substances but there is a paucity of traditional scientific literature to support or deter the use of CBD. Part of its popularity is because its relatively novel and widely available. The other reason is you can get it without engaging the medical system and traditional medicine has little to offer the chronic pain person particularly if there is a component of psychic pain
  8. Micro dosing is all the rage these days based on popular books like How to Change your Mind by Pollard. This is being used in the creative crowd and by folks for treatment resistant depression. The most talked about strategy is 1/10th a dose every 3-4 days. Everyone swears by it but data is lacking. Similar situation for cluster prevention. Folks are trying it but there is a paucity of data as DD has pointed out. I am amazed you are feeling the effects of a gram once a month you must either have potent stuff or a susceptible brain. Depending on your supplies you can make a tinture of MM for microdosing. For instance 20 grams dried in 200 cc Everclear, soak for a month or so then you have 0.1 gram per 1 cc.
  9. A steroid "dose pack" is generally like pissing in the ocean and is not enough steroid to expect relieve. If he has a cardiac condition that precludes the use of imitrex that condition should be addressed so he has the option of using when in a corner. I know everyone is cautious about triptans and heart issues but the concern seems a bit overblown when you review the cases and the the FDA reports. My point is if his cardiac status is so tenuous to have an absolute contraindication to triptans then there should be room for improvement. The valium may help him cope with the anxiety clusters can bring but will not exacerbate or diminish an attack. O2 will be very important to try...if it aborts his attacks it is much more likely he could respond to busting methods (my opinion) Proper technique and flow are important before discounting it as a treatment. If you want to stick to legal offerings and D3 isn't helping consider asking about CGRP injections (insist on 140 mg/month to start) Though expensive, relatively new to market and has a few unknowns it has shown promise in treating clusterheadaches. The general consensus is GammaCore is pretty useless although I am sure there are some exceptions. The hospital could help if they give him oxygen properly and/or give him imitrex in a monitored setting. Otherwise not much they can do
  10. If you go to clinicaltrials.gov there is a listing of ongoing approved trials for treating many conditions including clusters. Oregon is not listed. To the best of my knowledge the only ongoing study looking at psilocybin for the treatment of cluster headaches is at Yale. I doubt another center is doing an approved study just because getting the drug would be problematic without approval and tif they used mushrooms I doubt anyone would publish
  11. I appreciate what you are trying to do and have often thought how to communicate the exquisite pain cluster headaches produce. In reality, like a mystic psychedelic experience, it is ineffable, there are no words to describe the experience. There is no empathy except from another fellow clusterhead. The whole thing sucks beyond measure and to me it doesn't matter if anyone understands so I don't bother. Words always fall short. For the persistent soul who presses the issue I direct them to YouTube and Dan's national geographic appearance. The video does more than words could ever convey.
  12. I think the general idea is that hyperventilating reduces CO2 levels which creates an imbalance between CO2 levels and O2 levels which results in respiratory alkalosis. The respiratory alkalosis results is cerebral vasoconstriction which contributes to the desired effect of pain relief. The high O2 levels independently promote central vasoconstriction through a mechanism that is unclear. Our Boston neuro friend had a slide with the putative mechanism of action for O2 but in the end we don't know for sure why. My guess Kudrow was trying things to change Ph or observed a patient who was coincidentally getting O2 .
  13. The average tidal volume of a male is 500 ml. So if you have a 3 Liter bag that would have 6 tidal volumes, even if you have twice the average tidal volume a 3 liter bag would have 3 breaths without refilling. Normal respiratory rates are 12-20 breaths per minute. So if you are breathing at say 15 breaths per minute with a normal 500 ml tidal volume you would use 7500 ml of oxygen per minute. So If you start with full 3 liter reservoir bag and a valve flowing a 6 LPM the bag is capable of being filled every 30 seconds you should not run into an empty bag until near the end of a minute assuming a person could maintain that pace. Running at 10 LPM starting with a full 3 liter bag would be difficult empty the bag. Now of course respiratory rate, lung capacity and length of expiration will play a role. Each individuals physiology and anatomy will influence what flow rates work but for the majority of folks the valves provided usinf a rebreather or optimask set up should work. I just don't want folks to become discouraged if they get a 6-12 lpm valve and not try it. Breathing technique is probably more important than flow rates as blowing off CO2 likely produces the effect we want more than having the O2 running through our arteries.
  14. May be true for you but if you look at the studies providing the evidence for giving O2 therapy evidence of efficacy the flow rates used were 6-12 lpm. There are many variables in the equation so some people will need higher flow rates and volumes but the majority will not.
  15. Just for the record studies done looking at aborting clusters earning Class A evidence for efficacy were all done at flow rates of 6-12 LPM. If these flow rates are not effective for an individual then trying higher rates (masks and technique too) is certainly acceptable but if you doc and O2 provider start you with a regulator that can only do 10 LPM don't despair the chances it will work are pretty good.
  16. Since you have gone into episodic remission it would be a good time to study busting type alternative therapy. As an episodic my observations on GammaCre is similar and tend to agree on the Amovig. Busting clearly helps
  17. psilocybin is mostly metabolized in the liver so any other drugs or foods that use the same enzyme system can influence the drug half life and duration of action. As far as direct toxicity to the liver there is no known problems from the cubensis species. Amanita species are very hepatotoxic and can be confused with psilocybin species by underinformed people. The pharmacology of psilocybin is pretty well defined and you would have to eat the equivalent of 10 pounds of mushrooms to approach toxic doses. In general mushroom foraging is best left to an expert. As a side note some of the wood loving species containing psilocybin (psilocybe Azurescens) described by Stamets have been reported to cause a temporary paralysis but the mechanism is poorly understood.
  18. It is unlikely the symptoms you are experiencing are from the prednisone or the taper. Your treatment dose and duration should not cause the symptoms you are reporting. Burst doses of prednisone are generally used for acute conditions like back pain or an exacerbation of a lung condition. The taper is a way to get the anti-inflammatory effect and reduce some of the agitation steroids can cause. Treating cluster headaches with steroids is another matter and often requires high doses 60-100 mg for a few weeks followed by a wean. Most people believe the weaning is to prevent adrenal insufficiency because long term steroids can suppress adrenal function but in reality the wean mostly prevents the mood swings and agitation steroids and steroid withdrawal can create. If you have been on steroids for a couple of weeks coming off them can be hellish.
  19. Might be. Cluster headache diagnosis is based on symptom criteria and the absence of another diagnosis. This is why imaging (CT or MRI) is ordered once, to be sure there is no brain lesion contributing.
  20. Chicken or egg....do we sweat because our hypothalamus is fucked up or because we are in excruciating pain? Many cluster heads have temperature intolerance worsened during cycle.
  21. My experience is identical to boatman. I had a free model to try and it failed to limit attack, abort attack or prevent an attack. I tried several strategies without any positive effect. Very disappointing because if it worked travel would be a easier option. I have been querying folks since it was released and have yet to find an enthusiast user. Then again if it works those folks might have better things to do than post on forums.
  22. Treat it like a baby in a car seat. I keep mine behind the front passenger seat. Been known to wear the mask driving once the pain lets up a bit and I can see.
  23. Sorry you have had to join the Cluster community. Welcome and thanks for sharing your story. First remember those who frequent this forum are a diverse group with broad personal experience trying to manage the beast. Some folks have a broader perspective while others hold strongly held opinions. Ultimately you have to make your own choices and do what is best for you. Present thoughts are included in this caveat. The purpose of the EKG monitoring of verapamil is to identify conduction disturbances that the drug could contribute to or to screen folks for abnormal heart rhythms which the drug could worsen. First degree heart block is general a benign condition and alone generally does not result in a slow heart rate (bradycardia) . Most verapamil conduction disturbances are related to higher doses more than 240 mg a day. Many use 960-1200 mg a day if they can stand the constipation. There is very little data or reports of cardiac rhythm disturbances with triptans. In rare cases there may be some compromise to the cardiac muscle because of blood vessel constriction. My suggestion would be to have a proper cardiac evaluation to look a baseline function and not simply assume the medications are the culprit. Your findings may be from an underlying predisposition. Read the resources on the site. Consider trying oxygen, Give D3 a try. Hold off on considering busting until you have a definitive answer regarding your cardiac function.
  24. I agree with what the others have said. The very nature of triptans is to abort an attack. Oxygen is a safer bet but of course has its own challenges and does not always work. Oral imitex is basically useless as a cluster aborter so you are left with injectable. Though caution should always be used and cardiac conditions should be treated first triptans are generally safe when properly used and doses limited. Rebound headaches are an uncommon but real occurrence and generally occur when the drug is used beyond suggested doses. Yes there are some reports of folks going chronic both on the forums and in the literature. as case reports. There isnt enough controlled data to say for sure. Even though imitrex can be "life-saving" its inability to bust a cycle or act as a known preventative makes it second best. Busting measures and D3 should be considered. Now cynical me has a response to your doctor giviing you a hard time. This is more likely due to the cost of the drug. he pharmacy spend on triptans is significant and treatment linitations are based on migraine headache folks. Clusters need to be addressed in a different way but the insurance doesn't recognized the difference. Most episodics who coose to use imitrex horde it while out of cycle so they have enough to get through the next cycle.
  25. You are on a crapload of meds. Establish if they work or not and if they don't wean them away. Familiarize yourself with O2 for aborting and if it works it will help confirm your diagnosis. Also I suspect most "alternative medication" success stories also respond to O2. So if the O2 works learn about busting and if you are comfortable and prepared consider trying it. Good luck.
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