Jump to content
ClusterBusters

Pebblesthecorgi

Advanced Members
  • Content count

    426
  • Joined

  • Last visited

  • Days Won

    50

Everything posted by Pebblesthecorgi

  1. Dosing with something that comes from nature has many variables that we are aware of and others we haven't even thought of yet. Your doses are very modest so you might have been getting results at the very edge of therapeutic (whatever that is). In discussing these substances outside the cluster community there seems to be a variable range of "effective doses". Some folks seem exceedingly sensitive and other resistant to the effects of entheogens. I personally believe the variable response has do to variations within the naturally consumed material. I suspicion the psychedelic tourism folks give folks large doses to be sure their "customers" get an effect. My rationale for believing there is huge variation in the harvested material is from looking at and talking to people in approved studies. Folks in trials like at UW-Madison or Hopkins get synthesized psilocybin in weight calculated doses. These folks universally have similar experiences in terms of intensity and results. Such standardization is not available outside of research protocols. It is also possible you might be developing some "resistance" or receptor down regulation. Regardless you have the volume very low so you have much room to turn it up if you choose.
  2. Pebblesthecorgi

    Alcohol intoxication during cluster

    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.
  3. Pebblesthecorgi

    Clusters stopped after I started taking the pill (estradiol)

    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.
  4. Pebblesthecorgi

    TENS machine as an alternative to GammaCore

    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).
  5. Pebblesthecorgi

    dental work triggers cluster?

    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 ;-)
  6. Pebblesthecorgi

    TENS machine as an alternative to GammaCore

    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
  7. Pebblesthecorgi

    dental work triggers cluster?

    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.
  8. Pebblesthecorgi

    Cluster HA and Tolosa-hunt

    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.
  9. Pebblesthecorgi

    Nortryptiline

    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.
  10. Pebblesthecorgi

    Nortryptiline

    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.
  11. Pebblesthecorgi

    Am I developing CH?

    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
  12. Pebblesthecorgi

    Transfill Valve Recommendations Please?

    search brantonvet or transfill oxygen on ebay to contact and ask
  13. Pebblesthecorgi

    Transfill Valve Recommendations Please?

    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.
  14. Pebblesthecorgi

    I'm finally here.

    welcome
  15. Pebblesthecorgi

    Lithium or Occipital nerve block

    Lithium is one of those two edge sword drugs. It can make you feel pretty crappy even if it works. You need to be on it a while to work and constant lab monitoring is mandatory. This is not a med you screw around with. The overall data a lithium is pretty plus minus and seems often to be a drug of last resort. My thought would be to try the block as long as the physician has reasonable experience (50plus) with the technique. My rationale is that the block is a 1-3 time try and does not have long term side effects. I realize you have been through the mill with this and you should be open to all things. Prioritize the interventions in a way that make sense. Mixing lithium with psychoactive compounds may produce unwanted experiences so great caution is advised. Positive thoughts
  16. Pebblesthecorgi

    Does nasal spray work for you?

    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
  17. Pebblesthecorgi

    Busting with this medication

    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.
  18. Pebblesthecorgi

    Busting with this medication

    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.
  19. Pebblesthecorgi

    Just to put it in perspective

    Personally I am not really into trying to compare pain or trying to "one up" others in the suffering department but this may help some vindicate themselves or at least give perspective when dealing with insensitive partners, colleagues and other riff raff. https://www.mylondon.news/news/health/nhs-pain-most-painful-conditions-15701223?fbclid=IwAR2zqmTNLdESNWJcLH5nM3yZAz6tqEsXQ0ezoQ6Tm2e03khiXiYeTpe-Lkk
  20. Pebblesthecorgi

    Just to put it in perspective

    I have had gout and kidney stones and yes they hurt like all get out. Clusters are in a class of their own. More frequent, unrelenting, narcotics, alcohol and NSAID don't help and there is no understanding of WTF is going on. Unfortunately clusters train you to not look like you are hurting so when something treatable attacks you dont look like you are in pain and delivering care slows
  21. Pebblesthecorgi

    Ketamine test on Dr.John Lilly

    Proselytizing seems to be an ongoing theme with you. I suspicion you are doing this for your own amusement and to be an irritating troll. Most who have feelings on your posts have expressed them. Personally I find them to be inappropriate to the spirit of this forum. Hopefully they will go away but that is not a decision I have to make. At this point not comment would be the best action and I will practice what I preach.
  22. Pebblesthecorgi

    The after effect of Prednisolone

    I hope you achieve some relief. Personally I do not believe a dose pack of prednisolone is genuinely effective in treating active clusters.. Burst doses are helpful for acute inflammation that is readily reversed but the inflammation starting a cluster cascade is more chronic (or at least it seems so). If you choose the steroid route generally one is looking at 60-100 mg/day of a prednisone equivalent for a couple of weeks. Tapering doses in this circumstance are used to avoid agitation from withdrawal. I would regard steroids as a two edged sword. At times they can be life saving but dependence on them can lead to misery. It sounds like you have a shaman type person to guide you and as many of us will attest...it is worth trying anything reasonable and non exploitative. Over the years others have tried this route, unfortunately they met with little success. .
  23. Pebblesthecorgi

    Ketamine test on Dr.John Lilly

    Why do I feel like I do after a Jehovah's Witness or Hari Krishna just knocked?
  24. Pebblesthecorgi

    My chronic CH are the result of a virus

    When suffering the unique, not describable pain that cluster headaches inflict it is natural and normal to grasp for whatever explanation makes sense at the time. We seek to understand lunar cycles, barometric pressures, previous wrongdoings, higher powers, trauma and infectious processes when seeking an explanation. In reality cluster headaches remain elusive in terms of definitive causes and universally effective treatments. Cluster headaches were first described hundreds of years ago before food additives and other entrapments of modern living. Speculation, deduction and personal anecdote dominate discussions among the afflicted. A sequence of biochemical events that result from a virus, parasite or bacteria theoretically may trigger a cascade leading to cluster-like headaches. It is theoretically possible headaches could continued to be triggered after the disease has been treated but this requires a bit of imaginary thinking. Viral encephalopathies are a completely different animal than C dif infections. C dif usually occurs when antibiotics have disturbed the bacterial balance of the gut. Time may tell if there is an infectious disease component to classic cluster headaches but it is more likely the headaches with an identifiable etiology like trauma, infection etc are mimicking clusters. This is an important distinction because in these cases treatment options discussed here are less likely to work. In the end information is good and worth discussing. Who would have thought ulcers would end up being treated as a bacterial disease? Or Lyme disease being a cause of human suffering? Or HPV contributing to certain cancers.
  25. Pebblesthecorgi

    Great news about my O2!

    E tank in car, regulator and mask attached. I reach back to open the tank put on the mask and keep going once I feel the attack in decrescendo
×