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Pebblesthecorgi last won the day on July 14

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About Pebblesthecorgi

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  1. Pebblesthecorgi

    Sleep and Cluster

    Thanks for the video. My observations 1) Sleep is truly affected by clusters (or do cluster affect sleep) 2) We have much to learn about the relationship of sleep stages to precipitating clusters 3) Yes it is scary to sleep during cluster cycle but avoiding sleep makes it worse 4) I am getting very old if that "kid" has 2 post doc degrees
  2. Pebblesthecorgi

    more positive press

    https://www.scientificamerican.com/article/the-power-of-psychedelics/ more positive news in a reputable publication
  3. Pebblesthecorgi

    Meds, Dosing, and Schedule?

    Take the prednisone all at once as a single dose.it can be hard on the tummy so take something like Prilosec with it. If you usually get hit at night then take it at bedtime. It can be agitating for some folks so the first few nights could be restless. If you get hit during the day take it in the morning. Steroids can be helpful but you can have some mood swings but usually not with your regimen. Verapamil should be spaced out evenly. The magnesium should be ok anytime. The Zoloft is good how you take it and should not hinder the regimen you are on but if you ever try and bust you may need to get off it for a while. Don’t do that unless you have a talk with you provider. Wishing you good results.
  4. Pebblesthecorgi

    SSRIs helping with CH ??

    The SDSRI’s as a group are pretty unhelpful in treating clusters and serve as “blockers” for individuals choosing to try non conventional therapies. Given that you are already being treated for two other conditions it might be best to discuss with your provider dose adjustments of the lexapro as it seems to be helping.
  5. Pebblesthecorgi

    Another sleepless night

    It truly sucks when you feel at wits end. Before things stabilized for me everything I tried was undisciplined and all over the place. Desperation makes you do things that are nonsensical cause you have to do something. If you are going to go into the neuro looking at conventional cares You might try for a CGRP inhibitor (at the correct dose for clusters) and O2. If you have been treatment resistant to D3 and other modalities its likely verapamil will be a disappointment. Busting is a scary notion but there is a lot to read and familiarize yourself with to reduce a potential unpleasant experience. Seeds would be another thing to consider. Psilocybin is being studied worldwide right now for treatment resistant depression and there is lots of good info about protocols and success. There are counselors trained in using the modalities together. Easier to find would be a ketamine clinic but because these are widely available please take care in selecting a provider so you get the needed post exposure integration. Keep at it and try to keep succinct notes so when you do talk to a provider you are not directed down a path you already have been.
  6. Pebblesthecorgi

    Zolmitriptan AM/PM

    The triptan medications are labeled not for prevention but my experience agrees with yours....taking an oral or long acting version will allow you to get sleep. There is a trade off though...you are likely to start getting rebound headaches from using the triptan regularly. You may also “time shift” the occurrence of the headache. Triptan use can also extend a cycle. Being awaken with a full blown cluster headache is very characteristic of cluster headaches and often how they initially present. Hopefully you can get some O2 to abort and lim it reliance on triptans. Sooner or later you will pay a price for daily use and its not pretty.
  7. Pebblesthecorgi


    Interesting reading about it. Since it only has limited availability it will be harder to get other perspectives. It has been around since 1968 so there must be some track record. A quick englished based literature search wasn’t helpful. Since it is basically a calcium channel blocker with antihistamine properties I would suspicion it falls in the same success profile as most calcium channel blockers. Sounds like you are at a disadvantage because you don’t get to see the same person or someone who actually has meaningful experience treating cluster headaches. Wish the best for you.
  8. Pebblesthecorgi


    It sounds like you would benefit form another opinion regarding your diagnosis. There is no competent physician who would be offended if you sought out an opinion. You have had imaging and have had this for a long time so it's unlikely something like a tumor. Cluster headaches are a diagnosis of exclusion which basically means if the symptoms fit and nothing else is found; you have cluster headaches. Personally I believe if you have the classic symptoms and O2 used properly knocks out an attack: diagnosis is straightforward. The diagnosis and treatment of cluster headaches is pretty unique so a proper diagnosis is appropriate. There is a whole constellation of severe headache called trigeminal autonomic cephalgia (TAC) many of which have a nuance treatment unique to that type of headache. You are in an awkward spot if the O2 advise from @jon019 doesnt' abort an attack I would pursue another opinion.
  9. Pebblesthecorgi

    Please help with verapamil quetions

    Verapamil is a difficult drug in any context. As a calcium channel blocker it was originally used as an anti-hypertensive and in some irregular heart rhythms. It was never a very good blood pressure medication and the number of abnormal rhythms it contributed to were worse that those it was intended to treat. When Beta blockers gained popularity in preventing migraines calcium channel blockers were also tried but with less success. Verapamil shows up as the number one phama drug to prevent attacks but that recommendation has surprisingly little evidence to support its use and effectiveness. {I have attached a link to a(nice article at the bottom of this post) My personal experience was taking 1200mg a day and getting so constipated even if it worked I'm not sure it would have been worth it. Over the years one gets a general feel how fellow cluster heads are doing with conventional treatment. This of course is tempered by the reality most folks enjoying successful treatment don't stick around or follow up. I never ever get a YES this stuff works impression. Doses are often too small, the length of use wasnt enough or the side effects not tolerated. My opinion is it is very much a something to try drug but won't be too hopeful. Steroids can be very helpful but those too are often under-dosed , taken long enough or transitioned to something that might give long term relief. All these things are super hard because no doctor who doesn't deal with this curse can appreciate the exquisite, intense and debilitating pain this condition offers. Since for most the attacks are episodic there is never a deliberate treatment plan worked out. In the end its up to the individual to muster all their resources and direct care with an understanding caregiver to deal with this horror. https://americanheadachesociety.org/news/verapamil-cluster-headache/
  10. Pebblesthecorgi

    Vitamin B complex

    Another reason it is given as a shot is because many folks (especially older) have trouble absorbing dietary B12 through he gut.
  11. Pebblesthecorgi

    Is it Cluster Headache - need help

    Sounds consistent with cluster headaches more than most other things. The only real inconsistency is when you are getting hit. Classic attacks often awake one from a sleep with the time being fairly consistent. Non steroidal like ibuprofen usually don’t do squat so the relief you perceive might be coincidental. Just because oxygen is difficult to get doesn’t mean its not worth aggressively trying. The exception would be government provided insurance (Medicaid/Medicare) where you are certainly out of luck. It’s worth pursuing welding O2 otherwise. If you can abort a headache with O2 that sort of cinches the diagnosis, very rarely other headache conditions respond to oxygen. In cluster headache folks it is very reliable. In the end you must be the master of your treatment. Research options and partner with your neuro to direct your own care. You bear the burden of this godless condition so taking as much charge as you can is important. Topamax is a very plus minus drug in my experience. Personally the side effects were too much for me to bear. It seems a rare soul who gets enough relief to accept taking it especially if there are other more palatable treatments out there. CHFather is right on in directing you to summary info of what the collective has learned over time. Personally the most frequent abortive are Oxygen, O2, oxygen followed by chug a lug energy drinks and high dose steroids (60-100mg a day for a couple of weeks). Imitrex works but there is a price to pay: rebound headaches and extended cycle. Prevention is a mixed bag. The reports on D3 are encouraging and there is little downside. Quercetin has been recently brought up up very little data, but , little downside. Most of the pharma solutions for prevention verapamil, topamax, depakote etc are more minus than plus, individual responses are not reliable. THe CGRP inhibitors show promise (at correct dose) but for me the jury is still out. Busting seems to work and has a long track record in this community. This is a personal choice and I would advise careful scrutiny before deciding its worth trying. Mushrooms have saved many lives. I am not sure how much additional work up you need. Since you have had this condition a couple of decades the chance of a scan being helpful approaches zero. Clusters are a diagnosis of exclusion and time has excluded most other diagnosis. The cost of an MRI buys a lot of oxygen. Welcome and stay in charge of your life.
  12. Pebblesthecorgi

    Relieving the Pain of Cluster Headaches (YouTube)

    Thank you for sharing. That was a well done rational presentation with excellent flow. Please keep us informed of the organizations progress with government. Finland is a great crucible for this because they have a highly educated population, are small enough to effect change and have a progressive medical system. Many thanks
  13. Pebblesthecorgi

    Demand valves

    Demand valves can potentially save O2 when you are using high flow. Since the O2 is only supplied when you inhale and not continuously dispenses at whatever rate you select. Batch has given his perspective on this a couple of times. There are demand valves available at times on eBay if you are interested. Personally I don’t like it and prefer the continuous flow however I do use it when I have a small cylinder and want to save volume. Remember breathing technique is as important as flow rate as you want to hyperventilate to get rid of CO2. Thankfully its a rare time these days I get hit thanks to fungi.
  14. Pebblesthecorgi

    Oxygen from Primary Care?

    Intellectually lazy is as kind as anyone could be when referring to that lazy sh*t PCP. There are many resources out there which physicians refer to to direct treatment. In the USA the most commonly used reference for vetted quick answers is Up-To-Date. That source clearly identifies high flow oxygen for the treatment of cluster headache attacks. It’s not a plus/minus equivocal suggestion, it is a strong endorsement based on evidence. Also there is some confusion between PCP’s and Specialists. Often times (at least in the USA) the intent of a referral to a specialist is to get a proper diagnosis and the PCP does the actual plan implementation. In reality because they can charge or the PCP is not able specialists will manage things. You need to either great a new PCP or lodge a complaint regarding the lack of responsiveness. The other possibility is that you are in a managed care environment and the Doc is an employee who is chastised every time money is spent and they automatically reject anything with potential cost. Most of us cluster heads end up managing our own condition anyway and just need a doctor for a few scripts. Imitrex is not sustainable, oxygen is...shrooms often are miraculous. Hang in there
  15. Pebblesthecorgi

    LSD clinical trial

    Thank you chfather. I read about this company. Going to do some more digging. Be interesting to see who,is behind it.