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ClusterBusters

Pebblesthecorgi

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About Pebblesthecorgi

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  1. Pebblesthecorgi

    Is your pain on the same side that you hold a phone?

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

    Old imitrex works

    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.
  3. Pebblesthecorgi

    Coronavirus PSA

    I will also point out that this area is a community, no, a family. Family has differing views, opposed perspectives and divergent talents. Family also loves, supports and looks out for each other. I may not like what you are saying but I will defend you right to say it (unless I know it is harmful). Bringing up topics that are in our face and impacts us all is what family does. It’s ok to offer opinion because that is what we do everyday. Each person who knows what a thread is about has the option of not clicking on it. We all need time off of certain topics when the stress mounts. Just like we will all need a break from those in quarantine with us when this is over. Keep you distance family members
  4. Pebblesthecorgi

    Coronavirus PSA

    Well Batch I am not completely on board with all you say however I respect your intent and delivery. All the advice you offer fits into a favorable risk/benefit/cost profile so in the end there is no real downside and a potential positive upside. So long as everyone continues with other recommendations regarding hand-washing, quarantine and social distancing and doesn't treat supplements as a coat of armor. Your approach is reasonable, rationale and well stated. In a worse case situation where your are completely wrong (which I do not believe) little harm can come from adopting your suggestions.
  5. Pebblesthecorgi

    Why is my CH nostril secretion different to my normal secretion?

    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.
  6. Pebblesthecorgi

    Minidoc about Horton's and oxygen coming up on CHAD 2020

    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.
  7. Pebblesthecorgi

    Minidoc about Horton's and oxygen coming up on CHAD 2020

    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
  8. Pebblesthecorgi

    Permanent cure

    Total crap. Reads like a troll. Any surgeon who claims 100% +/- 20% cure is disingenuous and dangerous. Any surgeon who is “the only one’ to offer a procedure to treat a condition should be held in the highest suspicion. If you are for real (doubt) then it’s far more likely your relief was from anesthesia medications than a scalpel. Happy you are pain free but don'r credit a charlatan for your relief. Experience with this particular duck is well documented in this and other forums and it’s not positive. To those who are new to this site please do not get victimized by this BS. You are vulnerable because of this horrible condition don’t become a victim.
  9. Pebblesthecorgi

    Portable oxygen concentrator issued by VA

    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.
  10. 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.
  11. 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.
  12. 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.
  13. 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).
  14. 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 ;-)
  15. 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
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