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jon019

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jon019 last won the day on January 22

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About jon019

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  1. ...good morning Erica...welcome! ...yeah, thanks Ma for sure...diagnosing CH in an adult is a crap shoot..it would seem to be even moreso for a child.... ....you don't mention OXYGEN.....considered the best abortive and NO side effects, especially heart wise. any experience there? wouldn't need the other meds.... ...careful with the Excedrin....some folks find it helps with shadows (naproxen does for me) but is useless for a regular hit, nasty potential stomach side effects and additive to any blood thinners you may be on. methinks the caffeine is the key ..... best jo
  2. ......been doing some form of this dance for near 40 yrs now, and it continues to break my fricken heart that the absolutely true above has changed so little....especially so for O2 ...the best, highest success rate, safest, cheapest abortive.... ...it is to sigh.... and one of the many reasons for ch.com, cb.org, et al. i am forever grateful for the clusterheads and their supporters who DO understand.... and reach out to others in the "family".....if we aren't our own best advocates sometimes it seems we got nothing.....
  3. ...dang drewbie...this sounds like a mess...sorry to hear...just a few thoughts... ....O2 worked for me "most" of the time... and while there were times when i felt like i was experiencing an O2 rebound, it was thankfully rare. my hindsight belief it was having to do with an allergic reaction or system inflammation of some kind... which precipitated the hit and remained active irrespective of the O2 working on the hit at hand.... ...if this is an allergy mediated...a course of benadryl (diphenhydamine) might be in order ...somewhere between 25-100 mg/dy for 7-10 days...worth a try, j
  4. hi Amos...welcome! ...well...yikes...i can't imagine you DON'T have rebounds...so i'll ask first: have you tried/considered alternating different triptan like Zomig nasal spray (separated by 24 hrs)....effective for some.. ....OXYGEN ??!!...if you've tried we need to know how (source/flow/mask/technique)?...life changing in my case.... ....how about the D3 regimen.....cheap, easy, beneficial beyond ch, high success rate...eliminates the other meds... ...then, of course, there is busting..... best jonathan
  5. Episodic ch......Chronic ch....
  6. ......seeds, spores, grow kits....not L or M....
  7. ....took me 8.....keep looking....they be out there......
  8. ...it was the rare cycle when i DID have night/sleep hits...enough of an anomaly that in hindsight there must have been something else going on...like allergies, illness, inflammation.... ...a doc who would say night hits are a determinative symptom in ch diagnosis would also say "women don't get ch".... ...find a new doc.....
  9. ...when i was young and poor and tormented by the fools at the so called health insurance companies, i dreamed of one day being able to afford a "demand valve" which were (and are?) hundreds of dollars...i got along without....but this woulda been nice..... .....am reminded of the $500 Texas Instrument scientific calculator, big and heavy as a brick, i used to make special trips to the store to drool over with the same "some day" thoughts....now they give those away.. ....nicely done Snowflake...a very practical real world solution.....
  10. ...hi Snowflake.... ....many meds have completely different effects the first time (few times/weeks?) compared to what is achieved ongoing. or, once efficacy achieved, there may still be the "slap backs" we are all familiar with. i would caution not to make a final decision on ketamine based on one experience...especially one where you were prepared and able to abort so quickly (in my mind, what's one more hit aborted out of thousands)... ...you know your body best so these are just thoughts....but i would consider myself fortunate to have the option of trying ketamine in what sound
  11. My 3 yr old grandson was finally diagnosed with cluster headaches last month.  They began around his 3rd birthday in August and he continues in the cycle today.  All  medical tests, MRI, CT's etc are normal.  He is seeing a pediatric neurology specialist at UCSF.   His symptoms are text book except he is 3 :-(  We are devastated.  I know we are very early in his treatment, but this is killing all of us.  The thought of giving a 3 yr old a federal schedule 1 drug is almost insane, but....  Have you heard of any representatives of toddlers in this forum?  We really want to talk to someone who has tried alternative treatment on a young child.   

    1. jon019

      jon019

      hi Gonga...that is gut wrenching and i'm sure a helpless feeling. it's bad enough for an adult who at least can have some semblance of understanding of ch (very little at that)....i cannot imagine what it is like for a child...

      ...you have posted this to my personal profile...i would recommend posting to the main board as you are more likely to get responses (suggest/request personal pm's as this is a touchy subject that folks may be more comfortable discussing one on one)...

      ...my knowledge of the alternatives used by folks on this forum is extremely limited and it would be a disservice for me to comment...especially as regards a child...

      ...one other thought...there is a forum called clusterheadaches.com that has been active for 20 yrs (free to join and use though minimally active currently)....there have been occasional discussions of child clusterheads and maybe you can find someone with experience....use the search function also to look for past discussions..

      regards

      jonathan

       

       

    2. Gonga

      Gonga

      Thank You.  My daughter is on here too and she also reached out today to the group.  I have faith this will work.  The shrooms grow in their yard!  There has to be a reason for that right? What concerns me most is the dosing and product control.  I work with clients who fried their brain years ago, and they are so damaged.   He is so beautiful and loving. Thank you again.  

    3. jon019

      jon019

      hi Gonga...

      ...have not seen any posts here re a child...must be on a FB site....here would be better for advice on mushrooms...

      ...re mushrooms, i was a food scientist but have minimal knowledge of psychoactive substances...my initial thoughts:

      ....mushrooms in a yard are HIGHLY unlikely to be the 'right" kind...

      ....even if the right kind, active ingredient content is UNKNOWN/probably unknowable...and dosage is CRITICAL...

      ....the folks here mostly grow their own.....truly the only way to know what you are getting

      ...prep of the raw product is EVERYTHING to its efficacy.....even with all other things being perfect, the wrong prep/storage will destroy the active ingredient....

      ....self awareness is vital to the experience/effct...i don't believe a child can fathom an out of "right' mind experience...

      ...additionally, understanding the experience and adjusting timing/dosage/frequency all require the self awareness a child (or an unprepared adult) does not possess...

      ...i totally understand your frustration and desperation....we clusterheads view our supporters as having it WORSE than us...which makes them golden...

      ...be a shoulder for your daughter/son in law and grand baby....and i would strongly urge you to give the docs wide latitude....no one can look at a 3 yr old with this condition and not do everything in their power to heal..

      best

      jonathan

  12. ...i feel like me and my boy Sherman have entered the "wayback machine"....since i thought this has been general knowledge for decades!? nothing new but a short read. liking the part where they say will spur additional research (ANY research into ch is good research)....but more specifically, if lesser dosages are of sufficient efficacy so as to minimize the well known negative and severe potential side effects of over and/or extended use.... mr. peabody 'Clear Evidence' Oral Steroid Effective for 'Suicide Headache' (medscape.com)
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