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jon019

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Everything posted by jon019

  1. jon019

    Best breathing techniques with O2

    .....thank you for the share.....it's delightful to hear when a clusterhead (so their family too!) finds success..... ....always breaks my heart when folks say "O2 doesn't work" when it might be, just might be, a matter of mask +/or flow +/or technique.....and some of them will miss the life changing miracle I know oxygen to be.....because they didn't pursue it..... ....good onya for keeping at it til ya found what works for you.....truly one of the problems with oxygen therapy is that there is no "right" way...beyond the basics, ya gotta find out some stuff on your own (incl right here).....
  2. jon019

    Diagnosis

    ...boy that's an old one I haven't thought about for a long time...tried in the 80's to no effect.....relative of lsd so in theory effective...."supposed" to only be used in intractable cases (as a prevent) where other meds fail, as it has potential very bad side effects (note, with EXTENDED use).....requiring a periodic drug holiday.. ....having not seen any significant reported success with this over the years, I am initially inclined to be dismissive.....but it all depends on where you are on the spectrum that only you know....as Chfather recently pointed out....we are far more likely to see failure stories than success....still, it's a long shot....
  3. jon019

    Vitamin d regime - side effects?

    ...when episodic most of my cycles were eerily consistent...same number, intensity and timing. but on occasion, would get the "one hour wake-ups" all night long ...very odd change in a remarkably consistent pattern. it had to be an outside influence that i only figured out yrs later (greatly influenced by Batch's thoughts)...musta been allergies... ...would suggest a trial of Benadryl (diphenhydramine)....an old style anti histamine that works much better for clusterheads than the newer versions...do a search here for Batch and benadryl for dosage advice and a way better explanation.... ....for reasons i am unaware of O2 worked every time within mins for these wake ups...wasn't always the case "normally" ...where O2 was 75-90% effective.. best jonathan
  4. jon019

    Best breathing techniques with O2

    WOW!...what spiny says!...feels like we been peeking at each others homework! ...the only thing I would add to try is a technique a respiratory therapist (thanks Judy-Bob) once advised that has served me well....called pursed lip breathing...you make your lips real small and forcibly "puff" out air causing back pressure...opens airways, improves oxygenation and CO2 expulsion....google it for a better explanation .... OXYGEN ROCKS!!!!
  5. jon019

    Please help with verapamil quetions

    ...be aware of and prepared for the beast to reappear post steroid taper...while it can break a cycle, the usual purpose is to buy a temporary( 10-14 day) reprieve until a prevent (like verapamil and others) kicks in....
  6. ....the ending about using as a prevent is definitely a "yeah right" moment... ...most of it looks like stuff I've done...tho a LOT more violently and near involuntarily.... ....what does intrigue me is the possibility that a regimented plan involves a thought process and distraction that most definitely could be helpful...the few times I was able to put my mind somewheres else were remarkably successful........it was too hard to replicate consistently
  7. jon019

    Diagnosis

    ...one of the problems with undiagnosed yet treated conditions is how insurance companies will or most likely WON'T cover the treatments or procedures you need...you may be fine with current but run into problems with next...it does sound like your PCP is treating appropriately tho the vison issue sounds more migraine than CH... .....many folks find that immediate release verapamil is superior to extended release.... put that in your consideration file and note that 360 is a somewhat low dose....480 seems to be the sweet spot and some go much higher as needed.... .....what type of O2 mask and flow do you use...a specialized clustermask and 15-25 lpm can make a huge difference....adjustments in body position may help...I found sitting at a 45 degree forward body lean with head down "looking at feet" to be optimal...YMMV best jonathan
  8. jon019

    cluster headaches and exercise

    @Tomas.....get caught w/o tools....you could try hyperventilating (with INTENT)....actually worked for me......once or twice...
  9. @kat_92 hmmmm I've had similar taking verap (or not)....bad combo and docs couldn't figure.....but when taking verapamil (which is really concrete mix) LOTSA water and fiber (metamucil if diet deficient) very helpful.............
  10. ...very nice post...thank you for sharing.....attitude, plan, TOOLS! ....my neuro had same thoughts on verapamil...was over 1000 mg at times.... ....have you considered continuing at a lower dose in between cycles or a ramp up for expected cycle start (if you know your cycles well)... it is possible to titrate dosage in between so you don't have the yoyo of stop and start and the need for prednisolone (IV/taper?) is reduced. you really want to avoid the steroids as much as possible.... as even 1-2 tapers/yr can have significant negative effects (and sometimes don't even work in my experience)... ....Zomig NS as effective for me as Imi with far fewer negatives....abort of last resort if energy drinks + O2 didna work... ...OXYGEN ........... best jonathan
  11. jon019

    cluster headaches and exercise

    Cluster headache survey....x/clusterheadaches.com....also you can search "triggers" at that site and here http://www.clusterheadaches.com/survey/index.html
  12. jon019

    Oxygen from Primary Care?

    ...yeah....what Pebbles' said...appears something else is going on here....the scripts for Imitrex, prednisone and verapamil all indicative that "standard of care" was referenced as you don't just pull those out of thin air if ya don't know CH... ...a headache specialist now your best bet from the med profession...but these folks are booked for months so BE SURE to indicate you are a cluster headache patient currently IN CYCLE...if they know their stuff and are truly patient advocates they will work you in quickly...also be ADAMANTLY willing to fill in for any cancelled appointments. You shouldn't have to convey desperation....but it won't hurt..........
  13. jon019

    Prednisone

    Me too! .....and we won't stop "nagging" you until you find a doc who will prescribe... or you "take up" welding.... It cannot be emphasized enough...it is a LIFE CHANGER...those meds you hate taking are likely to dust in a drawer...I KNOW it saved my sanity and perhaps my life.... and countless others. I can STILL tear up recalling the first time 35 years ago when OXYGEN caused a hit to drain away like water down a tube...and I KNEW I had my life back..........................
  14. jon019

    Benadryl

    ...............advising 4-8 X typical dosage of ANY med is irresponsible.........
  15. jon019

    My first share - My experience

    ...or a bag o' frozen peas.............
  16. jon019

    Started D3 Regimen three days ago

    OXYGEN.....OXYGEN.....OXYGEN..... .......and in case i forgot to mention: OXYGEN!
  17. jon019

    Anyone live in CT or in tri-state area

    YEAH!!!!...and this is at Yale
  18. jon019

    50 yr old Newbie

    ...ok Doc J...you just found out why the ER is usually pointless for a clusterhead....what they needed to do was slap an oxygen mask on your face at 15 lpm or higher ....and a shot of Imitrex. one pill of verapamil and send you on your way is criminal.....guessing that intramuscular was indeed imitrex.... ...verapamil usually takes 10-14 days to show effect...immediate release (vs sustained) reportedly more successful....240 mg/dy on the low side but it's wise to start low and go up if necessary. meaning, don't give up on it if the 240 doesn't work...some of us have gone over 1000 mg/dy. can have an effect on the heart rhythm so an ecg before start as a base line...and any time dosage increased is a wise precaution. keep in mind for later reference that when busting you will not want to be over, i think ,320 mg/dy but others can speak to that far better than I. typical treatment with verapamil includes a prednisone or methylprednisolone IV and or taper to tide you over until the verapamil kicks in..... best jonathan
  19. jon019

    Rebound headaches

    usually in reference to usage of triptans........... ..short answer is experience......we all react differently ...longer is: one of the POTENTIAL side effects of triptan usage is that usage (usually OVER usage) MAY cause REBOUND, an increase in number of headaches or, more reported, decrease in time between h/a's (for that matter, any significant changes in your h/as). We're all different so my experience may be insignificant compared to yours. You can reduce the chance this will happen by limiting the amount/frequency you use (tab, nasal or injection). Oxygen, D3 may result in dusty scripts of same....but you keep a little around 'just in case"....
  20. jon019

    Oxygen from Primary Care?

    "My doctor did prescribe me vials of Imitrex but I had a hard time injecting myself with needles. I see there are a couple of companies that now offer 4mg and 3mg triptan auto-injectors but my neuro said they aren't available in my area or through my insurance. I will look into splitting the shots. " That's actually a WAH-HOO moment as most docs are unaware of the existence of vials...and sometimes they are hard to source....BUT it gives you SO MUCH more control over dosage...the smaller amount of Imi used the lesser chance of side effects and rebounds. Also cheaper in the long run as more doses available per script ...the ONLY negative being the actual injection. Get the smallest insulin needles available and you will barely (if at all) feel the injection. Used to have to do B12 injections...huge needles and deep in muscle....once I got past the initial and daunting task it became a breeze...insulin needles thin and short...you will be joyful at the results.... best jonathan
  21. jon019

    Flonase

    ...Flonase never worked for me for multiple allergies and certainly no benefit re CH...what i did find was that any relieving of the typical nasal congestion pain/pressure during a hit sometimes took the level down a notch and made it easier to breath....for which I was exceedingly grateful.... ....accomplished with Tiger Balm vapors, a Vicks inhaler, or similar....being careful not to inhale any solids... best
  22. Hi michq, ...all the good stuff above!... ....fever and headache two of Covid symptoms...so wise to test...assuming you were negative... ...body temp regulated by the hypothalamus, a wonky one thought to be the center of CH issues, but i do not recall anyone reporting fever..... buckets of sweat yes ....has an MRI/CT scan been proposed?....often used to rule out other issues mimicking CH... ....CHf list took me down memory lane.....have had all but one of those symptoms but initially only 1 for the first yr...the diary idea is really great... ...the advice re a headache specialist really important if this continues....the tylenol #3 a red flag UNLESS the doc is using as diagnostic tool (if it works unlikely to be CH)... best jonathan
  23. jon019

    50 yr old Newbie

    ...i just hafta say...as an x/food scientist....that this is the most appropriately named food extent...it looks, smells, tastes exactly as named... ...back to your regular channel...pardon the crude interruption.....
  24. jon019

    50 yr old Newbie

    Hi Doc J...glad ya found us.. ...read this site and others like your life depended on it...CH aint gonna kill you but that's the attitude ya gotta have.... because we are, in many cases, our own best perhaps only advocate... ...don't assume just any neuro 'knows" CH...many don't...best to find a headache specialist... ...if the Zomiltriptan is oral you're gonna be disappointed....too slow....an injectable or nasal form works much quicker with your goal to use the least amount possible since rebounds and side effects can be considerable. Imitrex comes in 4 or 6 mg statdoses....many find they can get by with only 2 mg (greatly limiting the side effects and rebounds) by way of hacking the dose pen...or better yet , by obtaining in vials and injecting with insulin needles only the amount needed. In my case, Zomig NS 5 mg provided near 100% relief as abort of last resort... with no side effects, rebounds and an 18 hr CH free window....YMMV ...OXYGEN OXYGEN OXYGEN.....saved my sanity, perhaps my life...no side effects, relatively inexpensive, easy to use, way more portable than you may hear. You'll need a non-rebreather mask, 15-25 lpm flow (at least to start...adjust with experience)....and a technique that works for you (hyperventilate, breath and hold, variation of the 2, etc). ...caffeine in the form of energy drinks or VERY strong coffee is an absolute essential tool alone or in conjunction with O2....I have found that using only as an abortive (preventive if you know your cycle timing well) and avoiding at all other times makes it far more effective as the body has not developed a tolerance. various forms of energy drinks available ...you are looking for minimum 100 mg caffeine and 1000 mg taurine per dose (be sure to discuss with neuro, some don't like taurine). Incredible amounts of sugar is daunting so sugar free or the 2 oz 5- hr energy shots preferable...tho low blood sugar was a trigger for me. Taken cold and fast worked best....almost like you are attempting a brain freeze (irony here is that brain freeze is one of the few pains non clusterheads can begin to relate to CH).. ...the vitamin D3 regimen has been successful for many clusterheads...definitely worth a try as safe, inexpensive and beneficial beyond CH.... ...you are, of course, on an alternative medicine site that exists because of the limited success of traditional meds...well worth consideration...for many the only thing that ever worked... ...a headache diary is very helpful in dialing in what your triggers are...and there are many...from smells, to foods, to barometric pressure changes, to changes in routine....and i've seen frequent comments on seeming connection with sleep disturbances (so effectively treating that one may help with your CH).... ....if you got the right attitude, the proper tools and a plan.... the beast is manageable.... ...interesting note on MS...I've been checked multiple times, apparently there are some symptoms shared with CH... regards jonathan pardon my repetitiveness....no intent to step on toes....typed before I saw all the replies and i don't have the energy to edit...
  25. jon019

    Topamax thoughts?

    ...know of a long time professional-patient clusterhead (as in .....we aint docs but we ARE damn professional patients) who had success with topo and minimized side effects by taking prior to bedtime...of course, this makes titrating correct blood serum levels throughout day much more difficult.... ...in my case could not tolerate the "dopiness" so begged the neuro to stop...she apologized for too high a dosage....sorry. i can't remember what it was but would suggest a low start and sloooow increase.....in case my experience not atypical...
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