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jon019

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Everything posted by jon019

  1. Personally I can't watch these....about 20 yrs ago i saw one of ClusterChuck and it still haunts me. Can see the benefit of showing to the "doubters"......... Best jon
  2. ...thank you brother..... ...what I find most interesting...besides your post...is that another clusterhead and I have posted on ch.com that before/during/or after a hit... we craved a DARK room...just sitting and thinking....a cigarette was a reward I used "surviving". The smoking part may be inconsequential...and an oncologist made sure it was former...the "light" part... .hmmmmmmm ......... Best Jon
  3. ...I did not mean to sound so cold hearted about your friend....information like this could be of benefit to her AND others...and thank you for the post. I wish I had considered light effects sooner in my own ch career.... Best Jon
  4. ...not sure I follow....but ch pain is the worst I have ever experienced....and while I have prayed to pass out countless times...have never had the relief that would provide......and even then....it would probably prove temporary....
  5. hmmm...wow.....light affects circadian rhythm...circadian rhythm is hypothalamus driven...ch is hypothalamus caused/related/connected.....perhaps this person is more light sensitive than others...in which case...COOL...a possible mitigater for others.......... Best Jon
  6. ...very interesting question...I've heard of folks getting hit "harder" in different locations than home...or the opposite...but that might just be disruption in schedule...which was always a trigger for me.... ...I doubt there is a "best" place...and even if there was...I like where I am...I just coped...most clusterheads do Best Jon
  7. ...there is NOTHING...in my experience (broken bones, falls, cuts)... that compares in ANY way to a bad cluster hit....THAT pain is truly indescribable. Sure other stuff hurts...but if I think about it.. I could tell ya exactly what a broken hip hurts like, or a kidney stone, or or or...NOT ch.....
  8. ...personaly I would record the pain level as perceived at the time...related to previous hits ...there are remarkable stories of clusterheads reporting on pain OTHER than CH... which to "normal" folks would be excruciating....but to a clusterhead is "meh"...see women and childbirth... ...which is to say we have an altered impression and a pain tolerance uncomprehended in the medical profession...one of the few benefits(?) of CH.... Best Jon
  9. Hi John See this............... https://clusterbusters.org/forums/topic/4568-triggers/
  10. Hi Gabby...welcome.... "Typical" is...prednisone taper while starting a verapamil preventive. Not at all uncommon for hits to return after the end of pred taper (I had luck once with prednisolone IV then taper (stronger version of pred). BUT...further pred dosing unwise due to potential AWFUL side effects with extended use.... I'd go for an upping of the verapamil dosing.....as 480 mg/dy is the sweet spot for many clusterheads.....and some go even higher... (I used 960-1040/dy when in high cycle). Wise to do an ECG before and during upping of dosage to check for potential heart rhythm anomalies. Check on the version you are taking... SR Verapamil is sustained release...many...not all report immediate release better. Try to time dosages to just prior to expected hit times.... Never heard of onzetra...perhaps others can comment. I had EXCELLENT results from 5 mg Zomig nasal spray...99% effective for breakthrough hits if oxygen and energy drinks did not abort... Best Jon
  11. Hi....I would love to see these....and would truly appreciate an option other than FB. Whether it's age, tech disability, impatience, obstinance, knuckleheadness, knotheadness, or WHATEVER....dunno...I cannot fathom/handle/operate/navigate/understand/embrace/FB...it.just.doesn't.work.for.me.... one size does NOT fit all.....
  12. Also , If I could instantly lower BP , shouldn't the attack go away as well? ...the mechanism of pain is not related to BP....not in any anecdotal or scientific report I have ever seen....... If we assume that you get CH and then instantly your blood pressure rises. When pain goes down , so does the blood pressure but not as quickly maybe with 5-10min delay compering with onset. ...an argument against your theory....ch first?... Is there some trick that anybody is using so get the BP down quickly? Nope.....there's a whole med/pharm industry based on lowering bp...they haven't figured out "quick" yet... I assume that 100% O2 gets it down , also drinking a lot of water and possibly your feet in hot water. ALL excellent options...with many reports of success... I can usually abort it with O2, drinking a lot of water, E-drinks and feet of hot water. Many times it just comes back hours later, where im not as successful to get my BP down. It's called cluster headache for a reason...it's gonna come back regardless. I had good success for 12-18 hr relief with Zomig nasal spray (5 mg).... Is there maybe some other trick to instantly lower BP. I'd like to try it , before I go on verapamil or D3 regiment. thanks Twere I you...I'd give the D3 a really good run before I resorted to verapamil...which is "relatively benign" for many...but major side effects for more than a few...you won't get that with D3. Don't look for "tricks"... ​folks been trying that for years.....and anyone who tells you there IS one.....is a source of amusement...... Not arguing John...I will not annoy further......... Best Jon
  13. ....if that's the case.... you'd be the first I've heard of in 30+ yrs...BUT....one of the primary prevents in the ch battle is verapamil. tis a BP med which relaxes blood vessel walls and lowers bp....coincidentally and fortuitously reduces or eliminates ch for many. the sweet spot as reported by clusterheads is 480 mg/dy in divided doses. some...including myself... need go higher...like 960-1040/dy. might be your solution. find a good headache specialist to work out best dosages for YOU. best to try regular release vs extended. don't let 'em try Inderal...another bp med with some benefit for migraine but poor results for ch........................... best jon ps I will repeat myself at the risk of being annoying....careful with otc pain relievers...it's a risky cost:benefit ratio
  14. Hi John, Pain, fear, adrenaline, "dancing", heavy breathing, et al all increase BP and pulse. I too used to measure my BP during or after hits. Eventually I stopped because it was informing me of nothing more than something else to worry about. There is nothing you can do about it EXCEPT prevent/abort the hit in the first place...... And oh....I'd lose the Excedrin for anything more than a shadow...it'll tear up your stomach for minimal benefit. Best Jon
  15. Welcome Nordberg..... coupla questions... Have you tried a full pill before bed as a prevent? Many have...it apparently doesn't work....but wondering? Never having used the pill or researched is there the possibility of crushing the pill for oral admin...and/or perhaps sub lingually (probably tastes like used Redbull)...but just wondering? That pre-bed snort is curious.....since there is no need for fast acting at that time...and the half life of suma is short... I would expect this is somewhat wasted...of course...depending on experience with q#1. Snorting has been discussed on another forum....but from my recollection... the subject broached by folk who sent up alarm bells that made one immediately skeptical. Your reasoned post does not....I just need to point out that using a med in a way not offered, studied, condoned by the manufacturer(like maybe crushing like I said above )...while not necessarily/automatically "wrong"...is not something I would undertake lightly....and I urge folks new to clusterheadache to be extremely cautious in going "off instruction" with ANY med. I'd talk to a pharmacist...... And a couple other comments...night time hits...for me...were most amenable to O2...I didn't even have to fully wake up....which is actually an excellent strategy since one can get a bit of sleep between the multiples (I used to get) at night. I'd try again....minimum 15 lpm with non rebreather and hyperventilating...it's cheap and side effect free....just sayin'.... Good thought on water...tho it never made a dang bit of difference for my ch...many report it does...and it prevents lots of other issues.... which I unfortunately learned the hard way.... Best Jon
  16. Hello.....what he said ^^ ...especially re the verapamil....240 is a pointless dose. Close to the typical starting dosage then you ramp up until efficacy found or side effects preclude.....at times I used over 1000 mg/dy (with minimal side effects)....480 has been reported as the clusterhead "sweetspot...as has been stated multiple times...clusterheads can tolerate much larger doses than are used for blood pressure treatment....I don't know why...and don't care...but a lot of GP's are scared to go there.. ....and I'd get a different specialist....prednisone in ch treatment is ONLY for cycle breaks (1-2 week tapers)....you are wise to fear the long term effects. It doesn't always work either......my neuro was fond of methylprednisolone (I think a more potent version of prednisone)...she would do an IV drip then tablet taper.It worked once to entirely break and stop a cycle....it was like a miracle...and it was only the first time that it worked. After 1 or 2 more complete failures "we" decided...no more.... Best Jon
  17. Yup...correct....I don't even know what nitric oxide is....twas a spelling error... Haven't done an archive search of ch.com...so don't actually know where I've seen CH reports re N20...tho I've seen lit...perhaps the old National Headache Foundation (formerly N Migraine F) newsletter...which in 1985 was my bible...first to say O2!! to me. Very few folks ever mention that august publication...remarkable for its time. I finally tossed 15 yrs worth only last yr...it was a parting with a dear friend.... Further N20...then I'll leave the horse lay w/o more pounding. Have never personally experienced as have never been treated with. However, several yrs ago in pre-surgery discussion with anesthesiologist I said "oh!" when perusing the list of meds to be used. Told her I have CH...and she said..."well then, we'll leave out the nitrous". I was surprised..."how did you know?" She said "I did my residency in Neurology...I know that's a trigger".... Best Jon
  18. Yo...CHF...gonna have to partially disagree...'laughing gas" is nitric oxide.... which is a vasodilator like many other nitrate compounds ...and has been reported by clusterheads as a trigger (seen lit re same). new to me that epinephrine is a trigger but a quick google shows vasodilation also.... I really like this idea of a trigger list.....would have been especially helpful when I was new to CH....rather than the HARD way I mostly had to learn. Most any clusterhead with more than a few yrs in knows what to avoid...although I learned something new re epi....and I have an epi-pen for another condition (Never had to use......wheeeeew) I see the list as most beneficial for new "dancers" BUT we must be careful to state at start, end, and somewhere in the middle that these are "typical" triggers....and how each person is affected or not can be VERY diferent....so find out for yourself w/o automatically eliminating everything on the list. Which is also why a headache journal is so important..."geez, I got blasted last night...what was I doing or eating in the hrs before?" (e.g. chips with MSG...which I would find on the list). Or something like...it's late...I'm tired and can't sleep...I hope the above made sense....................... Best Jon
  19. Darcy....do NOT mix triptans brother...they do not play well together.....and well as doubling up on the same one.... ...was it the 5 mg nasal spray zomig? boy that worked good for me w/o the ookiness of imitrex injects....
  20. Hola...I agree with THMH...break into sections or this list could get really unwieldy. That said....I'll make it a bit more. MSG is a potent trigger for many...but it hides in our food supply under many guises. I remember a friend telling me how she NEVER would eat MSG cuz it was NASTY stuff (not really, just some folks are sensitive). I asked to see the bag of chips she was eating from...sure enuff: hydrolyzed vegetable protein .....thas MSG folks...see list. And I'd add a caution to research glutamic acid content of foods...same action in the body as MSG. Examples of higher levels include anchovies, tomatoes and mushrooms........ Other Names for MSG: The A to Z Guide MSG Accent Autolyzed Plant Protein Autolyzed Yeast Aginomoto Calcium Caseinate Citric Acid (when processed from corn) Gelatin Glutamate Glutamic Acid Hydrolized Plant Protein (HPP) Hydrolized Vegetable Protein (HVP) Monopotassium Glutamate Monosodium Glutamate MSG Natural Flavoring Natural Meat Tenderizer Sodium Caseinate Senomyx (wheat extract labeled as artificial flavor) Textured Protein Yeast Food or Nutrient Yeast Extract
  21. Interesting CHF....a good idea methinks...... I would add...most based on personal experience: LOW blood sugar Aspartame (artificial sweetener....vasoactive like MSG...,other A.S. do not seem same...but that's me) Nitrous oxide (dental anesthesia...never experienced personally)...but an enlightened anesthesiologist I met agreed it was a trigger for some clusterheads Gum chewing...or excessive jaw movements... Caffeine at the WRONG time (my belief that the body maintains stasis when "insulted" continuously....so best to withhold until needed for maximum effect) POST stress (e.g. home from work) Welding fumes (zinc welding fumes was an INSTANT hit for me) Routine changes (eating, sleeping, exercise, etc) I'm sure more...will think on it.... Best Jon
  22. Hi Darcy...welcome! 61 here too!...it's good number...yes? Can't answer re the psychoactives (this site can help)... BUT...for the O2 are you using a non-rebreather mask at 15 lpm or higher at FIRST sign of a hit?...tis a beaut...........breath HARD and FAST...til you're dizzy really... I'm NOT impressed with your GP...the specialist sounds better but what else does he/she say besides "go there and psychoactives (which is enlightened) "? Pills are worthless for a hit abort...it's too slow therefore too late. Can you get injections of Imitrex or Zomig nasal spray (my last resort savior). Drop the Amitriptyline...tis an OLD migraine med with POOR success for CH....and depressing side effects... Prednisone should be used for a 1-2 week taper (high to low daily doses) ONLY...while a prevent (like verapamil) takes effect....it's long term effects are NASTY! 240 mg of Verapamil WAY too low...most find the sweet spot at 480 or higher....I used 960-1020 mg/dy... Search the Vitamin D3 regimen here and at clusterheadaches.com...great success...minimal side effects...inexpensive.. Best Jon
  23. ...thank you Brother...'tis an interesting journey...I abide...and hope the same for ALL in the family................
  24. ...thank you for the link...newish to the site and appreciate the "lookee here"... ...my apologies for lack of detail...the monoclonal antibody I refer is rituxan (aka rituximab)... ...and please note...as indicated in the link...there ARE side effects (consequences) of any med... I referred a potential positive....PLEASE folks...note that it aint necessarily all sweet pigs and roses. In my case...my immunity system is compromised beyond which I was warned or expected...it IS a challenge.... You pays yur money and yas takes yur chances...I'm alive...hard to complain...but just be aware... no sucha thing as: "FREE" Best Jon
  25. MOST interesting...thank you for posting this CHfather! several comments: I think the abstract is sufficient for now.... Puzzled by the "genetic component" reference. Migraine yes...but have seen very little in the past 30+ yrs that there is any more than a "small/possible?" connection for CH.... Now what really stood out to me....having undergone chemotherapy with 2 meds for 2 1/2 yrs...ONE of which was a monoclonal antibody...I can report that going in I was a 7 yr chronic clusterhead (after 23 yrs of episodic)... in a cycle (yes, lows and highs within the chronic). Since then...ending 9 mos ago...I have been in a decidedly low cycle (which I tremble saying...tempting fate doncha know)...and "suffering" mostly shadows with only the rare hit. I TOTALLY understand this is an anecdotal....and we supposedly can age out of this nightmare...but it was danged coincidental...and this is the FIRST I've heard of research using monoclonal antibodies for CH treatment....can't wait to hear more...as there will be more chemo in the future.... and I'd like to think two birds with one barf........... Best Jon
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