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Axel_B

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Posts posted by Axel_B

  1. 1 hour ago, Shaun brearley said:

    Have you tried Topiramate as a preventative Axel , not saying its gonna work for you buddy , but ive used it for years know .im episodic and i have missed a couple of cycles ,again im not saying its down to the Topiramate but as i wasn't on any other meds i couldn't put it down to anything else , and of course my neurologist jumped at the chance to credit the Topiramate with me missing a couple of cycles 

    Greetings Shaun, no I have never heard of Topiramate. Just had a little look online, and will mention this to my doctor. After the verapamil and a couple of other pharmaceutical blockers that didn't work, I have become a CH pharmaceutical sceptic, and really have started to lean towards proven alternative methods for a real bust. I will probably go for LSA/ RC seeds or similar treatment in the near future. Have enough for 2 more MM busts and then I will be desperately seeking new alternatives........ 

    • Like 1
  2. On 10/28/2021 at 1:56 AM, CHfather said:

    There might be some thoughts in here that you might want to try.  This is copied from this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

     

    “Treatments” without O2 or other meds (or as supplements to other treatments) 

     

    A lot of people arrive here with nothing effective to treat their CH, either because they have crappy doctors or because they just got diagnosed (or self-diagnosed) or because they have come to believe that they have “tried everything” and “nothing works.” That latter might in fact sometimes be the case, but most often we find that (a) they haven’t actually “tried everything” (such as busting, or D3, or other methods), and/or (b) what they did try was prescribed or delivered ineffectively, as I described above.

    Here are some strategies that help some people abort or prevent attacks (again, I’m not addressing busting here, though of course it must be seriously considered since it’s a highly-effective, low-side-effect method for ending cycles and possibly preventing them).

    Some people get relief from bodywork (massage, chiropractic, craniosacral, etc.) and some from other “alternative” methods such as acupuncture. Most people don’t.

    1. Preventive

    Batch has observed that allergies (even if they aren’t causing allergy symptoms) can cause or ramp up CH, so he recommends Benadryl at 25mg four times a day, including one at bedtime. Other anti-allergy medicines, such as Claritin, seem to help some people.

    Most people with CH have learned that alcohol is a trigger. But there are many other triggers that are not so obvious. See this thread: https://clusterbusters.org/forums/topic/4568-triggers/

    Drinking lots and lots of water seems to help prevent or lessen attacks.

    A ketogenic diet seems to help prevent or lessen attacks.

    Magnesium helps some, taken at 400mg daily, started about a month or so before an anticipated cycle. If taking magnesium for a relatively long time, calcium should be added. It also can help with a typical side effect of verapamil, constipation.

    A licorice root protocol has been helpful for some. You can read about that here: https://clusterbusters.org/forums/topic/941-licorice-root-summary/

    Kudzu root has helped some. Dosages are not clear to me.

    Caution is recommended with all supplements! Know what you’re doing.

    Some have said that deeply massaging the “cluster knot” in their neck helps them.

    2. Abortive

    Caffeine/taurine. For some people, caffeine alone can help to stop an attack or lessen the severity of the attack. Some folks keep strong coffee on hand for that purpose. Some folks use caffeine pills, and some people take taurine pills along with caffeine pills. They take those pills at the first hint of an attack, or a couple of hours before a predictable attack time.

    Many use energy beverages. Because some ingredient in energy beverages in addition to caffeine is believed to help with attacks (believed to be taurine), many people use those. I recommend energy shots (such as 5-Hour Energy) at first sign of an attack. Shots are quick to drink down and they have more caffeine than energy drinks, such as RedBull, that are much larger. Many people say the shots work best for them when they are as cold as possible. For many people, energy shots/drinks don’t keep them up even if they drink them at night. In addition to all the “standard” energy beverages, some people like “V-8+Energy” drinks.

    “Brain freeze.” You can drink ice water through a straw aimed at the roof of your mouth, with the objective of creating “brain freeze,” or hold something cold, such as frozen juice concentrate, against the roof of your mouth.

    Some people find that taking melatonin at bedtime helps (not wise to take both melatonin and Benadryl at night.). Melatonin is depleted in people with CH during their cycles. Some people find that it helps to supplement it. You could start with about 10mg, and go up or down as appropriate. Some people get into the high 20mgs, or even low 30s, before they reach a level that helps. Needless to say, you have to find what works without making you dysfunctionally groggy.

    Several people have reported that DMT is an excellent abortive for them.  You can read more about that here: https://clusterbusters.org/forums/topic/7444-dmt-first-time-finding-an-effective-abortive/

    Feet in very hot bathtub. There’s a theory that this moves blood from your head to other parts of your body. Some people find that putting their hands in very hot water also has an effect on attacks. People have reported that going from feet in a hot bathtub to a cool room and back to the hot bathtub helps the effect. Some people don’t just stand in a very hot bath but will sit or lay in the hot water.

    Ice packs help some people.

    Cold air. One study showed that inhaling cold air was nearly as effective as using oxygen. Air conditioning vents in the home or the car are good for this. If it’s cold outside where you are, you could try that.

    Vigorous exercise. Some people find that vigorous exercise (running; doing jumping jacks, etc.) will stop or slow down a CH attack.

    Lime/baking soda. One fellow said that this helped his attacks: the juice of a lime or two along with a teaspoon of baking soda in a cup of filtered (non-tap) water.

    Sex. Some people have reported that sex stops their attacks. Other people have been amazed that it’s even possible to consider sex during an attack.

    OH WOW !! I woke up to a blinding CH/KIP10 this morning and thought fuck it, before any abortive or other techniques I will run try the HOT WATER TECHNIQUE. Stood in a bucket of hot water for 5 minutes approx, to just below the ankles, and went from a KIP10 to KIP5 within a few minutes. GREAT !! THANKS A BUNCH, great for instantly lowering blood pressure>..... however KIP 5/ Nasty eye pulling shadow is persisting for some hours now since the hot water, but I can manage to function somewhat with KIP5. Thank you CHF for those interesting treatments  /  Will definitely be trying that again .....

    • Like 5
  3. Yes I have tried O2 , for a month. result was aborting from KIP10 to KIP4-6 constant shadows. AARRGGH continuously so stopped the O2 and busted with MM. This was two+ years ago at which time I discovered the MM as a preventative/ longer term bust. Haven't tried the O2 since then. ....

    (..in 2014 my neurologist scripted me Imigran nasal spray as abortive, and verapamil / calcium and beta blockers as preventative, but did not help, on them for more than 12 months with no effect whatsoever)

    Paracetamol and codeine combo work as abortive, also Imigran nasal spray, but take up to an hour, so a lot of the time I just ride out the storm.

     

    Thanks CHF, I have checked the links and info and have recently started D3 with fish oil and ginger as a daily regimen. Also including extra fatty fish and fatty foods and Chinese ginger sweets through the day on top of the vitamins. . Drinking extra ginger tea at night because I fear being woken by a KIP 10 at 2 am :angry:  Going extra on ginger as understand that it lowers blood pressure. Seems to be helping by extending the time between attacks by up to 30 hours, but have to be super vigilant with the triggers

    I will start the melatonin soon to include in daily regimen

    And thanks you for the Benadryl advice. I live on a large property with pets and a dusty shed

     

    Some other interesting techniques with the hot water reducing blood pressure so will have to experiment 

    I have been trying to source RC seeds but no joy :/

     

     

  4. My techniques when I have nothing effective to abort:  

     

    Pacing in an upright position

    ** Breath through open mouth to stop crushing my teeth. Exhale quickly and inhale deeply

    Keep head upright, and shoulders back to allow deep breathing pathways

    Keep body temperature down with cool clothing/ remove jackets /heavy shirts /jeans/scarves etc

    ' Do not lie down', for me the stabbing / pulsing increases 3 to 4 times from an already KIP 10 situation. Staggering difference between standing and lying down. I assume because more blood is flowing to the head !! When standing/pacing the stabbing through the eye is opprox every 20 to 60 seconds, if lying down can be approx every 5 to 15 seconds,  Each stab can be like breaking a bone !! I feel sick to the stomach with pain and nausea ! so STAND and pace

    Keep pacing

    Cold or iced strong coffee and/or red bull / or any other coffee taurine energy drink if available

    Darkest possible glasses to shut out the light so help not to squeeze the eye closed for such long periods

    Tissues if need to blow nose / clear breathing pathways

    Try to eat anything with a high ginger content

    Where possible I remove myself from any social situation in a seperate space, as I can curse loudly and grunt and moan somewhat

    ** Reminder, to keep mouth open for breathing. Don't crush / grind teeth, so important for long term dental health, could eventually grind the molars flat which is costly to fix. If I have to grind to tolerate the pain, chew on matches/toothpicks  or a soft piece of timber or thick silicon type of plastic that you cannot grind through 

    Cold/ice pack, if no cold pack rinse cold water over head or wrap soaked T-shirt /towel over head, and renew with cold water regularly

    If noisy use ear protection, however with biggest/loosest possible fit as ear pads can push painfully on the side of head. Not noise cancelling as frequency is audible during the attack

    Silence and darkness is best

    More coffee and/or red bull/ similar, cold or iced

    More cold packs if available

    More deep breathing  

    The crushing and stabbing feelings are completely agonising so keep pacing and breath and try to meditate through it ' ZEN

    Keep pacing, if I have to sit because have been pacing for an hour or more already, again keeping head upright sit upright, and pace again as soon as possible

    This can last between 1.5 to 3 hours. 

     

    AND REPEAT daily until I can Bust.........

     

    Power Hope Courage  

    Axel_B

     

     

    • Like 2
  5. On 9/16/2021 at 1:38 PM, BoscoPiko said:

    So I suppose we must we must identify as as an object, sex, person, place, thing a majig, an LMNOXHAYYDII OR A P. So.. duh du duh du duh..:

     

    Ice Pick Warriors

     

    Lightning Lovers

     

    Spike Enemies

     

    Eyeball Sweller's 

     

    Eyelid Drooper’s

     

    Hot Pick Troopers

     

    Shock Therapy Snoopers

     

    Pain and Hell Dwellers

     

    Suicide Never Livers

     

    Rainbow Brain Seekers

    Between the the Cluster Sneekers

    Life Lovers

    Strong MFers

    Don't Like that Smellers

     

     

     

    Trigeminal Demon Slayers/

    Hypothalamus Hell Hole/

    What about the scene from 'A Man Called Horse, with Richard Harris:

    When he is hung by hooks pierced through pectoral muscles as a ritual ceremony, but with CH attack the hooks are burning hot, then pushed from the back pf your head, through your eye, and are then turned like fishing hooks and pushed back out through your forehead,  then held there for a few hours while the demon attaches the hooks to an electric current and zaps and pulls on the hooks, Welcome KIP 10, and then repeated every day, and night and day and night Repeat! Repeat Repeat! Repeat !!!!!!! GRrrrrrrrrrrrrrrrr

     

    During the attacks I find if I do not lie down I am better, less blood to the head, with fewer jerks in my head and body convulsions. Also DO NOT touch or massage the skin or massage the bones (especially the Ocular , ) muuuuch better to just pace slowly and breath deeply 

    Stay safe

     

     

     

     

    • Like 1
  6. GOOD DAY

    My cluster headaches started about at age 45 approximately. At the same time approx I had surgery to remove a deep impacted wisdom tooth, right side top jaw. 

    My CH are right side 

    The surgery had me sign a consent form'. Essentially acknowledging risks involved with the surgery. 

    Is there any literature on damage to the trigeminal nerve (opthalmic/mandibular/maxillary) from different facial surgery, either tooth nasal eye area that can cause CH ?

    Many Thanks

    AB

     

  7. Good day. Newbie from Australia 52 years old, suffering with CH going on 7 years.

    I have been referring to this site for over 3 years now and finally decided to join. 

    I read time and time again that whatever works for you is great, find your happy place because CH are what they are, and we are all different 

     

    PSILOCYBIN VS MDMA

    NOT SURE HOW MUCH INFORMATION I CAN DISCLOSE ABOUT MY OWN PERSONAL EXPERIENCE ON THIS FORUM REGARDING PSILOCYBIN AND MDMA?

    Tried everything my neurologist prescribed over 5 year period. Nothing worked.  

    Until micro dosing mushrooms, and later MDMA.

    It wasn't easy to source either of the treatments.

     

    I migrated towards mushrooms firstly because of using Imigran sumatriptan nasal nasal spray to abort the CH, and then listening to a Harvard lecture on mushroom trials for CH.

     

    - Shroom vs MDMA 

    The psilocybin micro dosing 0.05gr. worked mildly but took too long , 7-10 days , and I was still left with persistent ongoing heavy shadows after the period of micro dosing.

    No CH but terrible shadows that kick in at midday and last all day until codeine or ibuprofen or paracetamol or weed. Oxygen didn't work on the shadows. Started to get worried about the amount of paracetamol I was taking and effect on the kidneys and liver, also ibuprofen and effects on the stomach lining, and codeine because no good on heavy equipment or driving. Weed ok but not for work and a bit dopy after weeks on it.

    Then I upped the mushroom dose to full trip dose, essentially to send my hypothalamus into the next orbit ( understanding circadian rhythms and all that stuff). CH gone but only for a few weeks. DONT LIKE THE HEAVY HALLUCINATIONS EITHER

    So for me normal micro dosing of mushrooms which is relatively safe took away the CH, but left me with very nasty shadows that persisted for months.

     

    Then after further research and varying literature, I DECIDED TO TRY MDMA . in controlled environment.

    Full dose. approx 0.2 of a gram maybe a little more depending on prior use / experience (If concerned have someone with you). STAY HYDRATED

    - No hallucinations. Good because then I am in total control. Only something called shudder-vision and some heavy sweats for approx 3 hours

     

    YOU CAN FEEL THE HYPOTHALAMUS SHIFTING/ALTERING DURING THE TREATMENT/ TRIP

    WITHIN 48 HOURS THE HEAD IS CLEAR from one dose. Literally by the hour i could feel my head clearing

    CLUSTER AND SHADOW FREE FOR OVER 6 MONTHS. WOW !!

     

    Just gone through the Australian Summer Solstice 21/12/2020. Circadian rhythm being altered by the seasons, and I feel my shadow returning. Right side of head, I feel my eye being pulled from its socket more and more each day. The jaw pain /mandibular nerve and neck pain is returning with the eye /ocular nerve being dramatically effected as part of the onset of my next CH cycle/period. When I feel the shadow returning I know the CH is not far away. 

     

    I know which treatment I will be going for. 

     

    Again, each to their own

     

    FIND YOUR HAPPY PLACE 

     

    STAY SAFE AND WELL 

    AB

     

     

     

     

     

     

     

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