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BoscoPiko

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Posts posted by BoscoPiko

    What I do when I have nothing to abort the CH. From my own sometimes desperate personal experiences

    in General Board

    Posted

    7 hours ago, Axel_B said:

    After the verapamil

    Just curious if you have tried the rapid release or the ER (extended release)? I am on the ER and many people say that it doesn't help them but the rapid release has been mentioned on the site with pretty good success (not complete cessation but cutting duration and what not). I would definitely start the D3 as it really has positive responses from many on here. 

    • Like 1

    What I do when I have nothing to abort the CH. From my own sometimes desperate personal experiences

    in General Board

    Posted

    1 hour ago, Axel_B said:

    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

     

     

    This sounds awful! I'm so sorry you are dealing with this.. oxygen dosent work for you? Do you have access to it? Have you see a neurologist or headache specialist? You sound like a veteran at this? I'm not only 3 years in and um I hate it. Not a helpful response but any respons helps get more attention.. 

    • Like 3

    Eye pain

    in General Board

    Posted

    I just had this happen to me as well. My eye on my cluster side was tender to the touch and it hurt when I blinked and the outside corner was red. I believe it may have been an internal sty as it never showed up on my upper or lower lid and went away in about a week. 

    • Like 1

    All this pain in the brain and no damage

    in General Board

    Posted

    31 minutes ago, xBoss said:

    I never had an MRI. I def have to get one eventually. The whole rule out other stuff is probably not an issue since I have had this condition for over 23 years but still need to check. I have terrible medicare insurance though. :(

    It couldn't hurt to get one done. I am not sure where you are located but just be careful when they order it up that its "in-network" as the first one I had they sent me to some "out of network" location and I got a bill for $700.00. I hate getting MRI's as I am claustrophobic and feel like I'm being stuffed into a way to small rocket ship...

    All this pain in the brain and no damage

    in General Board

    Posted

    Sure seems plausible that it would cause some sort of damage... I know when I had my last MRI it said something about a T2 something or another and when I asked my neurologist he mentioned it being a small white mass that was basically scar tissue he said it wasent of concern unless I had more show up down the road and that it was common in both CHRs and migrainers.... So to me that seems like damage idk...

    • Like 2

    Changing attack times?

    in General Board

    Posted

    We can't stop this intrusion. We can only learn how to live with un wanted pain.  It's all crooked and I have no clue. We are lucky to see the sun. We are cursed with pain and I don't know why but there must be a reason. I douse myself in the thought that this burden is mine because I'll deal. I would never want anyone I love to deal with this and maybe just maybe it's what keeps them un affected.. who knows.  I am religious and pray every night for this madness to be only on me . We don't know the cure so onwards we must go. 

    • Like 1

    CCH or episodics w ling Cycles, how do you make a living

    in General Board

    Posted

    12 hours ago, Freud said:

    Sorry it made you sad. Just trying to figure out how to make a living and pay fir my meds and have some quality of life.  
     

    on the subject of euthanasia I was reading a story of a guy who was in a country that had euthanasia and he applied fir it if gamma knife didn’t work. There was no follow up on his outcome though.  He had kids and a wife. So sad.  

    It's ok. I suppose I feel bad for anyone with this un-welcome resident of the brain. There are a few states that allow assisted euthanasia but I assume it's a sticky mess to have it approved and even though it has crossed my mind in moments of agony I could never do that to my husband, family and friends. As for employment with CCH that's a tough one, now days with the pandemic working from home is pretty popular and many state agencies will not be going back to the in office way of work as it is more cost effective. You sound like a very bright individual and while it may take you a bit longer to achieve your goal due to CCH you will find a niche that works for you. 

    • Like 5

    CCH or episodics w ling Cycles, how do you make a living

    in General Board

    Posted

    This post made me a bit sad as truthfully... it's been hard to maintain a job. I'm not a sufficient point of contact but I do try and be real. I really liked your  shout out to folks with kids as they are miracles. I chose at a young age not to procreate. I don't know exactly why but babes were just not for me. I chose animals and being true to them has been challenging at times. I'm just happy that I never made another me. Anyhow I'm new to cluster 3 years .. I get brakes.. you do not. So for that my heart hurts. I remember the start of this then getting diagnosed.  I spoke to my husband about euthanasia as I did not feel I could be strong enough. Turns out I underestimated myself. I try to whisper that fact to myself everyday. My situation is different as we own the company in which I work. You will find even with the constant torture you are in that you are STRONG!

    • Like 2

    Some fun after 3 month's of hell

    in General Board

    Posted

    20 hours ago, Juss said:

    Congratulations on being free from attacks. Take the opportunity to enjoy yourself first. Then, concern yourself with the particulars: You may go years without another episode. 

    Others may be capable of advising you; respectfully, I shy away from that. 

    Again, concern yourself with living life and then put your house in order. I had 5 days with only 4 attacks per day and I enjoyed a few dinners in Little Italy. Heck, I went these past 9 days with only one 3 day migraine, and I cooked a lot. 

    Eventually, I got around to the laundry. All of my bills are set up around my disbursement (set it and forget it). If you can afford it, let a fiduciary and accountant handle your finances. I can't, and so I make sure to automate all of my bookkeeping, investing, and bill pay. That is the other trick, delegate every da$@ thing you can (away). Or, what you can trust in another hand. Life is too short to be concerned about the hassles we once had when we had the six-figure lifestyle. It is for me. If you still have investments, property, and hard assets, I understand. It can be easier said than done. 

    Thank you Juss. I do try and delegate most things but we own and operate a small business in which we are the leaders. I go stir crazy if I am doing nothing at work, being a part and doing my part. I love the company shoot I met my husband of 17 years there. I went through a longer than normal cycle (for me anyhow) so I was so happy to have a little fun! Thank you for the nice response!

    How does the Beast return?

    in General Board

    Posted

    For me I start getting random spikes on the CH side of my head. In the start of a new cycle, the random spikes can last for 2-weeks prior to a full blown CH. Some of the days leading into the cycle I may only get one spike a day then others 4 to 5. The spikes feel exactly the same as a full blown CH to me with the exception that they do not come in succession. This last cycle lasted much longer for me than any other and I am not 100% sure why however, I suspect the smoke from the bad Caldor fire may have contributed as well as the fact that I took the triptans a few times after getting 3 or 4 spikes in a row thinking that it was going to go full blown. I am now a bit intimidated to take any medicine during an attack for fear that they will lengthen the cycle.. Still learning about about this monster that has taken up residence in my brain as its only been about three years that I became so lucky:rolleyes:

    High Oxygen Cost $100/tank refill???

    in General Board

    Posted

    Wow bs! This is ludicrous! I'm in CA which is a joke but seriously... I pay $1. 73 per tank an get 6 at a time.. never thought another state could compare to our liberal stance. Anyhow I do pay 26,000 per year to have that coverage as a small business.. maybe do the welding 02?

    • Like 1

    Always Shadowing?

    in General Board

    Posted

    45 minutes ago, Shaun brearley said:

    Organic Ginger root capsules 1100MG off amazon work wonders the beast has come back to hit me bosco but still no shadow since ive been taking these . 2 a day 

    Wow this is a good bit to know. Thank you Shaun!

    Always Shadowing?

    in General Board

    Posted

    I was reading about ginger because I was curious about the health benefits when I came across this little tidbit.

    Gingerol has powerful anti-inflammatory and antioxidant effects, according to research. For instance, it may help reduce oxidative stress, which is the result of having an excess amount of free radicals in the body. 

    Maybe that's the reason it helps with shadows.

    I did try a lemon ginger tea the other day when I felt a bunch of pressure and although I didn't appreciate the taste it did seem to relieve the pressure.   

    • Like 1

    Some fun after 3 month's of hell

    in General Board

    Posted

    4 hours ago, Shaun brearley said:

    Hi bosco , im the same i managed to bust mine with LSD had a few days pain free, thought id shut (not shit ) the beast away but he came back to hit me big time , not panicking about it gonna give busting another go but also now been on D3 for last 3 days . Keep smiling through you will get there as we all will :)

    If only we could shit the beast out!!:D

    • Haha 1

    Changing attack times?

    in General Board

    Posted

    I've never tried to deliberately change attack time (I like routine). However I have noticed a few outside elements that have changed them. Unlike Jon my attacks can be started with stress, for instance getting into an argument about something you feel strongly about with someone you care about or a random night with foul sleep. When in cycle I get multiple attacks a day starting between 10 to 11 am lasts for one to two hours then back from 3 to 4pm. But if I'm stressed they come at a random.  This also happens when not in cycle if induced by the above mentioned..

    • Like 2
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