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introducing my friend who just registered for the board

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hello all,

i want to introduce my dear friend @spikeinthehead. he just registered yesterday; i've sent him the url to the readme banner, ahem, @CHfather. i know he'll develop his own connections, but i want to specifically introduce @Brain on fire, @spiny @Freud @dmlonghorn @ThatHurtsMyHead. Also, @Batch, perhaps you could pm him with the link to the D-3 regimen.

thank you all!

lux

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Greetings Spike! Light has brought you to the right place! We are more than happy to help you try to get this under control. Give us a bit of back ground on your Ch. What are you taking now? That sort of stuff is a huge help to our members who will reach out to help you.

ATB!

And thanks Light!

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Hello and thank you for the “ greetings”. Actually this is a note from his fiancé Karen .   I am terribly worried about him and of course feel so helpless. I’ve been reading this website for the past few weeks for any information to help him.
Briefly - he is 51 and started these in 2017 thinking mabe he had a bad sinus infection - went to dr. Who prescribed antibiotics which of course did not help.  These came on during the night - every night ( almost ) for close to 6 weeks or more.  Finally given sumatriptan and topiramate which really did not do too much except make him feel “ out of it “ .   Butalbital actually seemed to help more than anything , if taken at onset.

Did not have any headaches in 2018 now they have come back - approx. 5 weeks ago and with a vengeance.  Every day/ night - he gets the sensation in his teeth and right away it hits - too often it goes into a full blown attack , where pain is so intense he can not sit still or bear to be touched and he literally can not stand it ( I know you all are well aware of how he feels )  These last a few hours - we’ve tried everything. Butabital, tension  headache aspirin- espresso  ( just started which perhaps helps a bit) - Valium when he’s so agitated and can’t sleep after al the pain ( this usually can help him sleep some )——- trying the different vitamins  and melatonin ( think this may help a small bit )  - this is all left sided with the droopy eye , congestion, shadows ....Please excuse this long drawn out post —- I am so worried and anxious — he is extremely depressed at this point - he never knows when they will come and therefore is afraid to go to work in case one hits , no way he can drive with it.  We don’t know what to do —— I am writing because he feels hopeless and really won’t look at this site and I am looking anywhere for help and sick with worry ————- thank you for “ listening” 

Karen 

 

 

 

 

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Karen, he needs to get oxygen.  Without insurance, that probably means welding oxygen.  (He could get a prescription for medical O2 if he sees a doctor and then try to pay for it out of pocket.)  Here's info about the welding route: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/     O2 is really the highest priority, and he/you should move heaven and earth to make it happen.  A welding-based system can be created in a matter of a few days.

If espresso helps, an energy shot such as 5-Hour Energy will be even better.  Much more caffeine in it, and some other ingredients that are believed to also help.

The D3 regimen won't solve his problem right now, but he should start it right now.  The whole thing.

If the sumatriptan was in pill form, then no, it's not gonna help.  Injectable sumatriptan, or the triptan nasal spray will usually stop attacks.

He should consider ordering some rivea corymbose seeds for busting. Legal to buy and possess. This file includes basic information about busting (the reason this site exists) and a whole bunch of other non-busting stuff.  Throwing things at it like he's doing now is not a sound approach -- particularly considering the things that are being thrown.  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Bless you for being there!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  I am a supporter myself, so I have this advice -- Don't let him talk you out of doing whatever you are willing to do to change this situation.  Sometimes people with CH won't accept help in the way they should.  Lots of understandable reasons why that sometimes happens, not really worth discussing here.  You have to persist.  I'm not talking about during an attack -- you have to listen to what he wants then, agonizing though it is.  But in terms of getting what he needs, whether that's O2 or vitamins or even seeds, you don't need to have permission.  In my opinion.

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Hi Karen, and Spike, and Spike's friend 

The good news is, you're in the right place. There are solutions out there and ways to reduce this horrid condition, so don't lose hope. I went from 2-5 hits a day to virtually none because of what I learned on this forum and thanks to the wonderful people here.

I always love it with friends, family and loved ones reach out to help. I often think it's almost harder on the people we love, as they can only stand by and watch. One of the things my best friend used to do, that really helped, was to bring me a couple glasses of cold water as my attacks came to an end. I would always be desperately thirsty but with little energy left to get a drink. During the attack, she was smart enough to just leave me alone in my room and let me get on with it. I didn't need an audience and she didn't need to watch. But she'd check in on me, and then bring me water and a blank when needed. 

I was on Topiramate for about 18 months, and my clusters went from a few times a week to 2-5 a day, every 2-3 days. I've spoken to others as well where Topiramate made their clusters worse, so I'm not a fan of it. But, that's just my personal experience.

I used to worry about attacks at work too, but eventually figured out that my attacks were very low-stress driven. When my stress levels dropped is when I'd get attacked, and many people report the same. So in the evening when I sat down to watch a film, or on the weekends when I was chilling out or gaming, that's when I'd get hit. Going to work raised my stress just a little, just enough, to keep the bad attacks away. I'd get a few minor ones from time to time, but nothing bad. On the drive home, though, I'd sometimes get hit and would have to pull over. 

Just to give your partner a bit of hope. The day I signed up to this site was the day I also penciled in a date in my calendar to commit suicide. LITERALLY! I had my calendar open, and decided to give myself one year to find a solution or I'd exit planet Earth. As soon as I picked a date to do the deed, I remembered someone once told me about this group that used alternative meds to stop clusters. At the time I'd told myself I'd only go there as a last resort, so when I was planning my own death, I figured that meant I was ready. So I put my calendar down and created my profile. That on 30 Nov 2011, and I'm still here. 

The things you find on this forum ACTUALLY WORK. In 2011 I had 257 cluster attacks - and those were the full-blown, 1-3 hour attacks that made me cry like a baby. This year, so far, I've had 26. 26 attacks so mild and inconsequential I barely notice them. Each attack might last 1-5 minutes, with 2 or 3 a year lasting 15-30 minutes. But the pain is mild. It's enough that I'll stop what I'm doing, breath deeply and hold my forehead. Then it stops and I go back to what I was doing. 

Mox

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Thank you for responding to my post.  As I have told him , it is somewhat reassuring to know there are others who are going through this . We keep saying “ this will not last” — enjoying the moments when he is not in pain . He is going to try to get a script for oxygen , hoping a general doctor may prescribe .  During his attacks he appreciates me being with him - and I want to be - if I can give comfort that is .  Lately I softly rub his neck which seems to help a bit - and a cold rag or pack at back of his neck when he can tolerate. I am hoping he looks at this site today and mabe gains At least he slept last night without one! I wish that meant they were coming—— thanks again .
Karen
 

P

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Moxie - I appreciate your honesty about ending your life due to the pain —— unfort. this sounds all too familiar. Unless if someone has seen a loved one go through this or in fact had the headaches themselves , they truly have no idea. What a blessing this site has been for you ! 


CHFather - I appreciate all the information given . He is willing to try anything at this point - Busting if necessary ( however I have to admit this makes me uncomfortable ) I suppose I am all too use to the world of pharmaceuticals - even knowing how dangerous they can be.  At this age however I realize there are alternatives.

kindly , Karen 

 

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Hey Karen. We tend to turn our back on pharma when it does not work - repeatedly. If it were working, there would be little use for this site to be here. He may find relief with pharma if he is on Verapamil at high doses. It carries risk too, but is the mainline treatment and offers the best relief to the most people taking pharma. 

I understand your dis-comfort with alternatives. Read up and ask any questions on the closed boards. We try to keep that in the members only section due to the bots running around the net. 

He needs to try an energy drink at the first sign -when his teeth first say 'HI!'. Slam it down fast and cold. The D3 Regimen should be started right away. It can take up to 2 weeks to help a lot, but it gets him moving in the right direction. Some people get relief in a week. All safe good for you stuff in there. :) O2 is the prime aborter and a huge help! Medical O2 is normally a lot more expensive than a welding set up. And he will need a script for it too. Welding he can do on his own. And I would add, give up to 25mg of Melatonin at night. Not sure how much he is taking now, but 6mg is usually not enough. 

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5 hours ago, spikeinthehead said:

He is going to try to get a script for oxygen , hoping a general doctor may prescribe .  

This is very unlikely.  Most general-practice docs don't prescribe oxygen, for unjustifiable reasons that we don't have to go into here.  Maybe he'll get lucky.  Ask the doctor to look up CH abortive treatments in whatever app s/he uses -- oxygen is listed #1. As spiny said, medical O2 without insurance is very expensive, and some medical oxygen suppliers won't give it to you without insurance, even with a prescription.  I know it's hard to appreciate how critical O2 is to his wellbeing and state of mind, but it can't be overstated.  Many, many people with CH describe it without much exaggeration as a lifesaver.  A welding O2-based system can be set up for under $200.  I won't push on this any more, but needed to say this.

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1 hour ago, CHfather said:

.....  I know it's hard to appreciate how critical O2 is to his wellbeing and state of mind, but it can't be overstated.  Many, many people with CH describe it without much exaggeration as a lifesaver......

....personally, I'd crawl thru hell in a gasoline suit to get O2...saved my sanity, perhaps my life...and got me as close to a "regular" life as a clusterhead can get.....NOTHING to lose but pain.............

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9 minutes ago, Into Light said:

regarding oxygen, i'm near @spikeinthehead. i self pay apria. it's not expensive.

Thanks for this info, ITL!!   Can you get spike' moving fast on this?  Could he see your doc who wrote you the O2 prescription?  As you know, every day without O2 is a day of needless suffering.

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25 minutes ago, CHfather said:

Thanks for this info, ITL!!   Can you get spike' moving fast on this?  Could he see your doc who wrote you the O2 prescription?  As you know, every day without O2 is a day of needless suffering.

my neuro is at sloan-kettering memorial cancer center. luckily for me he has followed my lead, as i have learned here what i need to communicate to him. i stick there because i am covered by the WTC Health Fund, so pay nothing to go there.  which is good, but lymphomas are not.

i believe there is a cb approved neuro in venice, which is very close to us. i have sent my very dear friend the exact wording for the script. 

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On 11/2/2019 at 11:28 AM, spikeinthehead said:

Hello and thank you for the “ greetings”. Actually this is a note from his fiancé Karen .   I am terribly worried about him and of course feel so helpless. I’ve been reading this website for the past few weeks for any information to help him.
Briefly - he is 51 and started these in 2017 thinking mabe he had a bad sinus infection - went to dr. Who prescribed antibiotics which of course did not help.  These came on during the night - every night ( almost ) for close to 6 weeks or more.  Finally given sumatriptan and topiramate which really did not do too much except make him feel “ out of it “ .   Butalbital actually seemed to help more than anything , if taken at onset.

Did not have any headaches in 2018 now they have come back - approx. 5 weeks ago and with a vengeance.  Every day/ night - he gets the sensation in his teeth and right away it hits - too often it goes into a full blown attack , where pain is so intense he can not sit still or bear to be touched and he literally can not stand it ( I know you all are well aware of how he feels )  These last a few hours - we’ve tried everything. Butabital, tension  headache aspirin- espresso  ( just started which perhaps helps a bit) - Valium when he’s so agitated and can’t sleep after al the pain ( this usually can help him sleep some )——- trying the different vitamins  and melatonin ( think this may help a small bit )  - this is all left sided with the droopy eye , congestion, shadows ....Please excuse this long drawn out post —- I am so worried and anxious — he is extremely depressed at this point - he never knows when they will come and therefore is afraid to go to work in case one hits , no way he can drive with it.  We don’t know what to do —— I am writing because he feels hopeless and really won’t look at this site and I am looking anywhere for help and sick with worry ————- thank you for “ listening” 

Karen 

 

 

 

 

karen, 

i'll be back wednesday. oral sumatriptan is worthless. takes an hour to kick in. the sbucu injectors are the best emergency relief. if there hasn't been an abort via o2 which is the best. after he gets the o2 script i already sent a link to the correct o2 mask for us. get two. he will, hopefully sooner than later, have Mtank(s) at home and he can do what many of us do and keep an Etank on the car.

5-hour energy drinks are reputed to work much better than espresso.

hang in there. this is an amazing support group. one of a kind. with cluster knowledge in aggregate that far surpasses the information that almost any other doctor or neurologist has.

into light

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On 11/2/2019 at 2:50 PM, CHfather said:

Karen, he needs to get oxygen.  Without insurance, that probably means welding oxygen.  (He could get a prescription for medical O2 if he sees a doctor and then try to pay for it out of pocket.)  Here's info about the welding route: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/     O2 is really the highest priority, and he/you should move heaven and earth to make it happen.  A welding-based system can be created in a matter of a few days.

If espresso helps, an energy shot such as 5-Hour Energy will be even better.  Much more caffeine in it, and some other ingredients that are believed to also help.

The D3 regimen won't solve his problem right now, but he should start it right now.  The whole thing.

If the sumatriptan was in pill form, then no, it's not gonna help.  Injectable sumatriptan, or the triptan nasal spray will usually stop attacks.

He should consider ordering some rivea corymbose seeds for busting. Legal to buy and possess. This file includes basic information about busting (the reason this site exists) and a whole bunch of other non-busting stuff.  Throwing things at it like he's doing now is not a sound approach -- particularly considering the things that are being thrown.  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

Bless you for being there!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  I am a supporter myself, so I have this advice -- Don't let him talk you out of doing whatever you are willing to do to change this situation.  Sometimes people with CH won't accept help in the way they should.  Lots of understandable reasons why that sometimes happens, not really worth discussing here.  You have to persist.  I'm not talking about during an attack -- you have to listen to what he wants then, agonizing though it is.  But in terms of getting what he needs, whether that's O2 or vitamins or even seeds, you don't need to have permission.  In my opinion.

information: tranceplants.net will not ship to florida.

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fwiw...if you can get e and/or m-60 tanks (or something like them) the whole world opens up...I worked/travelled for over 30 yrs with CH cuz I had to...tank in the car, tank in the office, tanks at home and a couple of clustermasks from ch.com. once my employer and colleagues understood what they were for it was accepted that Jon would disappear for a while occasionally....no big deal.  sorry for any presumptions...and all situations are different...but taking the mystery out of my condition and needs relieved THEIR anxiety....and made my career possible...

... D3 or busting may make this all moot....

 

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