Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Pages: 1 2 3 4 5 
Send Topic Print
Tips for CH Sufferers (Read 37490 times)
Potter
CH.com Alumnus
***
Offline


Team MOOSE DROOL Stinky
Stuff on a Hook Prostaff


Posts: 3600
Blgs.Mt.
Gender: male
Re: Tips for CH Sufferers
Reply #75 - Nov 7th, 2011 at 8:27am
 
Education is the key Kojak.  You say you eat pain meds like candy and that is counter productive.  How were you administered Oxygen and at what flow rate?

            Potter
Back to top
  
 
IP Logged
 
LasVegas
CH.com Sponsor
***
Offline


Episodic CH since 11 yrs
old, now 50.


Posts: 2020
north of the 60th parallel
Gender: male
Re: Tips for CH Sufferers
Reply #76 - Nov 7th, 2011 at 10:40pm
 
Kojak wrote on Nov 6th, 2011 at 6:54pm:
Cluster Headaches is not all about education Potter. Everyone has his own way of coping. Been a sufferer long enough to try everything, and this is what worked out for me so far. Just sharing my experience for people who might find it useful, at least until Bob Wold makes it for all of us.



Kojak,

That's wonderful you've found something that works for you, hope it continues to be of benefit aborting your attacks by the DRAGON.

However, treatment of CH's truly IS all about education. Afterall, why do you visit this website? Education!

On a note of education....pain meds are COUNTER-PRODUCTIVE for effective CH treatment!

Wishing you PFDAN!
Back to top
« Last Edit: Nov 7th, 2011 at 10:41pm by LasVegas »  

Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019
 
IP Logged
 
Kojak
CH.com Newbie
*
Offline


I love YaBB 1G - SP1!


Posts: 3
UAE
Gender: male
Re: Tips for CH Sufferers
Reply #77 - Nov 18th, 2011 at 10:41pm
 
Thanks for the replies, it's just that this new cycle is a bit too tough, I'm a bit jumpy (Attacks mainly at night and hourly, never had that before in my life). Oxygen at 15 lpm sometimes does the job but is not reliable that's why I changed to other methods, and I'm not going for any injections or any of that sort of medication cause I've had enough of it. (And headbanging is not always an option nightime) So quick question:

Has any of you tried RUNNING to prevent or abort a cluster!! My new trial and here are my results:

Documented for the past 5 days, every time I feel the hit coming or wake up at the peak of one, I jumped on my treadmill, put speed on 5.5 or 6.5 km/hr, breath systematically, and the beast is down in less than 10 min!!!
100 % success. 15 out of 15 hits and counting. It's almost 8 am here, and just broke one down and thought I'd share.

I really would appreciate your comments on that.

Cheers
Back to top
  
 
IP Logged
 
LasVegas
CH.com Sponsor
***
Offline


Episodic CH since 11 yrs
old, now 50.


Posts: 2020
north of the 60th parallel
Gender: male
Re: Tips for CH Sufferers
Reply #78 - Nov 18th, 2011 at 10:45pm
 
Getting rid of the co2 buildup by increased o2 is no doubt the best and most natural way to abort an attack.

o2 therapy hyperventilating with a NRB mask at flow rates of 25--40 lpm would abort faster than your running, but whatever works for you, fantastic you found something Wink
Back to top
  

Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019
 
IP Logged
 
Dragon
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 2
Re: Tips for CH Sufferers
Reply #79 - Nov 23rd, 2011 at 4:02pm
 
Hi to everyone,
This is my first post since joining the site after my last attack but thankfully ive now had about 2 weeks of PFDAN after suffering for nearly a year and finally being diagnosed about 3 months ago. My attacks would vary from 2-6 hours long and would generally be a few times a week.
I was put onto several different meds to help but found O2 to be the fastest acting remedy. This was mainly due to frequent a+e visits.
Since then i have been prescribed O2 for the home and have been on Pizotifen for about a month.

I feel the Pizotifen has been the most helpful preventative for me once i had been on it for about 3 weeks and hope this is helpful for anyone else.

Despite not having an attack since joining the site I found this site very helpful for education.
Back to top
  
 
IP Logged
 
Guiseppi
CH.com Moderator
CH.com Alumnus
*****
Offline


San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male
Re: Tips for CH Sufferers
Reply #80 - Nov 27th, 2011 at 6:29pm
 
Welcome to the board Dragon, glad you found us. Do keep reading like crazy. The more back up and secondary plans you have for treating the beast, the better. his nature is to morph, what works this cycle may not work next time.

Joe
Back to top
  

"Somebody had to say it" is usually a piss poor excuse to be mean.
 
IP Logged
 
Dragon
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 2
Re: Tips for CH Sufferers
Reply #81 - Nov 28th, 2011 at 7:14pm
 
Thanks for the welcome Joe.

As for back up plans i try my best.
i am on the Pizotifen as a preventative treatment, i follow the water water water theory at the same time and i have the O2 cannisters as a final resort.

Ive still been having PFDAN so im sticking with what works for now and am so thankful for the site for support as well as the support of my Dr (who actually understands Cluster headaches) I try not to think about the morphing ability of the beast although i know this is a possibility. Taking each day as it comes and having a positive attitude to the meds.

I guess quitting smoking has helped too. The more O2 in my system the better i am so inhaling toxins is counterproductive. I was a long time cannabis smoker and have found it rediculously easy to quit by simply not buying any. Cigarettes are the next to go but that is harder to kick.

Heres hoping for PFDAN to all.
Back to top
  
 
IP Logged
 
Elise
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 2
Re: Tips for CH Sufferers
Reply #82 - Jan 3rd, 2012 at 6:58pm
 
Mrs. Deej...I am new to this sight and I don't know where I should put this question but...it's a biggy...I'm directing it TOWARDS you...but I'm sure that there are a lot of other people with the same problem or some valuable advice!
I noticed in your profile picture that you have at least one child...I am a new mom and prior to getting married I always said that I'd "never have kids" because I couldn't fathom how I would ever cope with one of these monsters while catering to the needs of another... Well, I met a wonderful man with a young daughter and got married (she was old enough to semi-fend for herself...8) then I did what sometimes seems (when I'm caught up in one of my episodes) like a selfish thing...I had a baby...she's 10 months now and my question to you is...HOW DO YOU DO IT ALL!?!? I'm a SAHM but when these things strike, no laundry gets done, folded, dishes don't get done...basically, my house looks like its turned into an episode of hoarders gone horribly wrong...The depression is bad enough because my poor baby has to be condemned to her pack-n-play (baby jail) and I feel horrible because I know that sometimes it's scary for my step-daughter (now 10) to watch...then the house goes to pot and pancakes are on the menu every night for dinner (because it's all i can manage..)...I almost feel like....ok, not almost...I do feel like I am the worst thing that could happen to this family...my wonderful husband is increadibly supportive but I still feel like I'm holding him back...like he should go find someone better (i.e. anyone that doesn't experience these things would be an improvement...) anyways, I saw that you have a baby and so you must have some experience juggling the horror headaches and a family...I need help and/or "secrets" from you or anyone else that can help. Thank you so much in advance...I'm sorry that I'm sure I put this in the wrong section.
Elise
Back to top
  
 
IP Logged
 
Jim - PA
CH.com Newbie
*
Offline




Posts: 4
x0||USA||0|0|PA,Pennsylvania
Re: Tips for CH Sufferers
Reply #83 - Feb 21st, 2012 at 1:09am
 
Mrs Deej,
I have suffered from Cluster Headaches for the past 35 years.  About 3 -4 yrs ago I started taking 5000 IU's Vit D3 to boost my immune system in case I got the Swine Flu. I tested my blood levels of 25(OH)D to be safe. Blood level has hovered around 65 ng/dl since that time.   Unexpectedly, I noticed that my Cluster Headache episodes stopped altogether.  I am now about 3 years overdue for an episode compared with the previous 35 years when they have always arrived on approximate schedule.  I also happened to be taking some fish oil, krill, zinc, and Vit K2 and occasional magnesium, but I always took them before and still got clusters.  It was only when I added high dose of D3 that my Cluster episodes stopped.  I have recently read a couple of Headache journal articles that have said D3 is helping people with Clusters, migraines and Tension headaches. It has a role in function of the hypothalamus that is known to malfunction in cluster sufferers. Also, clusters occur more often in fall, winter and early spring when we get the least sunlight to make our own Vit D.  So, I think this is a must for all cluster headache sufferers to get D level checked and take it up to the 60 - 90 ng/ml level as recommended treatment for headaches as well as boosting immune system.  If a headache episode does strike, Oxygen is my first weapon.  Turn up flow rate so that you get 100% O2. Need to have mask with the bag that fills up.  You are breathing out of the bag.  The flow rate just keeps the bag filled.  Don't be afraid of it.  High dose (eg., 5 grams) Fish Oil also helps reduce inflammation and eases the severity.  I had some success with that before doing the Vit D.  And last I would say, don't ever give up. You just have to keep going until you get something that works for you.  It's out there.  You'll find it. Good Luck. All of you are always in my prayers. 

Jim
Back to top
  
 
IP Logged
 
Barry_T_Coles
CH.com Alumnus
***
Offline




Posts: 2073
Karratha|,West_Australia
Gender: male
Re: Tips for CH Sufferers
Reply #84 - Feb 21st, 2012 at 3:20am
 
Hi Jim - PA

Take a look at this thread.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

It reaffirms what you say about Vit D, lot of reading but well worth it.

Cheers
Barry
Back to top
  

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
Of all the things i've lost in life the thing i miss most is my mind.
WWW http://mushys.com/kiwi  
IP Logged
 
arelvee
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 5
Re: Tips for CH Sufferers
Reply #85 - Mar 5th, 2012 at 11:55am
 
HOMADE HOT/COLD PACKS

Hot/ cold packs that are flexible can be made by putting dry rice, beans or lentils into an old sock and tying it off. microwave for a few min for hot and it will stay hot for quite a while. It works for cold too but you have to let the the whole thing dry out completely after use before refreezing. So several cold sock are a must as drying can take several hrs.
Back to top
  
 
IP Logged
 
Jason C
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 3
Re: Tips for CH Sufferers
Reply #86 - May 19th, 2012 at 12:26am
 
That all sounds great to me especially the o2, but what help me ,or i think helps me is wrapping a belt around my head , somewhat tight,and a pressure point on the back and side of the neck.
Back to top
  
 
IP Logged
 
RM
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 5
Re: Tips for CH Sufferers
Reply #87 - Jun 5th, 2012 at 7:00pm
 
After my imitrex injection, I take a wet wash cloth, microwave it for15 sec and hold it to my neck(as hot as I can stand) on the side of the ch, I do this until the beast retreats. I don't find a cold compress helps me at all. I hope this advise helps some of my fellow ch SOLDIERS.  Smiley
Back to top
  
 
IP Logged
 
Dragonkicker007
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 1
Re: Tips for CH Sufferers
Reply #88 - Jun 7th, 2012 at 9:17am
 
I usually use 02, but if I am out of the house and cant get there I have found that slushies/ slurpees have helped, especially if you can get a brain freeze, once the brain freeze is gone so is the pain.
Back to top
  
 
IP Logged
 
Rfigs81
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 15
phoenix. az
Gender: male
Re: Tips for CH Sufferers
Reply #89 - Jul 1st, 2012 at 2:54am
 
I have been useing disolveable alavert and seems to combat the episode rather well, but am open to new ideas..
also running warm/hot water over the effected side of the head.
Back to top
« Last Edit: Jul 1st, 2012 at 2:55am by Rfigs81 »  
 
IP Logged
 
Enilder
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 1
Re: Tips for CH Sufferers
Reply #90 - Jul 12th, 2012 at 7:20am
 
Hello all from Australia,

New to the beast. Have been dealing with it for years but never understood it as cluster headaches and thought they were tensions headaches but they have recently upped the anty on me in both severity and frequency. So this site has been really helpful so thank you to the creator and everyone that has shared.

I have read through this whole thread and taken notes, an attack plan is born  Wink.

Anyway, I get some relief with heat packs/hot showers which has been mentioned. However, I recently stared seeing an acupuncturist to try and resolve these attacks and he recommended putting my feet in a bucket of warm water. This has worked very well a couple of times now completely stopping an episode. This will be specific to my particular case as I believe it has something to do with increasing circulation but there must be some of you out there that it will also work for. I have also found that rubbing Tiger Balm into the affected side of the head on the neck up to the bottom of the head (all over those tense pressure point areas) can take some of the hit out of an episode.

Thanks everyone for all your tips. I have a nice trail and error list to use now as well as a lot of good information to help understand and deal with this.

Wishing you all the best,
Enilder
Back to top
  
 
IP Logged
 
NaptownMVP
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 1
Re: Tips for CH Sufferers
Reply #91 - Aug 1st, 2012 at 1:03pm
 
Hi there.  Found this site after doing some googling on CH's. 

Thankfully I do not get clusters as frequently as some here do. Usually two or three over a week or two, then they will go away for quite awhile.

I usually get mine overnight.  I will wake up in a full-fledged attack. I haven't gotten too used to spotting the early signs yet, except for the single stuffy nostril.

Anyway, when I do wake up with a death-wish inducing headache, I used to down any medicine that claimed to be a pain reliever (obviously to no avail).  The only thing that works for me is a long, HOT shower (hot as I can stand it). 

I go into the bathroom, absolutely no light, and turn on the shower.  I focus the shower stream directly where it hurts. Too the point where I can actually feel each individual spray hitting my head.  Weird.  And I just stand there and try to breathe as slow and as deeply as I can.  Then after the pain starts to subside, I will sit down and just let the hot water wash over me, continuing to breathe slow and deep. 

After about 20-30 minutes in the shower, the pain has subsided enough (and I've relaxed enough) to go back to sleep, and the pain is usually gone by morning.

I know that a lot of you guys have frequent CHs, so if you're a chronic sufferer, it may not work as well for you, but if you are just an episodic sufferer, this may work for you.
Back to top
  
 
IP Logged
 
ch6.5
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 11
Re: Tips for CH Sufferers
Reply #92 - Sep 23rd, 2012 at 7:26am
 
agreed. 5 years of hot steam showers before diagnosis
Back to top
  
 
IP Logged
 
Renee E
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 5
Re: Tips for CH Sufferers
Reply #93 - Dec 17th, 2012 at 1:15am
 
Just wanted to say the red bull, coffee, ice, jumping jacks and tobasco has helped. I took tips from everyone and combined them. Lol. Tastes gross and my tongue is raw but the headaches haven't lasted longer than 20 minutes. None have been kip 10, I've been managing to stop them at about 7 or 8 using all the tricks together. I also just started on d-3, fish oil and magnesium yesterday. Tears only once this cycle so far. I'm hoping I can maintain at this level til the end. Might be wishful thinking but I'm an optimist. Will try to get oxygen ASAP. Thank you everyone for your advice and things that work for you. Too bad we all didn't know this stuff years ago. It would have saved a lot of headaches, lol.
Back to top
« Last Edit: Dec 17th, 2012 at 1:17am by Renee E »  
 
IP Logged
 
Mike NZ
CH.com Hall of Famer
*****
Offline


Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
Gender: male
Re: Tips for CH Sufferers
Reply #94 - Dec 17th, 2012 at 3:43am
 
Wonderful mental image of you doing jumping jacks, with an ice pack on the temple, Red Bull in one hand, coffee in the other and snorting tobasco up your nose.

Since it works for you, great!

The D3 routine and oxygen should make it even better, but you've something that works until then.
Back to top
  
 
IP Logged
 
Chrislehr
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 1
Re: Tips for CH Sufferers
Reply #95 - Jan 16th, 2013 at 9:25am
 
Hi, i'm really sorry i am posting here cos i cant read everything to find the answer, i havent slept properly since Sunday with these headaches my eye hurts so much and i need to do something. I live in Italy and went to hospital to get some relief but they were useless and i dont know what to do... last time it happened they kept me in for six days and then released me saying it was cluster headaches but there is no cure... i suffered for 21 days with multiple headaches per day. 4-5 every 4-6 hours lasting for about 45minutes. I take zomig 5mg tablets for migraines but they do nothing... i tried everything but i don't want to take too much... does anyone know if valium or something like bromezapam will help?? i have already taken too many pain killers (not od but i dont want to take more) please please there is no doctor over here who will help me and i need a home remedy or something... please please help i am due for another in about an hour and i cant even sleep... anyone??
Back to top
  
 
IP Logged
 
Brew
CH.com Sponsor
CH.com Alumnus
***
Offline




Posts: 14163
Re: Tips for CH Sufferers
Reply #96 - Jan 16th, 2013 at 10:04am
 
Chrislehr wrote on Jan 16th, 2013 at 9:25am:
Hi, i'm really sorry i am posting here cos i cant read everything to find the answer, i havent slept properly since Sunday with these headaches my eye hurts so much and i need to do something. I live in Italy and went to hospital to get some relief but they were useless and i dont know what to do... last time it happened they kept me in for six days and then released me saying it was cluster headaches but there is no cure... i suffered for 21 days with multiple headaches per day. 4-5 every 4-6 hours lasting for about 45minutes. I take zomig 5mg tablets for migraines but they do nothing... i tried everything but i don't want to take too much... does anyone know if valium or something like bromezapam will help?? i have already taken too many pain killers (not od but i dont want to take more) please please there is no doctor over here who will help me and i need a home remedy or something... please please help i am due for another in about an hour and i cant even sleep... anyone??

For aborting individual attacks, hyperventilate with oxygen at the first sign of attack.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

To prevent further attacks, get on this regimen as soon as possible. It may take awhile to kick in (some respond in days, others months):

1. Omega 3 Fish Oil - 2000 to 2400 mg/day (EPA 360mg/day, DHA 240 mg/day)

2. Vitamin D3 - 10,000 IU/day

3. Calcium - 500 mg/day (calcium citrate preferred)

4. Magnesium - 400 mg/day (magnesium citrate or magnesium gluconate)

5. Vitamin K - 120 mcg/day

6. Zinc - 10 mg/day
Back to top
  

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand
 
IP Logged
 
Mike NZ
CH.com Hall of Famer
*****
Offline


Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
Gender: male
Re: Tips for CH Sufferers
Reply #97 - Jan 16th, 2013 at 9:52pm
 
Something else which will help with a CH is to drink as quickly as possible an energy drink with taurine and caffeine, like Red Bull or Monster. It'll help cut the pain level and duration of the CH.
Back to top
  
 
IP Logged
 
neuropath
CH.com Veteran
***
Offline


Same Hit, Different Day


Posts: 217
Re: Tips for CH Sufferers
Reply #98 - Jan 18th, 2013 at 1:36pm
 
1) O2: 10 bags standing upright, 10 bags kneeling down, in both cases keeping the torso upright. Makes a big difference.

2) "Pulling" the neck muscle diagonally forward and down. This means, if your CH is on the right, you tilt your head forward and down slowly towards your heart, gradually increasing tension on the neck muscle more and more to as much as you can stand. On a handful of occasions this has killed an attack completely (rare), in most case it can buy you between 5-10 sec of pain free time. Over the course of a 30 min KIP 8 I am generally able to shave off a minute or two buy doing this repeatedly.

3) Staying cold. At the onset of an attack I try to reduce my body temp as quickly as possible and with all means available. Nothing to do with local application of ice pack though. I have been observed standing semi naked on the balcony in winter and within only a few mins the attack is done. Same vaso-constricting principle than O2.

4) PH-neutral diet during episodes/high cycles

5) Zomig tablets. Useless for timely abort but helpful for night attacks as short term prevent. One, when taken at  bed time, can get me 8-12 hours pain free sleep. In my experience should not take more than 1 every 24 hours if you want to maintain efficacy and avoid rebound. Not what it says on the box and check with Dr. but works well for me.

Back to top
  
 
IP Logged
 
djphrenzy
CH.com Junior
**
Offline


I Love CH.com!


Posts: 93
Re: Tips for CH Sufferers
Reply #99 - Jan 24th, 2013 at 11:04pm
 
Ok, I have a tip. This may sound a little silly or possibly crazy, but I really do this. This strategy has evolved over time.

My attacks are always over in 45 minutes or less. So if I'm going to have an attack, I started setting the timer on my microwave for 45 minutes. No matter what, I know that when that timer hits 0, it will be over.

When I did that though, I realized I'd look... 44:30... pace a bit... look again 44:22. OK, time is going too slowly.

So then, I decided I needed to do things to make the time go faster. I'd force myself to load clothes into the laundry. 40:15. I'd go struggle through brushing my teeth (this one is particularly challenging!). 37:47. Make the bed. 31:14. Take out the trash. 25:15. Etc.

It's become sort of a habit, and now I kind of see it as a challenge... my way to make the best of a bad situation and flip the bird at the beast. All my housework gets done during an attack... I'm going to be dancing around anyway, might as well be doing something productive. Tongue
Back to top
« Last Edit: Jan 24th, 2013 at 11:07pm by djphrenzy »  
 
IP Logged
 
Pages: 1 2 3 4 5 
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!