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Tips for CH Sufferers (Read 37489 times)
ndhillst
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Re: Tips for CH Sufferers
Reply #100 - Feb 24th, 2013 at 10:23pm
 
Brew wrote on 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.

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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


I started this (except for the calcium) at the same time I started taking Verapamil along with my Depakote and my CH have been gone for 3 weeks.  I really wish I knew which it was that actually resolved my 4 month stay in CH Hell, but sadly I'm not willing to risk stopping either. 

I will say this, though.  Almost every year since I've moved to Arizona (17 years now) I get horrible allergies from late Jan to early March.  This year - no allergy symptoms.  So I'm going to keep on with this plan regardless of CH symptoms for general health if nothing else!
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shooky
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Re: Tips for CH Sufferers
Reply #101 - Mar 1st, 2013 at 3:41pm
 
Verapamil usually takes 2-3 weeks to take effect, so it seems the D3 is working for you.
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ndhillst
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Re: Tips for CH Sufferers
Reply #102 - Mar 2nd, 2013 at 12:00am
 
Thanks, Shooky.  Talking to my Neurologist the plan is to taper off the Depakote and Verapamil in about 4 months, but I'll stay on the immune system regime.  We'll see what happens long term.
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Jim Tew
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Re: Tips for CH Sufferers
Reply #103 - Jul 10th, 2013 at 8:24pm
 
OK!  four years CH free, four years no cigs (Chantix) and now the shadows are back!  Tips:

Oxygen, Oxygen and Oxygen.  I've has episodic CH since the early 1980's.  Had eye doctors tell me it was optical and my current dentist tell me it was dental and a Neurologist who actually knows what CH is prescribe prednisone taper(I declined) and intranasal lidocaine---which hurts almost as much as the CH...but not quite.

Caffeine seems to help.  Vigorous exercise seems to help.  I've done a ton of midnight planting and digging during an attack.  And walked a million miles cursing.

BUT hyperventilation level Oxygen ALWAYS aborts for me.  If it doesn't work for you---keep trying and pay attention to what Batch has to say.  Wrong flow rate, wrong mask...my former vet tech's father suffered for TWO years thanks to IDIOTS giving him the wrong mask and regulator. DO NOT LET THIS HAPPEN!   If you get the O2 script---great!!! Then spend less than $60 for a mask setup and regulator and take responsibility for your own heath.

Perhaps, an antihistamine might be in order if there is a chance it is tied to seasonal allergies.

Perhaps a decongestant might be helpful.

Alternating warm and cold compresses over the trigeminal nerve local when all else fails or isn't available.

There are several herbal/supplement regimens that have promise---try them.  Just started D3 myself.

If Oxygen isn't working try again.  Do not be a victim!

If you smoke---quit.  Try Chantix unless you are suicidal. If you have bad dreams, under Chantix they will be 3D vivid and terrifying. If your dreams involve Umma Thurman in a "non-threatening" pose...you will love Chantix.  Do six months not three.

The people on this forum know more than "most" if not all doctors.

DO NOT go to the emergency room.  They will screw you up completely.

DO NOT TAKE traditional prescription pain killers (opiats, Oxy, Etc.).  They will make it worse.

DO NOT let some quack cut into you.  NEVER a good idea.

TAKE CHARGE!  Order you own regulator---25 lpm is mandatory minimum.  You can  find them on amazon.  Rather than WAIT for a prescription, BUY your O2 at a welding supply company, Tractor Supply, Northern Tool, Harbor Freight, etc.  You "lease" the tank and then pay a nominal fee to swap it out as needed.  BUY the BIGGEST tank you can physically manage (at least a 3)---and then a smaller  backup  (a 2) which you can take in the car with you. NEVER RUN OUT OF O2!

Keep some Taurine inclusive energy drinks around for emergencies. Cheesy

DO NOT TELL the folks at the welding supply store WHY you want O2!!!!  Tell them you breed exotic Koi and need O2 to help them "get in the mood".
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Quit smoking June 1, 2009
Vitamin D, 25-Hydroxy 34.7 ng/mL 07/17/2013
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twotonejes
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Re: Tips for CH Sufferers
Reply #104 - Jul 11th, 2013 at 2:04pm
 
For me, the sound of ice cubes is like nails on a chalkboard. I go to bed with a frozen solid bottle of water wrapped in a tea towel. When I wake up in the night, it's already there waiting. I've found that I can apply pressure and cold at the same time, and it is useable through the morning. The only thing that seems to work for dulling the pain is Goody's headache powders. They don't do much, but it's something until I get to the neuro (yay, tomorrow!!), all the things I've tried with my regular doc haven't panned out. Crossing fingers that the new one is familiar with CH.
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yas
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Re: Tips for CH Sufferers
Reply #105 - Jul 27th, 2013 at 10:21am
 
hey guys i joined this like last week and i been doing alot of research and i just started using fish oils i reallllly recommend u guys try this i havent been to a neuroligist yet i was put on verapimil 2 years ago and this last month or 2 they been coming heavier than ever and thats when i took matter in my own hand and started searching i take a fish oil pearl capsule 1400 n its realllly beeen workin great for a week so far i just hope it keeeps up please try it and feel free to hit me up and telll me any other tips that work or ask me for tips my email is yas44izzy@gmail.com my face book name is yasser ismail gaber add me n ask ne thing i know how bad this beat is and i would love to share whats been helping me cuz no one should have to go thru this
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maz
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Re: Tips for CH Sufferers
Reply #106 - Aug 15th, 2013 at 5:37pm
 
Hi Chrislehr
There is no cure, but there is plenty you can do to control the pain.I have just started the D3 regime, and it seems to be working so far. I have never been offered oxygen so can't comment, but it seems to work well for every one else. Up till now though, I have found sumatriptan (imitrex) injections are my magic bullet and the only thing that works. Total relief in 5 - 7 minutes. Forget pain killers - my neurologist told me that even morphine won't work on CH.
Read every single post on this site, and you'll find lots of suggestions, but the D3 and oxygen are favourites.
Don't be sorry for coming here. That's what we are here for and we all suffer the same as you so we understand.
maz
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kimheerahk
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Re: Tips for CH Sufferers
Reply #107 - Sep 8th, 2013 at 5:43am
 
Cluster headaches are the worst. And my heart goes out to all those who have to deal with them. For me I've found that acupuncture using a finger pricker has worked well for me. I poke my thumb a little above my nail and then apply pressure till blood comes out and do this to both of my thumbs and big toes. Usually the blood is alot darker when I have a Cluster Headache, almost black. Im not sure what the reason for this is. My Cluster Headaches go away in a few minutes. This method is also popular in korea for headaches and stomach aches caused by indigestion. Hopefully this might help out. For those scared of needles dont worry with a finger pricker you can barely even feel the needle.
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sj
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Re: Tips for CH Sufferers
Reply #108 - Oct 13th, 2013 at 1:43pm
 
30 yr cluster patient//new to website///new cluster just starting...has anyone used botox///i have found that imitrex injections(not pills) kills individual clusters/ oxygen if caught early can kill individual ones//decatron injection has sometimes helped reduce or one time killed cluster cycle/////have also taken decatron pills (be careful has potent side effects)//during cluster have found if you hold your breath it reduces the pain briefly
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Hoppy
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Re: Tips for CH Sufferers
Reply #109 - Oct 13th, 2013 at 7:48pm
 
Hi All,
I found relief with Imigran 50mg tabs washed down with a
really strong cup of coffee at the first sign of an attack, and
ice applied to the back of my neck. This would abort the
Smiley within 20 minute's.

Hoppy.
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Cracked Egg
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Re: Tips for CH Sufferers
Reply #110 - Jan 30th, 2015 at 9:05am
 
Hello, i'm new, i've had 'migraines' since i was 7, now 47 and i've been told i have cluster headaches. Having been given Migraleve all my life and finding them pointless i've found my best route for relief when i wake at night is to take a simple Anadin Extra and sit in the bath with the shower on the back of my neck and head. It's difficult to start as you are restless but soon calms the restlessness and the extreme pain is easier to cope with. After half to an hour i'm able to get sleep. It works for me, hopefully it can help someone else. As mine is a new diagnosis i'm yet to try any proper remedies but this has helped me cope for years
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Potter
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Re: Tips for CH Sufferers
Reply #111 - Jan 30th, 2015 at 11:12am
 
Cracked Egg wrote on Jan 30th, 2015 at 9:05am:
Hello, i'm new, i've had 'migraines' since i was 7, now 47 and i've been told i have cluster headaches. Having been given Migraleve all my life and finding them pointless i've found my best route for relief when i wake at night is to take a simple Anadin Extra and sit in the bath with the shower on the back of my neck and head. It's difficult to start as you are restless but soon calms the restlessness and the extreme pain is easier to cope with. After half to an hour i'm able to get sleep. It works for me, hopefully it can help someone else. As mine is a new diagnosis i'm yet to try any proper remedies but this has helped me cope for years


   Take an aspirin and a shower. Not really much good but hang around and study.

                     Potter
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NoMoreHeadaches
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Re: Tips for CH Sufferers
Reply #112 - May 5th, 2015 at 5:13pm
 
Hi,
I have had Hortons for 2 years now and just about 6 weeks ago I got a tip about this mouth spray from a guy that have been cured from his Hortons in like 1 month time and he is still pain free after 7 months. The spray is is increasing the oxygen  on a cellular level and keeps the body hydrated. I have now been pain free for about 1 week and I am just so happy I just had to share it with you.
All the best
NoMoreHeadaches
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Hoppy
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Re: Tips for CH Sufferers
Reply #113 - May 5th, 2015 at 6:06pm
 
You forgot to mention the brand name of the spray.

Hoppy.
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shooky
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Re: Tips for CH Sufferers
Reply #114 - May 8th, 2015 at 8:38pm
 
Maybe he's talking about a topical steroid like Fluticasone. I found that it does help, especially when used as support to more potent prophylactics.
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BULGARIA
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Re: Tips for CH Sufferers
Reply #115 - May 22nd, 2016 at 2:59pm
 
Take 6 500mg Chlorella pills everyday and drink at least 2 litres of water per day.
Posted a new thread today about my experience.
Good luck.
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Theoretical Guy
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Re: Tips for CH Sufferers
Reply #116 - Jun 9th, 2016 at 3:39pm
 
Hi for everyone,

The past 10 years, every year 2 times, a month or more i was suffering from self-diagnosed CH.
Every year i come back to this forum, and website to do the study, and see the news, but mainly found treatment only for simptoms.
Doing observation on myself, and continous reading from other sufferers, i will describe my theory, and treatment, which is working, and i hope to help others.
I think the main cause is depression. It's hard to recognise on ourselfs, but from my observation, regarding the last episodes, i am sure.
For example, if you catch a cold, after recovery it's usual to feel 'blu', for me after almost for every flu, CH is coming out. First i was relating with the state of the immune system, like many people do, and treats with D3, it'ok, but not in every case is treatment for the cause.
Another example is summer-winter change, or vice-versa, can cause depression like symptoms, and in a few days CH.
So if we search for DIY treatment for depression, and we fight against this, i think we found the cause of the weakened immune system, and so on.
My working treatment looks like this:
1. Cold shower in the morning, as cold as possible 10 celsius, 20 or more seconds
2. B6 vitamine or B complex
3. 1 teaspoon proteine powder after breakfast with coffe.
4. Relax - and give yourself time to recover.

It's normal to find yourself the right way out from this state.

I think, the human body it's fully automatized "machine", so if we want, we can fix the system.

Cheers.
Ps. For me the symptomatic treatment was not so efficient, i used oxygen, imitrex, energy drinks, water, but  i feelt like it was just a delay for the next episode.
If you want i can make a whole document with my study, including bibliography and links.
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Theoretical Guy
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Re: Tips for CH Sufferers
Reply #117 - Jun 10th, 2016 at 1:29pm
 
Ps. For the immune system recovery i used Royal Jelly, every day, first thing in the morning, 20 minutes before breakfast.
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Jibran
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Re: Tips for CH Sufferers
Reply #118 - Jul 15th, 2016 at 8:44am
 
If anyone in Canada is looking for O2, please go to medigas.com (just ensure you get a doctor to prescribe you High Flow oxygen) so you can get 15l/min...please do yourself a favour and start using O2 as an abortive (its God sent) with 0 side effects....other tips and tricks below:

ICE pack on the neck/temple/forearms and feet provides relief

hot and cold shower variation provides relief

go on Batch's vit d3 regiment NOW!!

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Re: Tips for CH Sufferers
Reply #119 - Dec 13th, 2016 at 12:08am
 
Thank you so much for those tips
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Re: Tips for CH Sufferers
Reply #120 - Dec 28th, 2016 at 4:01pm
 
I've had CH episodes for about 20 years. The pain would kick in around 11.45 am and last for precisely 2 hours. My neurologist prescribed sumatriptan tablets and suggested I take one 30-45 minutes before the pain was due to arrive. It was effective in reducing pain but I still felt a 'heaviness' and inability to concentrate or socialise.

I went to a chiropractor who adjusted some bones in my skull, accessed via my mouth, which wasn't pleasant. Since that intervention I have been free of chronic pain but have experienced shadows around spring and autumn, the usual times of vulnerability. The trigger seems to be excessive workload overlaid with a few glasses of red wine.

I'm fascinated by Batch's work on D3 and anti-inflammatories – I suspect that histamine is a significant factor. I've ordered my supplements and will be taking them and am looking forward to monitoring the effects.
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Hendrik
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Re: Tips for CH Sufferers
Reply #121 - May 13th, 2017 at 7:36am
 
I didn't introduce myself yet. I'm a Dutchmen living in France, 48 years young. Since 2000 (30 years old) i've had many periods with attacks, almost every day, lasting about 6 weeks.
When i came to France i didn't havy any assurance medical (vivre l'europe) and i was forced to pass a period without any medication. In that time i learned how to have a litle less pain and surviving an attack. I put my hand before my mouth and put pressure with my breath (a bit like you shit) and i let a bit of air escape between my hand and my mouth. That way, i've got a bit pression in my head and that makes the bloodvessels that touch the nerve that causes the pain a bit smaller and the pain is realy less. But sometimes i have to do it for an hour and afterwards i have a bit of pain because of that. But all pain is better then the pain of an attack. I don't know if it works for you, but i hope so. Also, is start doing this direct when i feel an attack is comming. You know the signals your dents are giving you.

I hope someone takes advantage of my methode.

Greetings,

Hendrik.
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Re: Tips for CH Sufferers
Reply #122 - May 12th, 2018 at 11:53pm
 
I hope this info helps others.  I've been two months free of clusters headaches (which, yes, were horrible)  the two things that changed in my life were 1.  I was able to come off my meds - hydrochlorothiazide and 2. I had gone to physical therapy for a still neck.  I do think the PT has been what has helped the most.  One of the exercises was when I lay down I bring my chin to my chest and hold it there for the count of 10..  I began doing this in the morning  5 times in a row.  If I felt a headache begin to come on, say while on the train or at my desk I'd bring my chin to my chest and it would go away.  This stretches the muscles in the front of the neck under the chin as well as the back of the neck.  Ad I strengthened these muscles they had me add the lifting of my head when I did the exercises lying down. So again, lying down, chin to chest then lift the head off the bed  hold for up to 29 seconds.  You can build up to the 29.   I hope this helps folks.  I've had headaches since the 1980's and now I can go a day without or just having a mild one, which is 10times better then the clusters!!!!  May you all find relief!
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