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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> What I have found
        
(Message started by: Gadget_Ollie on Jan 20^th, 2007, 1:08pm)

Title: What I have found
Post by Gadget_Ollie on Jan 20^th, 2007, 1:08pm

Hello, this is my first post. Actually, I've visited this site on many occasions, but I signed up yesterday to share my findings in hope that maybe someone else can benefit from it.

A little background info first. I'm a chronic CH sufferer. This bout has been in progress for a little over 16 months now, with no relief in site. I've taken the full gambit of medications from Axert to Prednizone, to my present medication of 900 mg of Lithium per day. Nothing has brought any relief so far. I tried as many tips as I could find, I've tried changing my diet, and I've tried heat packs, cold packs etc., all to no avail.

My attacks are generally 3 times a day and they may vary in strength (my scale is 1 to 10 where 1 is an annoyance and 10 is wanting to slam my head in a door...although admittedly, I've had several 12's so I may need to adjust my scale). Often the headaches last from 1 hour to an hour and a half.

The holidays came around this year, and my wife bought the customary quart of eggnog (I love eggnog). The following week as she was grocery shopping, she stumbled across eggnog ice cream and bought some. Well, needless to say, eggnog ice cream was on my dinner desert list for the next 2 days. When we ran out, she replenished the supply the following week and of course, dessert was decided.

This went on for several weeks when it finally dawned on me...whenever I had ice cream for desert, I had no CH that night (at first I thought the Lithuim was finally starting to kick in after several months).

Time to start experimenting. Skip ice cream...CH that night. Eat ice cream...no CH.

Okay, is the ingredients in the ice cream, the sugar, the cold...?

I decided to skip the ice cream for several nights (adds too many calories anyway :( ). Now when the CH happens, I would get an ice cube and hold it against the roof of my mouth on the side the CH affects (my right side) until it melts. While it's in my mouth, there is no CH pain. When it's fully dissolved, it takes my #5 CH down to a #1. A second ice cube removes it completely. A painful CH that normally lasts for an hour or so is completely gone in 5 minutes.

This has worked for me successfully for the last 6 episodes. This is certainly not a scientific test nor is it a known preventative method. It's what I have found that so far is helping me. Will it help others...I hope so.

Title: Re: What I have found
Post by froggy on Jan 20^th, 2007, 1:17pm

Interesting. I've heard of not eating ice cream because the coldness might trigger the headache. My husband eats icecream, is Chronic and still gets headaches everyday.

Even though Ice on his head doesn't work, inside the mouth is worth a try. Thanks. (Glad it is working for you)

Title: Re: What I have found
Post by Gadget_Ollie on Jan 20^th, 2007, 1:36pm

I'm not sure why it helps...maybe it's the part of the nerve that's affected.

The ice cream is only what led me to try the cold on the roof of the mouth. Ice is obviously less expensive and calorie free :D

Good Luck!

Title: Re: What I have found
Post by georgej on Jan 20^th, 2007, 2:35pm

on 01/20/07 at 13:36:19, Gadget_Ollie wrote:

There are others here who've reported that ice against the roof of the mouth or popsicles, etc, has been helpful to a greater or lesser extent.

Some time ago, in a thread about the ganglion lumps that some of us get during a CH attack (most often on the back of the neck, but occasionally on the roof of the mouth) there was some discussion that ice applied to the affected area could provide at least some partial relief during an acute attack. Sounds as if this might be the same thing.

Best wishes,

George

Title: Re: What I have found
Post by Bob_Johnson on Jan 20^th, 2007, 3:02pm

While his was posted some months ago there is too little feedback to have any sense of wether folks here have tried/had any success with this med.
---------

J Headache Pain. 2005 Oct;6(5):417-9. Epub 2005 Aug 1.

Warfarin as a therapeutic option in the control of chronic cluster headache: a report of three cases.

Kowacs PA, Piovesan EJ, de Campos RW, Lange MC, Zetola VF, Werneck LC.

Headache Section, Neurology Division, Internal Medicine Department, Hospital de Clinicas, Universidade Federal do Parana, Rua General Carneiro 181/1236, 80060-900 Curitiba, Brazil. cefaleia@hc.ufpr.br

Chronic cluster headache remains refractory to medical therapy in at least 30% of those who suffer from this condition. The lack of alternative medical therapies that are as effective as, or more effective than, lithium carbonate makes new therapies necessary for this highly disabling condition. Based on a previous report, we gave oral anticoagulants to three patients with chronic cluster headache. Two of them remained cluster headache-free while taking warfarin. In the third patient, the use of warfarin for three weeks initially increased the frequency and intensity of cluster headache attacks but subsequently induced a prolonged remission. In spite of the paucity of data available, oral anticoagulation appears to be a promising therapy for chronic cluster headache.

PMID: 16362716

Title: Re: What I have found
Post by froggy on Jan 20^th, 2007, 3:18pm

I think that I've read in the past that warfarin is connected with rat poison.

Title: Re: What I have found
Post by georgej on Jan 20^th, 2007, 8:55pm

on 01/20/07 at 15:18:10, froggy wrote:

I think that I've read in the past that warfarin is connected with rat poison.

It is. Kills rats by drastically reducing the blood's ability to clot--they bleed to death internally.

Used in carefully controlled and monitored doses as a prescription medication, it is a highly effective blood-thinning agent. My brother has been prescribed Cumadin (warfarin) to treat deep-vein thrombosis.

Best wishes,

George

Title: Re: What I have found
Post by chewy on Jan 20^th, 2007, 10:13pm

Good thread. Ice Cream.

::) ::) ::) ::) ::) ::) ::) ::) ::) ::) ::) ::) ::) ::)

Title: Re: What I have found
Post by froggy on Jan 20^th, 2007, 10:40pm

Yes, my father-in-law was prescribed it as well. He then developed a tumor then died of cancer - go figure.

I think that warfarin is kind of a swear word in my family now.

I'm with ya, small controlled doses.

Take care and thanks for the info.

Title: Re: What I have found
Post by floridian on Jan 21^st, 2007, 12:32am

Another way to get vasoconstricting cool water close to the spot is a neti pot or nasal irrigation device. Don't use ice water - way too cold. Usually, I rinse my sinuses with body temperature water. Once I used room temperature water, which seemed very cold - could feel the blood vessels tighten up suddenly.

http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Neti%20Pot

Probably only has a chance if done immediately upon onset - I can't imagine using my neti with anything above a 6 or 7.

Title: Re: What I have found
Post by Barry_T_Coles on Jan 21^st, 2007, 9:57pm

on 01/20/07 at 14:35:18, georgej wrote:

Some time ago, in a thread about the ganglion lumps that some of us get during a CH attack (most often on the back of the neck, but occasionally on the roof of the mouth) there was some discussion that ice applied to the affected area could provide at least some partial relief during an acute attack. Sounds as if this might be the same thing.

Best wishes,

George

I use a cold pack on the ganglion area & it works very well, I also have exploding head syndrome & have found that sleeping with the cold pack that I get very few EH hits & a better nights sleep.
The one's I have look similar to this.
http://www.badbacks.com.au/images/products/BodAssistGelLarge_360.jpg
Cheers
Barry

Title: Re: What I have found
Post by starlight on Jan 25^th, 2007, 2:52pm

I have used ice cubes in my mouth during severe hits. It is HELPFUL, but does not get rid of the headache for me.
Eating icecream when NOT getting a hit and finding you do not end up getting a headache I do not think is a result of the cold. Is it a result of the calcium?
I find magnesium is helpful and take it even out of cycle. I think that you are supposed to take that with calcium. Maybe you are calcium deficient. Just a thought.

Title: Re: What I have found
Post by sandie99 on Jan 26^th, 2007, 5:49am

I'm glad that you've found what helps you. :)

Ice cream did abort one of my hits once. But just once. Cold things in general help me out with ch.

PF days to all,
Sanna