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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hi from Malaysia
        
(Message started by: Shanthini on Feb 10^th, 2007, 10:54pm)

Title: Hi from Malaysia
Post by Shanthini on Feb 10^th, 2007, 10:54pm

Hello there, there are tears running down my face as I read some of the postings. I have had this problem since 1991 and only had it diagnosed as cluster about a week ago. In the past have gone to all kinds of specialists and no one could pin point it to cluster headaches. I have been treated for Trigeminal nurealgia being the latest before cluster and have been so many medications in the past that I have lost track of them. When I first got it, I know what triggered it. It was when I was working as a production manager of a production house (shooting TV commercials) It was a highly stressful job and had terrible working hours. Was also drinking beer quite a bit to relax. The day I quit my job and went to Bali, was the end of these headaches. However the next year I got it again. Was quite surprised since the orignal cirumstances were not present, but didn't pay too much attention. It went away after about two months an has been recurring over the last 16 years at random. have gone for brain scans, ENT specilaists, etc etc.
About 2 months ago, I visited yet another ENT doc and he suggested Trigeminal Neuralgia. While researching about this I came across the term cluster headaches. When I read info about it it seemed to be closer to what I was experiencing rather than TN. However my doc said that although he considered it, he still felt that it was TN. Was taking Nurontin for it. Lat week went to see a nuerologist(cos my ENT doc has left the hospital and he recommended this new doc) and he said that he feels it is more likely to be cluster form the symptoms that I decribed to him. Now am on Verapamil 40 mg, 3 times a day. The pain still comes once in a while over the last week, but the doc says that it will take about 2 o 3 weeks before it takes effect.
It feels like such a relief to find this site and the reason for my tears is "tears of disbelief" that what I have is something that can be identified and that there is a support group.
If any of you have herbal remedys would be interested to hear form you, as I really don't like taking western medicine, but will do so if that is the only way out.
Thank you for reading my post and will sign in again tomorrow.
Regards
Shanthini

Title: Re: Hi from Malaysia
Post by Linda_Howell on Feb 10^th, 2007, 11:28pm

Hi and welcome.

I think we can all relate to the tears of gratitude and relief upon finding this site and I hope you will take the time to read as much as you can here.

While I understand your reluctance to use Western Medicine..herbal or homeopathic therapies will disappoint you I'm afraid. Cluster headaches are caused by a deformed Hypothalmus and as such don't respond to things like accupuncture, herbs or special diet.

Please read this link however, as this is usually our first line of defense. After that Dr.s try medications that do have side-effects and are expensive.

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

Now don't forget to read all the links to the left. You are not alone in this anymore. We're here to answer any questions you have and give you a shoulder to lean on here.

Linda

Title: Re: Hi from Malaysia
Post by Bob_Johnson on Feb 11^th, 2007, 10:19am

First, your Verapamil dose is much too low. Please see the links below for drug information.

Second, for cluster headache there is nothing in the herbal area which has proven to be helpful. I'd strongly encourage you to print out the Rozen article as the most current thinking about treatment options. The Robbins article is much longer but it's a good site to explore.

http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
=========================================================================
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: Hi from Malaysia
Post by BB on Feb 11^th, 2007, 5:24pm

Hello Shanthini,

Welcome to the family, sorry that you are here with us because of pain but we are glad we can offer you a family with real understanding.

There are heaps of very good information on the Board, just spend some time reading up on all of the threads. Brew some nice strong coffee and make yourself comfortable in the chair and read on.

Regarding medication to control CH, a few things are a must to try, as they work so well for many.

1- Oxygen : cheap and fairly safe, and can abort an attack in mins.
2- Triptans: such as Imitrex, Zomig, Maxalt etc, also can abort the whole thing in mins.
3- Prednisone taper: for bad or stubborn cycles, can take up to 75 mg per day, tapering off over 5 to 7 days to break the patterns.
4- Verapamil : doses may vary from 480 mg per day up to 1000 mg, needs to be monitored but can work very well in blocking most of the attacks.
5- For night attacks, try Melatonin from 3mg to 15 mg per night.
6- For day shadows and little ones, try Red Bull , oxygen, strong coffee etc.
7- During an attack, feel around the neck to see if you have a cluster lump, a hot tender swollen ganglion under the skin which is tender to touch, can be on back or side of neck, if you have one, apply ice there, it will help a lot with the pain. It may be inside your mouth, back of tongue on the roof of the mouth too, if its there sucking on ice helps.
8- Come here and share with us your life in cycle, whinge, moan, celebrate .... whatever, we will be happy to listen and give you any emotional/mental support that you may need.
9- If you like to try new things, look at Kudzu, Taurine, Shrooms etc also. But as Bob said, they may not be as effective as quickly as traditional medication, especially at the beginning when the hits are fast and furious.
10- Other goodies to be discovered at a later date

Take care and wishing you many PFDAN ahead.

Annette

Title: Re: Hi from Malaysia
Post by Ob1kanobee on Feb 11^th, 2007, 11:41pm

Kudzu Root, Melatonin, Oxygen with Clustermasx, Red Bull Energy Drink, Vigorous Exercise before you feel headache coming, Magnesium and Calcium supplements, drink plenty of water to stay hydrated (no alcohol when in Cycle), Bucket of ice water (cold, very cold) with a good size towel to wrap around your head for 1 to 2 minutes straight then do it again with new water (re wet towel).

All these things are natural ways to get rid of the headache. Once you start taking Western Medicine (at least the ones for Cluster headache), you cannot mix it with herbs like Kudzu.

Learn how to use this site. All the information is here.

Title: Re: Hi from Malaysia
Post by Shanthini on Feb 12^th, 2007, 7:28am

Thank you to all of you who wrote back to me. I have a very heavy schedule this week but will check out all the sites that have been recommended. Thank you all so much again.
Will write a bit more about myself(not just the illness ;)) soon.
Take care and good health to all.
Love
Shanthini :D