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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Tennessee Newbie
        
(Message started by: chris_a_tn on Mar 14^th, 2005, 9:27pm)

Title: Tennessee Newbie
Post by chris_a_tn on Mar 14^th, 2005, 9:27pm

Howdy from Kingsport, Tennessee. I was just diagnosed with cluster headaches a few days ago, and still trying to figure this stuff out. Knowing what I know now, I realize that I had at least one small bout with it several years ago, but until 10 days ago, haven't had a single headache since. I'm going on my 10th day straight now, with last night being the worst yet (5 total during the night with vomiting). I have an appointment with my doctor in the morning to map out a strategy, but I'm curious as to what everyone else uses in an attempt for relief when the headache starts. Right now the doc has me taking Frova twice a day and I have 10mg Loritabs to use when the pain hits, but that's obviously the slow route (if any relief at all). Any tips/tricks that I could try would greatly be appreciated (especially those that I get before I go to bed tonight).

Title: Re: Tennessee Newbie
Post by E-Double on Mar 14^th, 2005, 9:37pm

This is a great resource to know like the back of your hand

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

It will present the appropriate treatments that you should seek and your doctor should know!!!

Wishing you the best !!
Best,
Eric

Title: Re: Tennessee Newbie
Post by jokrs2 on Mar 14^th, 2005, 10:49pm

Hi chris! Welcome. Sorry, you had to find us though. Since you've been diagnosed with the demon may I suggest that you go to all the links on the left side of your screen and find out how to wage the best battle possible for yourself. Your input will also help others that are unfortunate and need to be here. Over the many years I have tried many things but for most of the 20 + years that I have been chronic I have not had too much success with anything as I have some additional injuries that add in additional pain. YUK! Something I do is to go out in my jacuzzi and lay flat on my back in the water with everything under the water except my nose. It may just be a distraction but it does seem to help with my attacks. I am now using just Kudzu for therapy dosing daily and have had 3 days out of the last 8 where I only had mild shadows. I stopped Imitrex 9 days ago and just use the Kudzu. Narcotics did absolutely nothing except create more problems and the withdrawal after 14 years was a hoot. (just finished a week without it, so I'm all clean now). I also see a massage therapist who is studying this site so that she can help, and she primarily works on my head and neck. Yesterday I had a k-10 and she was able to get my eye back open after an hour but she said one side of my head would not respond to the massage. I wish you luck! Be blessed, Joe form Washington State

Title: Re: Tennessee Newbie
Post by RichardN on Mar 15^th, 2005, 1:03am

Hi Chris and Welcome

Make sure you read and copy the link E-Double posted and take to your doc tomorrow. Also . . . . the "oxygen info" (left of your screen, one link above the yellow "OUCH website") and take that with you also. First, you need an abortive that works . . . . and 02 fits the bill for about 70% of us. . . . . I can kill the bastard within minutes if I catch him early-on. At night, if he wakes me with a KIP 3-5, it's takes longer (10-15 min), but I can stop him before it gets to the "dance" stage. I can deal if I don't have to dance.

I cannot take triptans because of high cholesterol and arterie blockage, so 02 is my only abortive. For many here, Imitrex injections are the way to go . . . . usually with CH, anything that comes in a pill form just doesn't work fast enough to avoid the intense pain we here are all familiar with . . . .from what I've read here, the injections work within 5-10 min. Many use the 02 as first line of defense and save the (high-dollar and frequently limited dose prescriptions) Imitrex for the attacks the 02 doesn't abort.

You and your doc will need to start investigating preventatives. For me, it's Verapamil (started low, had my first PF day at 240mg . . . . got to 360mg . . . now 120 mg maintenance dose) Many use much higher dose with combinations of lLithium or other meds.

Melatonin is an over-the-counter supplement which for many reduces frequency/intensity of night hits (comes in 3mg tablets . . . 6-9mg appears to be common . . . take before bedtime and be prepared for some grogginess.

Look at the info and survey on Kudzu on the "Medications, Treatments,Therapies" board . . . . appears to be very promising. Also, over-the-counter available supplement.

Identify your triggers if possible. Alchohol was major one for me (quit 2/02 . . . after finding this site)

Try water/water/water (see "water x 3" link on left of screen)

Hot or cold work for you? For me, it's heat . . . I'd wake, hurting and never knowing "how bad is this one going to be?", go start a pot of coffee, then start running a (very) hot bath, then heat a couple of water bottles in the micro-wave (now use rice in cotton socks, knotted in the end . . . .stays hot for quite a while and molds to your face/neck much better than the bottles) . . . then pace, bounce up and down on toes , ,sometimes while leaning on wall and lightly rapping the other side of my head on the wall til bath ready . . .. total submersion while rubbing my neck muscles in a downward motion. That was before 02 . . . . but you don't have any right now.

If your thing is cold, frozen peas, cranberries or other moldables found in the freezer, cold shower, face in front of the air conditioner, take a stroll in the night air.

You will need a script for the 02 and proper mask/regulator. Likely,your med supplier will have to order a 15 lpm regulator and possibly even the non-rebreather mask (the one with the bag) The suppliers usually keep the 8 lpm regulators in stock and, unless they already have clusterheads among their clients, may look at you strange when you tell them how you intend to use it . . . . they have to be educated also.

Read, read, read. Ask any questions you may have. There's almost always someone here, someone else up and battling our beast. This is a big family offering info/caring/sharing and giggles from people who truly understand your pain.

"Nothing works for everyone, but something works for everyone" . . . here you will find the "something" that works for you.

Be Safe, PFDANs

Richard

Title: Re: Tennessee Newbie
Post by chris_a_tn on Mar 15^th, 2005, 8:35am

Thanks everyone. I had two headaches last night (down from 5 the night before), and the first one seemed to go away rather fast because I sucked on a lot of ice (read that somewhere). The ice didn't seem to deter the second one hardly at all, so I am guessing that it just acted as a diversion more than anything else the first time. I've printed off some info to take to the doc visit in a few minutes, so hopefully we can get a good strategy mapped out. I'm very fortunate in that my physician is the one who recognized what I really have and wants to be aggressive in treating it....seems most people who have CH are misdiagnosed for a long time. From my reading on this, it seems that oxygen levels are a primary factor in triggering and resolving the attacks. I'm curious if some sort of light excercise just to get an increased blood flow would help. Also, what is everyone's experience with obtainint oxygen tanks and dealing with their insurance companies? Once again, thanks so much for the advice that's already been shared and I look forward to getting to know everyone better and helping in anyway that I can.

Title: Re: Tennessee Newbie
Post by jokrs2 on Mar 15^th, 2005, 11:23am

I took the money I'm saving by not buying morphine & imitrex and ordered a bowflex. Exercise here I come! ;;D

Title: Re: Tennessee Newbie
Post by sandie99 on Mar 15^th, 2005, 1:05pm

Welcome to CH family, Chris! :)
Sorry that you have CH... But here you can find lots of info and support.

Best wishes & PFdays,
Sandie

Title: Re: Tennessee Newbie
Post by chris_a_tn on Mar 19^th, 2005, 11:33pm

UPDATE: I am every so thankful that I have a wonderful doctor who was first able to diagnose my CH and second was very astute on the condition and the treatments. Had my appointment Tuesday morning and he put me on Predizone and Verapamil (sp?). Had one headache early that afternoon (didn't rush on like a CH attack, but the pain was bad), and ever since then....ZERO headaches. I'm truly amazed and blessed. Yesterday was the first day that I have actually felt human in a while now. I'm curious now about other people who have had success with the Predizone and how things were when you were weened off of it. Did the headaches stay away, or did they come back immediately? One other thing about my doctor....I got a call later that afternoon from a local medical supply store saying that they had an oxygen tank for me to come pick up at no charge to try and see if it will help. My doctor had contacted them and they let me give it a shot as a favor to him. The thing is, I don't even know if the tanks help because I haven't had an attack since. Very fortunate and very blessed and very happy right now. Thank you to everyone who has posted to my thread and to the other threads...the info on here is truly amazing and has helped educate me on what this monster is. I know I'm always going to be dealing with this for the rest of my life, but it is a great thing to know what to do next time they come.

Title: Re: Tennessee Newbie
Post by E-Double on Mar 19^th, 2005, 11:41pm

glad to hear it!!!

Stay armed!

E.

Title: Re: Tennessee Newbie
Post by chris_a_tn on Mar 19^th, 2005, 11:43pm

I'm on a mission to whip this thing. You start losing hope when it hits day in/day out, but getting a break gives you time to regroup and re-energize. I dread the next headache (I know it WILL come), but I'm ready to go to battle now.

Title: Re: Tennessee Newbie
Post by lionsound on Mar 20^th, 2005, 5:16pm

Hi Chris!
I hope you fetched that O2 tank anyway. Couldn't hurt to have it around. It is a great help for a lot of us.

So happy to hear that things are going well with your doc and that you are enjoying some Pain Free time!

-lionsound

Title: Re: Tennessee Newbie
Post by survivor13 on Mar 22^nd, 2005, 12:12am

You whipped it the day u came here! (it always goes away).

Title: Re: Tennessee Newbie
Post by chris_a_tn on Mar 25^th, 2005, 2:56am

I did get the O2 tank, but fortunately I haven't had to use it yet. (my tank supplier has been suprisingly wonderful to work with). I went off of the Prednisone (was only on it for a week) on Tuesday, and still on 180 mg Verapamil for the next couple of months. I noticed Tuesday night and especially on Wednesday that I had "that feeling" in my head like I was going to have one later, but luckily nothing every materialized at night. Keep your fingers crossed that I stay on this path.