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        Cluster Headache Help and Support >> Getting to Know Ya >> Hi New this 
        
(Message started by: createdforjoy on May 12^th, 2008, 8:20pm)

Title: Hi New this
Post by createdforjoy on May 12^th, 2008, 8:20pm

:o
[size=2][/size]Hi. I am new to the Cluster Board. I have had clusters since 2000 when I had a head injury from an MVA. I ama six weeks into a series niw and still without out neurologist as I recently moved form Saint Louis to WI.
I am taking Gabapentin 1800mg,Verapamil 240mg, Zofran 8mg BID, oxygen and Dilaudid for rescue. I have allergy to ergots and to tricyclic antidepressants. Maxalt and the like do not work for me.
I am feeling rather discouraged because I want to get back to work and life again. I can not lie down as this triggers the HA to start and though Iamdownfrom4-5 a day at 2-3hours a piece to one to two; I am still spending my nights sitting up . I am really hoopeful that I will find a nuero guy who will just transect the nerve and Ican move forward.
I am sure some of you can relate.

Title: Re: Hi New this
Post by DennisM1045 on May 12^th, 2008, 8:44pm

Hi and welcome!

Sorry to hear about the rate of hits. Sounds like you're having a tough ride. When you do find a new Neuro, talk to him about a new preventative regime. While cutting the number of hits in half is good, I don't know if I'd call that success.

Lithium? Some here swear by it.

Verapamil? 240mg is pretty low. I didn't find relief till I went up to 400mg. Had to titrate up real slow to avoid the side effects too.

When you say
Quote:

Maxalt and the like do not work for me.

does that include Imitrex Injections?

I read Dilaudid and I cringe. Can't touch narcotics when in cycle myself. More trigger than relief and it doesn't touch the pain. Everyone is different.

I hope you find some relief soon.

-Dennis-

Title: Re: Hi New this
Post by DennisM1045 on May 12^th, 2008, 8:49pm

Just read your Verapamil experience in another thread. Forget I asked ;)

-Dennis-

Title: Re: Hi New this
Post by createdforjoy on May 12^th, 2008, 10:21pm

;)
I have had cardiac sensitivity to DHE and Maxalt. I have not tried the Imitrex for thatreason. I hate the narcotics and I have tried very hard to avoid them. None of the others work at all. I don't bother most of the time but sometimes I can just get centered enough to stop moving and breath.
I have decided I need to up the 02 and ( I am only7-10 per NRB) perhaps a higher flow rate would help.)
Has anyone considered the occipital stim or a surgicaL lintervention? It just seems to make sense to never need todeal with the pain again. I would gladly go under the knife :)

Title: Re: Hi New this
Post by createdforjoy on May 12^th, 2008, 10:46pm

Another quick question? How has anyone managed working with chronic cluster?
I just can not keep rocking and banging all night , then trying to work and keep up with kiddos. I am on FMLA now but I am really concerned about dealing with my employer.

Title: Re: Hi New this
Post by RichardN on May 13^th, 2008, 1:07am

Hi and Welcome

Yes . . . definitely up the flow-rate on the 02 . . . 12-15 lpm through a non-rebreather mask (the one with the bag). I can't use Imitrex due to some artery blockage and high cholesterol . . . could be very dangerous for me . . . so 02 is my miracle abortive.

I used to use Verapamil, got some relief at 240mg . . . upped to 480mg, then settled on maintenance dose of 360mg. Many here use much higher doses. I quit using Verapamil four years ago when my BP got uncomfortably low.

I use water therapy (see "water X 3" . . . link on left). It's NOT easy to do, but I'm convinced this has helped me greatly reduce the frequency/intensity of attacks.

Surgery, from all that I've read the six years I've been here, does not seem to have a very good success rate. There have been members here who had a "tri-nerve cut", with initial success on the affected side, only to have CH return on the other side . . . still have CH on one side, and left with a "dead" face on the other . . . for life. I'm sure there are advances being made . . . but not enough (that I've heard about anyway) to consider that option just yet.

We know the pain . . . we know the frustration . . . we know the very real FEAR of the beast. Keep reading, keep asking. One of my favorite mottos on this board is, "Nothing works for everyone, but SOMETHING works for everyone". . . and here you have a very good chance of finding the "something" that works for you.

Be Safe, PFDANs

Richard

Title: Re: Hi New this
Post by mezza on May 13^th, 2008, 4:59am

Hi -

sorry to hear of your pain- look like you got some good advice already- you asked about working during cycle. I have worked this whole cycle and have two young kids too. Early on when i was in rough shape i was exhausted, cranky, anxious etc. ( this is before I got on the proper meds and was getting hit 2-3 times a day) To get through i just came to work prepared. I went to bed at my usual time so that i coudl get the hit over with and go back to sleep. I drank coffee upon waking, red bull during the day , and brought my abortives to work with me. I had strong shadowing during the day but luckily my hits always happenned in the evening and at night. It was tough- seems like a blur, but got through it. Can't remember anything i did or said during that time though- ;;D

If I would have had more sick time to take etc- i would have used it. You will get relief soon- hang in there and rest!!

kelly

Title: Re: Hi New this
Post by DennisM1045 on May 13^th, 2008, 11:43am

7-10lpm isn't going to get it done. You need 12-15lpm to kill off an attack. There is some work going on with demand valve regulators seeing flow rates in the 60s.

The higher the flow rate the quicker you kill an attack.

I work full time and then some. I'm in an office environment and use O2 right in my cube. At the start of a cycle I let my cube mates know what's going on with an e-mail and they know when they hear the squeek of the regulator nut tightening to leave me alone till it's over.

I've never had anything but support from them.

-Dennis-

Title: Re: Hi New this
Post by Brew on May 13^th, 2008, 11:47am

on 05/13/08 at 11:43:28, DennisM1045 wrote:

7-10lpm isn't going to get it done. You need 12-15lpm to kill off an attack.

Actually, it depends on the individual. I rarely go over 10 liters per minute. But when in doubt, go higher.

Title: Re: Hi New this
Post by DennisM1045 on May 13^th, 2008, 11:48am

on 05/13/08 at 11:47:08, Brew wrote:

Actually, it depends on the individual. I rarely go over 10 liters per minute. But when in doubt, go higher.

Thanks Brew. I didn't know that.

-Dennis-

Title: Re: Hi New this
Post by Brew on May 13^th, 2008, 11:51am

I think it's kind of a conservation thing with me. Also may be reflective of how stressed or panicked the person may be when they finally get on the O2. I kind of force myself to be calm, cool, and collected when I have to hit the gas.

Title: Re: Hi New this
Post by DennisM1045 on May 13^th, 2008, 9:37pm

I don't know. I'm not one to panic but when I'm on the gas anything less than 12lpm and I feel like I'm suffocating! Like I said before, we're all different.

It might have something to do with lung capacity. I'm looking for a bigger bag than the 1L bag I have now. I can completely empty the bag twice without exhaling.

-Dennis-