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        New Message Board Archives >> Medications, Treatments, Therapies 2004 >> can't function anymore
        
(Message started by: shani01 on Aug 10^th, 2004, 3:21am)

Title: can't function anymore
Post by shani01 on Aug 10^th, 2004, 3:21am

I am in my 4th week of an episode and am soo drugged up on vicodine and coedine that I can't function on top of the CH's that I get 2-3 x's a day w/the shadow's all day long. I have a 3yr. old and a husband who are suffering daily w/me. I feel like a horrible wife and mommy. I was given the new zomig nasal and it worked wonders at first but now seems to be wearing off quick. I am taking it about every 12 hrs. NOTHING is helping. I've thought about doing a total detox thing where I clean out my colon & everything. I am up to 300 mg of Topamax daily and that put me into remmision last time around but this it hasn't worked. I am at my wits end. Please help. [smiley=huh.gif]
Thanks
Shani

Title: Re: can't function anymore
Post by don on Aug 10^th, 2004, 7:23am

What you need to detox from is the vicodan, codiene,. and the Doc who Rxed them.

Read all you can about meds on this site and start looking for a CH knowledgable doc.

Title: Re: can't function anymore
Post by lionsound on Aug 10^th, 2004, 7:42am

Shani,
I know exactly how you feel. I wish I lived close enough to come over and hug you and help you out. You are a great mom and wife. Your family at home and this family here loves you very much.
Sent you an IM.
Take care.-lionsound.

Title: Re: can't function anymore
Post by kimh on Aug 10^th, 2004, 8:34am

Shani,

Oh boy - did your post bring back memories :'( I too know exactly how you feel and am sending you a HUGE hug!!!

I know from experience that all the pain-killers in the world will not help your clusters*** I used to walk around in a drugged up fog - could hardly talk -........and looking back - they were some of the absolute worst cycles i every experienced. It's a viscious cycle (pardon the pun).

There is no cure for clusters. But there are things we can do to endure more effectively.
Your doctor should know better.....
Here is my current battle plan: o2 as prescribed HERE, maxalt mlt 10 (triptan) dissolving pill, ice paks (frozen peas), strong coffee and my teletubbies beach towel (lol- my home-made neck scarf for ganglion 8))
I set up a room in my house where i go that will not disturb sleeping family members.
And last, but perhaps most importantly, i share my thoughts and experiences with this family :) THAT is my most effective weapon for coping with this disorder***
Please feel free to e-mail me @ kimskitchen529@aol. Thinking of you and sending you pf wishes :)

Title: Re: can't function anymore
Post by IndianaJohn on Aug 10^th, 2004, 9:32am

Mega vibes and PF wishes. Stay strong, you CAN get through this.

Get off the pain killers, they cause rebounds

Best wishes

Title: Re: can't function anymore
Post by notseinfeld on Aug 10^th, 2004, 10:33am

Painkillers will not put a dent in your condition and likely add to the depression you're experiencing w/the latest cycle.

Get a new neuro who knows what's happening and jump on the Oxygen tank pronto! It has an extremely high efficacy rate and it should abort your h/a within 5-15 minutes. Plus, there's no rebound so commonly found with the triptan abortives.

Prednisone will typically provide almost immediate relief but only temporarily. Verapamil is a first line defense and has little side effects. Barely anything works for anyone but there are some trial steps you could implement immediately to make your life more bearable and keep you from becoming a bear!

clusterheadaches.org (OUCH) has a good list of common preventative and abortive scripts to try.

Good luck and you're not a bad wife or mother--just given a tough set of circumstances under which to operate.

Title: Re: can't function anymore
Post by Prense on Aug 10^th, 2004, 12:05pm

on 08/10/04 at 03:21:05, shani01 wrote:

I am in my 4th week of an episode and am soo drugged up on vicodine and coedine that I can't function on top of the CH's that I get 2-3 x's a day w/the shadow's all day long.

This is a bunch of crap! This should be considered malpractice...

Chris

Title: Re: can't function anymore
Post by UN_SOLVED on Aug 10^th, 2004, 12:10pm

I agree with the rest:

(1) Get off the narcotics.
(2) Find a doctor who knows how to treat CH.

Best wishes,
Unsolved

Title: Re: can't function anymore
Post by ex_pat_asia on Aug 10^th, 2004, 12:29pm

Shani,
The board is right...you must break the use of pain maskers and get a doctor that knows about clusters. The guy that prescribed those drugs to you is possibly sympathetic, eager to ease your pain, but is throwing gasoline on the fire.

I urge you to find a Dr. that will agree to get you set up with Oxygen as soon as possible. High flow rate (12 - 15 litres per minute (LPM) inhalation of Oxygen is effective in a high percentage of patients and could become your first line of defense...its pure...non-toxic...and may be a blessing.

If you need someone to talk to please message anyone on this board, they have all been there.

It is possible to have attacks that will breach any of the known therapies, but you need to start your exploration of a strategy with a Dr. that knows what the different therapies are and will work with you.

You can take the steps to stop this.

Title: Re: can't function anymore
Post by thomas on Aug 10^th, 2004, 12:37pm

You gotta get off the "shit", then your zomig will work better, I'm sure of it.

Title: Re: can't function anymore
Post by shani01 on Aug 10^th, 2004, 2:22pm

Thank you to everyone who has responded to me ::) It was such a joy to open my email this morning and see so many caring people who ACTUALLY know what I am going through.

The neuro did give me a script for the o2 but my f..ing insurance company wants to charge me $500 for it. We just can't afford that. We've already spent over $700 in meds this month. The money is gone. It's hard enough to keep food on the table. I can't work - I'm a full time student and lucky that my term doesn't start until 8/30.

My doc told me to go to the ER when I get an attack but it's hard w/a 3yr old to go at 1am. I can't have her put in the car. I can't drive so my husband would have to. I don't want to put her through that all of the time. :-[

I just want a preventive, like we all do. What is the deal with the insurance companies anyway?? Why do they have to charge so much for something that is our lifelines? Maybe we should take charge and start calling our local tv stations and have them do medical pieces on CH's. :D At least then the rest of the population would be a little more aware.

I send hugs to everyone. One day I'll be able to function and help others who are going through what I am enduring now. I can not thank you all enough for giving me a home where people know who I am and what I am experiencing.

Lots of Love
Shani

Title: Re: can't function anymore
Post by IndianaJohn on Aug 10^th, 2004, 2:35pm

Hi Shani,
Hope you're starting to feel better. FYI there are many agencies that do non profit advocate work for the underinsured and people that otherwise can't afford the meds they need. I don't know what your personal situation is, but if they can help, it might just be worth a phone call.

For what it's worth...

Hope you start feeling better soon, stay strong, you can get through this.

John

Title: Re: can't function anymore
Post by farmboy on Aug 10^th, 2004, 2:42pm

I HAVE TO AGREE WITH THE OTHERS HERE ,

YOU NEED TO GET OFF OF THE OTHER DRUGS.

THE ONLY THING THAT WORKS TO GET RID OF A CH IS IMITREX INJECTIONS WHEN IN CYCLE.

I AM ON INDERAL AS A PREVENTIVE AND IT SEEMS TO WORK WELL ON MY CH IN STOPPING THEM. SINCE I HAVE BEEN ON THAT I HAVE NOT HAD MY OCTOBER OR MY JANUARY CYCLES THIS YEAR. JUST HAD TO DEAL WITH THE JUNE/ JULY ONE THAT FOR ME IS THE STRONGEST ONES.

Title: Re: can't function anymore
Post by Ronny on Aug 10^th, 2004, 2:45pm

Hi,

I"m sorry you have to go thru this.

You have a real fucked up insurance system over there. I'm sure you can buy the oxygen and attributes for less then 500$. I know i can over here.

I hope you get relief real soon. And... stay of the pain killlers, they're no good for CH (like everyone else said).

;) Ronny.

Title: Re: can't function anymore
Post by Superpain on Aug 10^th, 2004, 2:50pm

Ditt, ditto, ditto...
Get off the shit.
Get a new doc.
Get some oxygen, it's much less than $500 here...

Title: Re: can't function anymore
Post by Prense on Aug 10^th, 2004, 4:16pm

on 08/10/04 at 14:22:09, shani01 wrote:

The neuro did give me a script for the o2 but my f..ing insurance company wants to charge me $500 for it.

O2 is much cheaper to buy outright. Piss on the insurance company and go talk to the O2 place. You might be very surprised at how much it is. Also, don't be afraid to take your prescription and shop around...

Chris

Title: Re: can't function anymore
Post by Superpain on Aug 10^th, 2004, 9:46pm

Welder's O2 is even cheaper if you're in a real bind.

Title: Re: can't function anymore
Post by shani01 on Aug 10^th, 2004, 10:22pm

Hi there everyone. Shani here again. I was wondering, IndianaJohn said something about nonprofit agenicies helping people out. How do I learn more about that? I could really use that info.

I was using the Imitrex injection and that does work wonders but it costs me $90 for 2 injections. I need to take an injection every 12 hours. There's no way we can afford that.

Where do I look into getting the welders o2. My husband I would most definetly do that. I have done it before and it has worked. I went to the ER once & it worked there too.

The last time I went to the ER the admitting nurse told me that I can't use them for treatment all the time. I'd have to work out a treatment program w/my doc. If I wasn't in so much pain at the time and in need of meds I think I would've kicked her ;;D

Hugs & thanks to everyone,
Shani

Title: Re: can't function anymore
Post by miapet on Aug 10^th, 2004, 11:14pm

Shani,
Look in the phone book, social service agencies . . .sometimes there's one that is like a 'first link' and can give you the info about all that is offered in your area. Next choice, call one that you are aware of (even if it's for senior citizens) and ask them . . hopefully, you'll get a caring worker who will tell you what they know. In most states, social workers have access to a book that lists all the agencies in their area (might only be one book for the whole office?) . . .anyway, that's a start. Your doc may also know (or one of his nurses/mas).
For the welder's o2 . . in welding supply shop, or place where they fill welders tanks (they also will fill other tanks, so you can ask the paint ball guys where they get their co2 *g*). In Oregon, it's a place called Industrial Supply. If all else fails, ask at a welding shop where they get theirs. I think, all you need to do is purchase a tank and regulator (mask/hose too). Just make sure you get a high flow regulator, as you want to be able to get about 15lpm.
I hope you find some relief soon . ..we agree, get rid of the drugs and the doc who wrote those scripts . . .they are probably not only making you too drugged to function, but also causing rebound h/as.
We're sending you lots of *positive energy & light*
miapet

Title: Re: can't function anymore
Post by IndianaJohn on Aug 11^th, 2004, 3:12pm

Hi Shani,

Miapet is correct. Social services in the phone book (social service organizations) is a good place to start. They might not be able to help directly but can put you on the path to someone that can. Also, if you belong to a church they might be able to help. Anywhere that they treat low income families would probably help too. There are also county trustees that can authorize this kind of expenditures. There are also many church affiliated organizations that help like catholic charities and luthern social services to name a few.

It may take some foot work on your part, but it may also only cost a phone call. It can't hurt to make the call. Many in my wifes family use these kind of services, so call around. And if one agency can't help, ask for info on one that can.

Best Wishes!

John

Title: Re: can't function anymore
Post by matthe on Aug 11^th, 2004, 3:14pm

Have you tried Oxygen? I waited for 10 years to try and find it to be pretty helpful.

Title: Re: can't function anymore
Post by E-Double on Aug 11^th, 2004, 4:49pm

Check out this site... It's the governments website to obtaining free or "cost efficient treatments.
http://www.hrsa.gov/osp/dfcr/obtain/OBTAIN.HTM

Good luck,
eric

Title: Re: can't function anymore
Post by Gator on Aug 11^th, 2004, 6:28pm

Hi Shani. Welcome to the best place in the world for information and support for cluster headaches. Like everyone else here, I feel your pain. I get a average of 3-5 myself both day and night. I'm sorry you had reason to look us up, but glad you finally found us.

One thing I noticed is that you say you are taking Zomig NS every 12 hours and were taking Imitrex Injections every 12 hours.

Are/were you taking them to abort an attack in progress or just taking them every 12 hours whether you had an attack or not hoping to prevent attacks?

The triptans in the form you mentioned are only good for aborting an attack in progress. Just thought I'd ask.

Again, welcome.

Gator

Title: Re: can't function anymore
Post by Superpain on Aug 11^th, 2004, 7:09pm

http://www.google.com/local?hl=en&lr=&ie=UTF-8&q=welding+supply&near=San+Diego,+CA&oi=localr

Title: Re: can't function anymore
Post by shani01 on Aug 12^th, 2004, 2:01am

First, let me say thank you again to everyone. I am overwhelmed with all of the amazing support and help. I need to thank some of you personally...

Chris...Thank you for the link to the San Diego welders supply. I will look it up right after I am done writing this. I will be out purchasing it tomorrow ;;D.

Eric...Thank you for the link to the governemt site to get cheaper meds. I will DEFINETLY be looking into that site and learning how to get my meds for less money. I am already out of my Zomig Nasal supply. It only lasted me 6 days - go figure! :o Shocking - I know.

Gator...To answer your ? about the Imitrex and Zomig regarding me taking them, not together mind you, every 12 hours - it was to abort. That is how often the flairs, as I refer to them, come on. I have a constant shadow all day or a brusing of the head/brain area on the left side while I am in an episode but like clockwork every 12 hours I get a CH. Sometimes it might take 13 or 14 hours for the next one to come on but then 12 hours after that one the next one comes right on schedule. When I used to inject myself my husband decided I could endure just about everything! After watching me inject myself every 12 hours for about 2 weeks, and I did this constant for 6 weeks, he started telling people that I was the strongest person he knew and it was at that point that he truly understood just how bad my condition really was.

Miapet...Thank you for letting me exactly how to purchase the o2. I wouldn't have known to get a high flow regulator if you hadn't told me. I am sure I have been told already but as every knows during an episode my mind doesn't always work correctly!

To everyone else, I feel so blessed to have found all of you as my friends, my guides & my teachers. I hope that one day I am able to help at least one sufferer the way that all of you have helped and continue to help me. I don't enjoy living with the devil or dancing with beast but I have gained a world knowledge and the universe has invited such amazing people into my life. I might suffer every six months for 6 to 8 weeks with horriffic pain but with all of you by side, the world doesn't look so bleak.

I send all of positive energy and light surrounded by a universal hug.

Shani