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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> i'm new here and live with a clusterhead!
        
(Message started by: ktrygrl_sc on Oct 15^th, 2005, 4:20pm)

Title: i'm new here and live with a clusterhead!
Post by ktrygrl_sc on Oct 15^th, 2005, 4:20pm

hey everybody,my name is stephanie(27).my husband(27),has cluster headaches.we have 2 boys,5 and 2.we've been together almost
6 years and he's had them the whole time.he said he started having them about a year before that.it's awful!!
i've never seen anything like it!!the only thing that helps a teeny tiny bit is a scolding hot shower.it doesn't make the headache go away,just helps with the pain.and when he gets them he blows his nose like a million times.he has them so bad that he blows out blood out his nose.he has them all the time through the year but they get worse when the seasons change.like now!he has them EVERY day.most of the time,a couple a day.his one eye starts turning red and watery(i can tell when they are coming),and it's like that one vein pops out.and then goes the head holding on that one side and walking with that side of his head over to that shoulder.last week he was in so much pain that he kinda blacked out for a second and fell in the shower!nothing seems to help.he doesn't have ANY kind of insurance so he can't afford to go to a neurologist.he went one time yrs ago and they told him it was clusters.i've seen him take pill after pill.it doesn't work so he just won't take anything.but..the last 2 weeks he has took a couple lortab 10's.they helped but he didn't won't to go that route.my cousin has prescription imitrex,the pills,and gave him 1.it worked.he has now just started trying the Maxalt,the one that dissolves on the tongue,it knocked it out in 15 minutes..but then he had another..so we don't know yet.the problem is...someone else is having to get them.you can only get 10 a month!!so..i don't see that helping too much!and we just don't have the money for him to get them his self.these things are running our lives!!we can't even go out to eat because guess what...here one comes!the doctor said he would grow out of them..but we don't think soo...

sorry this post is sooo long.any suggestions is greatly appreciated.i also read about the water deal...

Title: Re: i'm new here and live with a clusterhead!
Post by BobG on Oct 15^th, 2005, 6:59pm

Sorry to hear your hubby is one of us. And not having insurance sucks.

There are some treatments that may help him and not put you in bankruptcy.

Click this for an alternative treatment.
http://www.clusterbusters.com/

Go to the Medications, Treatments, Therapies section and read about Kudzu

Has he tried Oxygen? Click on the ‘oxygen info’ button on the left side of your screen.

Please stay away from the Lortabs or any of the pain killers. They’re dangerous and ineffective for clusters.

And your post was not too long. Go ahead and say what you need to. We have all day.

Title: Re: i'm new here and live with a clusterhead!
Post by Kris_in_SJ on Oct 15^th, 2005, 6:59pm

Hi Stephanie,

Glad you found us - but sorry you had a reason to. Clusters are one of the most painful syndromes known. There are certainly treatments available to make cycles more bearable, shorter, and less intense - however, having a lack of financial resources certainly makes those treatments hard to get.

I got this link from a fellow sufferer. Perhaps it might help. It's a way of receiving meds even though you have little money. Check it out.

http://bridgestoaccess.gsk.com/

You might also want to check into the oxygen info to the left. A welder's O2 setup can be had for much less than prescription O2, and oxygen has proven to help many people here abort a CHA. However, it must be used correctly, as described in that link.

I'm so sorry your sweetie is suffering ... keep being a strong supporter. He needs you. Read all you can, follow every link offered you, and know that all of us couldn't survive without those who love us and support us when we're suffering. PM any time you need some help or advice.

Hugs,

Kris

Title: Re: i'm new here and live with a clusterhead!
Post by ktrygrl_sc on Oct 15^th, 2005, 9:22pm

well...i have to admit..i've read on ch before,but guess i really didn't think it was THIS bad.god,i feel so sorry for him.i get mad cause that's ALL i ever here from him.his head hurts..the kids need to be not so loud,i'm going to the shower,and all the long waiting before we can go eat..cause his head hurts.but after this,i feel like crap!!
does anyone elses' nose bleed like that?he has a couple cluster's just about everyday!it's bad.he started having them at 17! he's had them longer than i stated before.i read you can buy the kudzu pills.but which ones?i seen a couple.what about the magnesium pills?or does he just need to try the kudzu by itself at first?

Title: Re: i'm new here and live with a clusterhead!
Post by BMoneeTheMoneeMan on Oct 15^th, 2005, 11:18pm

Hey ktry
Welcome.
I mentioned on the other thread, taking the benadryl before bed along with melatonin helps with the runny eye and stuffy nostril for me.
I tried maxalt too, but i think it comes in such a high dose, it kicked me into a rebound headache almost immediately and it really got bad. Maybe if you ever get any more maxalt, try to only take half of the dose. If you get 10 a month and only take a half a dose at a time, you get 20 uses.
NO PAIN MEDS. Most of us also used to take dozens of OTC and prescription pain meds, they tend to hurt more than help.
I really hope you can get relief soon. I know how hard it can be on the family.
PF wishes to hubby
BMonee

Title: Re: i'm new here and live with a clusterhead!
Post by Gator on Oct 16^th, 2005, 12:51pm

Hello there and welcome to the asylum. I am sorry to hear of all y'all are going through. CH is hard on the sufferer, but it affects the whole family. Most doctors are really pretty clueless when it comes to ch. A lot of people come here saying their doc said they "would grow out of it."

It's hard enough being a clusterhead with the medications. To do it without is just terrible. Alternative treatment options were mentioned above. Read about other peoples' experiences with them in the Medications Board.

Along with the Bridges to Access program that GlaxoSmithKline operates, there is an organization with links to hundreds of other programs that assist people getting the medications they need. Look at this website for more information:

https://www.pparx.org/Intro.php

Again, welcome to the website and to the family.

Mike

Title: Re: i'm new here and live with a clusterhead!
Post by Barry_T_Coles on Oct 18^th, 2005, 9:40pm

Hi Stephanie

Welcome
Sorry your hubby is getting hit like this, like others have said read all you & hubby can that is available here there is a wealth of info to help you through.
The more you know about this the better you are able to handle it.

As Gator said CH not only effects the sufferer it hurts those close to them as well,I know my wife's heart bleeds whenever I get hit, as much as she would love to be able to do something for me she knows there is nothing she can do other than support me and that is important to us.

And yes the beast visits Australia whenever it's not beating the hell out someone somwhere else

Stay Brave and read all you can.

Kind Regards
Barry

Title: Re: i'm new here and live with a clusterhead!
Post by ClusterChuck on Oct 21^st, 2005, 8:50pm

Hi, Stephanie! Welcome to the insane asylum!

Sorry hubby is having such a hard time of it. Do all you can to get oxygen. It is not that expensive, even if you do get the medical tanks. But if you can't get the medical ones, don't be afraid of the welding tanks. It is the same oxygen. If welders do not have 100% pure oxygen, they can't get a good weld.

But, it MUST be used the proper way. Read the tab on the left "oxygen info" and also, in the medical section, read the thread called "Oxygen Usage Tips"

Oxygen is cheap, almost no side effects, and VERY effective.

BTW, I don't live that far from you. I am in Eastern North Carolina. If you or your hubby want to talk to someone, PM me your phone number, and I will call you.

Also, we are going to have a local get together here, soon. We call it the Virginia, Carolinas group, but we get people from other states that come too. We will let you know, when we set it up. Please try to come! There is NOTHING like meeting other clusterheads! And don't worry about getting hit, while there. There is not a better place to get hit, than with other clusterheads. There is always oxygen at our gatherings.

Again, WELCOME aboard! Sorry you have to be here, but you are now in the right place.

Chuck

Title: Re: i'm new here and live with a clusterhead!
Post by gfdfirefighter on Oct 26^th, 2005, 12:25pm

Hi Stehanie

I have been dealing with Cluster headaches for 15 years. The first time I got them my wife and I where married for almost five years and she thought I was have a stroke as a matter of fact so did the doctor in the ER I just thought i was goig to Die well after 21 years of marrige she just looks at me and say's O sh## there back.
They hit me like clock work every 5 years I have been dealing with my fourth bout since august. We all know what your husband is going throught and I hope he gets relief soon. As a Firefighter if you have a fire station near you with a medic unit you can go there and they will give your husband O2 no charge just let them know they a cluster headaches becuse the first thing they will think is your husband is having a stroke and want to transport him to a hospital. But remember most cases O2 only works if you can get it with in the first 5 minutes of an onset. I have an oppintment with a nero next week i will let you know what kind of theripy i get this time.

O try a cold pack on the affected side have him place it right on the temple area this has been working for me latley

Smiley

Title: Re: i'm new here and live with a clusterhead!
Post by jason1212 on Oct 26^th, 2005, 2:55pm

Hi Stephanie, sorry you're reading this right now, but you are in the right place. The above posts contain some great advice, what I have to add is this, oxygen is a great bet and we've told you how to get your hands on it, now, if you do get the O2 you're also going to want to get a non-rebreather mask www.clustermasx.com they're $25 also you'll need a regulator that can deliver at least 15 lpm. The only other advice I can give is hang in there don't let the bastard win. What your hubbie needs right now is support you have to be strong for him. If you're hubbie is like me he feels horrible that he is such a burden on his family. Try to not get frustrated or mad this only makes him feel worse. Be patient with him remember it's not his fault and I'm sure he would spend his last penny to stop his headaches. That's pretty much all I have, I wish you guys the best of luck.

-Jason

Title: Re: i'm new here and live with a clusterhead!
Post by Jonny on Oct 26^th, 2005, 5:57pm

on 10/26/05 at 14:55:51, jason1212 wrote:

if you do get the O2 you're also going to want to get a non-rebreather mask www.clustermasx.com they're $25

Spending that kind of money on a mask for something you dont even know is going to work is bullshit!!

Steph, you can get a non rebreather mask at most medical supply stores for about $3.00

If it turns out that 02 works good for the hubby, then the Clustermasx is a good investment.

....................................jonny