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Topic: help with getting treatment..please (Read 646 times) |
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ktrygrl_sc
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i live witha CLUSTERHEAD!!
 
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help with getting treatment..please
« on: Oct 15th, 2005, 10:50pm » |
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my hubby was diagnosed a few years back with clusters.
we have 2 boys,2 and 5.and not much money.no extra after the bills and taking care of the kiddos.he started having clusters at 17 and he's 26 now.he never has been treated cause we don't have the money.so..he's not had any medicine prescribed to HIM in 9 yrs!he's tried lortab 10's, 1 imitrex,1 maxalt,and tons of over the counter.he said the imitrex worked,but it was only 1 pill.
anyway..does ANYBODY know where we could get some help with getting HIM some help? these things are getting worse with everyone he has it seems like!he usually has at least 2 a day and they are BAD.he has them all year.it is wearing on our family 2.i just want some relief for him and believe me i know he does too.
we are in south carolina and would appreciate any help!
i've read about the kudzu..i'm going to see if maybe the gnc carries that.thank ya'll so much!
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ktrygrl_sc
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KMT
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Re: help with getting treatment..please
« Reply #1 on: Oct 15th, 2005, 11:04pm » |
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Welcome first of all but truely am sorry that you have the misery of the beast as well. Glad you have found us.
1st my one suggestion would be O2 read the thread on the left for proper ways with the nonrebreather mask and all. Some here can help you with the way to get a regulator and some suggestion have been given if you can't afford O2 with insurance then there is always Welders O2. Others will be along soon to help with multitudes of advise.
Has he seen a doctor some of them have samples of imitrex injectables that you could use the tip to the left to increase the amount of dosing. A preventive would be helpful such as Verapamil and a prednisone taper to help. The Trex it self is the abortive as well as O2.
Keep us posted and ask away many have tons of information this just a few. PFDAN to the hubby take care of you as well... There is also a support area
Kim
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rextangle
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Re: help with getting treatment..please
« Reply #2 on: Oct 15th, 2005, 11:07pm » |
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Ok, have you considered oxygen? You can get welder's 02 and ask Mr. Happy about getting a regulator and a mask.
Ice on the back of the neck and the side that hurts can help.
Some folks like heat better than ice.
Make him drink lots of water...
Caffeine is also recommended. Strong hot cup to help the shadows...
I'm giving you ideas about stuff you can do right away until you get meds...
Keep asking questions,
Rex
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BMoneeTheMoneeMan
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Re: help with getting treatment..please
« Reply #3 on: Oct 15th, 2005, 11:08pm » |
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Hey Ktry
Sorry your hubby is having a hard time. My wife and I have a 5 year old little cutie and i totally understand how it can be trying on a family. Just try to keep the collective chin up.
I am guessing you have no insurance to help?
Ok, get melatonin and benadryl. Take 9 mg melatonin and 50 mg dyphenhydramine (benadryl or generic) 1 hour before bed. It seems to provide some relief and substantially better nights for lots. They are cheap. Bout $10 for melatonin, $5 for generic benadryl.
LAY OFF THE PAIN MEDS! no vicodin, no excedrin, no advil no nuthin. Pain pills have no effect and tend to make it worse.
Oxygen tends to be pretty cheap compared to things like imitrex. Has he tried that? I am not exactly sure how much it would cost you, but my supplier says it costs $31 a month for me to have unlimited oxygen. ( my insurance pays most of that)
PF wishes to hubby
BMonee
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BobG
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Re: help with getting treatment..please
« Reply #4 on: Oct 15th, 2005, 11:18pm » |
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All great advice from those above. Kim mentioned something important, support for you. Go over to the Supporters Corner section. There are some wonderful people there. They have all been where you are now and can be a great comfort to you.
Try to get your husband to post here. The more we learn about him the more we can maybe help him.
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ktrygrl_sc
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Re: help with getting treatment..please
« Reply #5 on: Oct 15th, 2005, 11:20pm » |
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no insurance.where do we get the meletonin(sp),and where can we get the oxygen?I have medicaid,but he don't have anything. reckon i could get the oxygen
through MY medicaid?thanks ya'll. 
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ktrygrl_sc
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E-Double
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Re: help with getting treatment..please
« Reply #6 on: Oct 16th, 2005, 1:53am » |
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You can get melatonin @ any pharmacy where the vitamins and suppliments are stocked.
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sandie99
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Re: help with getting treatment..please
« Reply #7 on: Oct 16th, 2005, 3:40am » |
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Lots of ((((((((vibes)))))))) to your husband & whole family from Finland!
I'm glad that you found us. I hope that our American clusterfamily members can help your family out.
Best wishes & warm welcome,
Sanna
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Jasmyn
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Re: help with getting treatment..please
« Reply #8 on: Oct 16th, 2005, 3:49am » |
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Welcome here and hope you find help soon.
This site has the best support and information you can find about CH.
Vibes to your husband and your family.
Jas
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Jazz 
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marty
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Re: help with getting treatment..please
« Reply #9 on: Oct 16th, 2005, 4:46am » |
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Hi ktrygrl_sc
Sorry to hear that you guys are going through such a hard time. There is a program called the Medicin Program that will help you get free meds from the drug manufacturers.
Check it out on http://www.themedicineprogram.com
According to what I found out, they have a simple application form to send in, but it can also be done by a doctor and when the doctor does it, the process is speeded up.
I don't know that much about this program but I am sure that someone on this board does and can tell you more.
Best wishes from Texas
Marty
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KMT
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Re: help with getting treatment..please
« Reply #10 on: Oct 16th, 2005, 9:57am » |
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Quote:no insurance.where do we get the meletoninover the counter in the vitamins(sp),and where can we get the oxygen?Any welding store if unable to get medicaidI have medicaid,but he don't have anything. reckon i could get the oxygen
through MY medicaid?thanks ya'll. |
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aka...................................................... KimY
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Dragonwynd
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Re: help with getting treatment..please
« Reply #11 on: Oct 16th, 2005, 10:04am » |
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First thing is I am sorry for both your husband and your family. I dont have insurance myself so I know how it is trust me, I spent my whole savings last year because of these damn things  But ther is light at the end of the tunnel. Glaxo smith kline has a program called bridges to access. Where they will send you free imetrex. I use the vials and a diabetic syringe, this way I can control how much I use and it lasts longer ...... Go online and read about it then get him to a doctor even if its a health clinic , they should fill out the paper work for you and can get vouchers for you to get him some right away till the other arrives... Hope this helps you out, wish I could do more....... 
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jcmquix
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Re: help with getting treatment..please
« Reply #12 on: Oct 16th, 2005, 1:15pm » |
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Hi ktrygrl_sc..
I really do not have anything to add to the information given above.. I just want to say Welcome Aboard and sorry that you had to find us, but this is the best place in the world to be for CH...
I am a CH'er and my wife is my Supporter, I just want to say Thank You for being there for your Hubby...
There will be times when he might want to hide and be alone, just give him the space that he needs and when the BEAST is sleeping he will be Normal again...
The BIGEST part of getting through this togeather is sit down and talk to your Hubby, when he is Pain Free and find out what his needs are when he is being attacked by the BEAST...
I like to be left alone and in a Quiet Dark Place until my battle is over, so thats normal, don't take it personal.. its a CH thing not wanting to be seen or witnessed when being attacked..
Now also.. take some time for yourself, its very stressful supporting a CH'er.. make time for yourself and get your Rest & Relaxation also... You need one of you to be well rested and thinking clearly, right now it won't be your hubby... Its gonna be You...
Don't hold your thought's and feeling's in, as Bob said go over to the Supporter's Corner and do some posting...
You can Rant, Rave or just ask questions and get some answers for yourself as well...
Next, get the Hubby to come here and meet us, we are all Survivor's thanks to each other, its nice to talk to someone who truely knows what you are going through, that brought me alot of comfort and relief...
You Both will be in our Prayer's & Thought's
God Bless & PFDAN's
Charlie
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Racer1_NC
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Re: help with getting treatment..please
« Reply #13 on: Oct 16th, 2005, 3:24pm » |
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The makers of Zomig (AstraZeneca) refer people that need assistance in obtaining meds to this site https://www.pparx.org/Intro.php. Worth a look.
Plus...I do not know if this would work for your husband as there is a one trip to the clinic required, but if he's game for a road trip, I urge him to investigate this as well:
Quote:The New England Center for Headache (NECH) http://www.headachenech.com/ is still seeking at least 9 additional subjects for the Zomig /Cluster Headache trials.
Patients need not reside in the northeast but must make one visit to the clinic which is located in Stamford,CT, the rest can be handled via email and the USPS.
Anyone even close to being "in cycle" that is interested in participating in the study should contact Lori Choyce at lc@nech.net for further details on what is involved with the study and information on how to participate.
OUCH urges everyone that can help with this important study to step forward and help the NECH research team, being able to complete these last 9 people could possibly open avenues to research in other areas in many ways.
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BarbaraD
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Re: help with getting treatment..please
« Reply #14 on: Oct 17th, 2005, 6:42am » |
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Go to the site Marty put up and get an application and fill it out. Take it to your doctor to sign and send it in. They'll give you up to six months at a time free -- there is a $5 charge for the pharmacy to fill it, but compared to the cost of our meds that's cheap.
O2 is great for most of us - talk to your doc about it. Be sure he gives you a regulator that will go to 15 - Put the flow rate at 10-15 for 15 minutes (don't do more or you'll dry out your lungs). Usually if it's going to work (and it doesn't all the time) it'll do it within 5 minutes or so.
For now, hit the strong coffee at the first onset. I've been chronic for years and find that the coffee helps more than anything if I get to them quick enough.
Keep frozen peas in the freezer and grab them when you get hit big time. They're easy to put whereever you need them.
Drink water, water water. Look to the left for the water X 3 and do it -- it does help a lot of people.
I don't even try to sleep without melatonin any more. 9mg at bedtime and you get some rest. It takes a couple of weeks to start working, but after that it's great.
Good luck and hope you are pain free soon.
Hugs BD
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teric
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Re: help with getting treatment..please
« Reply #15 on: Oct 22nd, 2005, 7:19pm » |
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First I would like to say that you have come to the right place. I just found this site a couple of weeks ago and the people here have really helped.
My insurance company will not pay for more than 6 pills (Ropal or Zomig) in 23 days. When your having 2 & 3 CH a day the 6 pills doesnt last long. I took the advise of many of the kind people on this site and got O2 and a non-rebreather mask. I had to get a prescription for the O2 and purchased a non-rebreather on ebay for $7.00.
The second I feel one coming on I gulp down a Red Bull and put the mask on. I take 9 mg of melotonin and 50mg's of Benedryl before bedtime. (Thanks Mr. Happy for that suggestion).
As another member told me. This time will pass. Hang in there. Good luck to you all.
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drivin_blind
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Re: help with getting treatment..please
« Reply #16 on: Oct 27th, 2005, 10:35am » |
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I was very fortunate. My Dr. is also a very close friend of mine. He researched all he could about CH's. I have found as much information (or more) on this site, as he did over months. Every time something new comes up, I will copy it off this site and let him review it. You will not find more support anywhere than you will here. We all feel for your husband. I've lived with this condition for over 30 years. Some here suffered longer. Best of luck. Sometimes sitting back being helpless is worse than the suffering. (my wife has 3 discs ruptured in her neck. Waiting for FDA to authorize mutiple replacments. It's like watching someone you love die). Dick
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madaline
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Re: help with getting treatment..please
« Reply #17 on: Oct 28th, 2005, 3:45am » |
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HI Kuntrygirl, You have had real good advice so far. To add to it, if you can get to a hospital that has a good headache clinic, the fees are usually on a sliding scale (you pay according to your financial status). In NY, the Montefiore Hospital has an excellent, specifically Headache Clinic, with nationally renowned doctors. Try calling them to get the name of a clinic like that in your area. Be aggressive in seeking help. Good Luck. Madaline
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StressFree
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Re: help with getting treatment..please
« Reply #18 on: Nov 5th, 2005, 3:30pm » |
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Verapamil is fairly cheap and is a great help for many, but it doesn't help everyone. Every case seems to be different with cluster headaches. Encourage your hubby to keep trying everything recommended until something seems to help significantly. The Kudzu is supposed to be similar to verapamil (blood pressure medication) and also fairly cheap. Make sure not to try everything at once though! Some meds will take a couple of weeks to give full effect. I know it is very hard to wait that long. Abortives like Maxalt and Imitrex are very expensive but tend to work better than pain pills for a given attack. Otherwise the ice and oxygen has helped many attacks for me (Not everytime though). A controversial treatment can be found on a web site www.clusterbusters.com regarding different kinds of seeds that are similar to psilocybin mushrooms. Some have had success in breaking headache cycles by taking these in very small quantities. Hang in there. Prayers for you and yours, Rich
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Beastfodder
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Re: help with getting treatment..please
« Reply #19 on: Nov 8th, 2005, 5:26am » |
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Hi ktygrl,
Heart goes out to you and your family. For me with a 4 year boy it's not the pain that gets me the worst - it's the thought of him seeing me in pieces that hurts the most.
As you'll see there's a lot of advice on meds here already. All of it good. For me an Autumn episodic for over 7 years this is the breakthrough year where the beast SEEMS under control.
For that I've two things to be grateful for (using this site is taken as read) and that is a good non rebreather mask with O2. The second thing is the clusterbusters website.
Speak to these people and they can help - it's the only thing that's really shifted my clusters and with the O2 has no nasty side effects. Finger's crossed it works for you too.
Nani a member here is also chronic - and her thread on 'what I'm trying now' is an interesting read. Let's hope it sorts your hubby's head out and get back to a normal family life. Just keep on doing what you're doing - there are answers out there and support for you here.
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O2 and clusterbusters - naturally
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