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Geordie Lass

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Chronic clusters
Jan 3^rd, 2011 at 2:59pm

I am new on here but am at my whits end. My son was diagnosed with Cluster headaches about 15 years ago. At the beginning he did seem to get a bit remission but for a long long time now he has about 3 a day.
His doctor didn't seem to be helping a lot so he went onto the internet and found someone who put him in touch with a clinic in london. The specialist there advised him to have Sumatripton injections and Verapermil. He went to his doctor but his doctor said he wasn't going to give him the injections as they would kill him. He got in touch with London and they demanded that the doctor gave him the injections. He has been taking these now for years.
The thing is now both his legs are swelling, he has shortage of breath. He cannot carry anything heavy. He can only walk short distances but is trying to keep a job down. He seems to me to be slowly dying. I'm crying as I'm typing this as its so awful not to be able to help your child.
He is 44 now but has lost all hope of getting any help. The Sumatripton works but eventually knocks him out and he sleeps for an hour or more. He tries to take only the Verapamil but ends up with the injection most of the time. It seems to be affecting his heart. He has an appointment with the doctor on the 20th jan but holds out no hope. He says he is not going to be able to keep his job shortly then he will lose his home. Thank you for listening.

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thebbz

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Re: Chronic clusters
Reply #1 - Jan 3^rd, 2011 at 3:11pm

Hello and welcome,
Take it easy. Your story is not unique. Your not alone. You are just down, but not out.
Here are some traditional treatments. Get some 02. The 02 is an abortive like imitrex shots only not quit so harmful. 02.02.
[url]http://www.plainboard.com/ch/chtherapy.pdf[url]

You still have many things to try and to do, there is lots of hope, you will manage and get to the point you can live with these.
the bb

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Geordie Lass CH.com Newbie Offline I Love CH.com! Posts: 7	Re: Chronic clusters Reply #2 - Jan 3^rd, 2011 at 3:29pm Thank you for your reply, I should have told you that he has already tried O.2 and Oxygen and loads of other things but thank you anyway.
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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Chronic clusters Reply #3 - Jan 3^rd, 2011 at 3:34pm Hi, Please don't give up hope. At what flow rate did he use his 02? Much higher lpm are used now and provide great relief for many.
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thebbz Ex Member	Re: Chronic clusters Reply #4 - Jan 3^rd, 2011 at 3:44pm Yep 02 therapy has changed to high flow rates...25 lpm or more. When administered properly the results can be surprizing. clusterbusters.com all the best the bb Get out and do something together, fishin, movie or something even a walk.
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Brew

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Re: Chronic clusters
Reply #5 - Jan 3^rd, 2011 at 3:46pm

If you get to the point where you've had it with traditional Big Medicine and Big Pharma, go here:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Get yourself a big cup of coffee or tea, sit down, and plan on spending some time reading. And stop the panic - CH won't kill anyone. It's how man reacts to it that might.

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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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Geordie Lass

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Re: Chronic clusters
Reply #6 - Jan 3^rd, 2011 at 4:11pm

Thank you for your replies.
In 15 years he has tried everything he can. Now he is getting really ill. He has been told that the SUMATRIPTON may be damaging his heart.
Thanks I have just joined Clusterbusters now. I will try anything to help him.
I am 75 and my husband is 81 we'd like to help him but we can't. He has a wife that is very good to him.
He has managed up till now to cope with CH but this illness is dragging him down and his doctor is not much help.
Are there other Cluster sufferers that are having trouble with their hearts while taking Sumatripton.

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Brew

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Re: Chronic clusters
Reply #7 - Jan 3^rd, 2011 at 4:35pm

What I'm trying to tell you is that, in my opinion, it's not the CH that is dragging your son down. It's the drugs. Check this out:

Quote:

Side Effects of Verapamil to Report
There are several serious side effects with verapamil that you should report immediately to your healthcare provider. These include, but are not limited to:

* Chest pain
* An irregular heart rhythm (arrhythmia) or a slow heart rate (bradycardia)
* Heart attacks or strokes
* Significant water retention, especially accompanied by difficulty breathing (signs of congestive heart failure, or CHF)
* Signs of very low blood pressure, such as dizziness, lightheadedness, or fainting
* Hallucinations or other psychotic problems
* Breast enlargement in men (gynecomastia)
* Signs of an allergic reaction, including an unexplained rash, hives, itching, unexplained swelling, wheezing, or difficulty breathing or swallowing.

Common Side Effects
Verapamil has been studied thoroughly in clinical trials, in which the side effects of a group of people taking the drug are documented and then compared to another group not taking the medicine.
As a result, it is possible to see what side effects occur, how often they appear, and how they compare to the group not taking the medicine.

In these studies, the most common verapamil side effects included:

* Constipation -- in up to 7.3 percent of people
* Dizziness -- up to 3.3 percent
* Nausea -- up to 2.7 percent
* Low blood pressure (hypotension) -- up to 2.5 percent
* Headache -- up to 2.2 percent.

When I took it, I found myself constantly tired and felt weak.

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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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Geordie Lass CH.com Newbie Offline I Love CH.com! Posts: 7	Re: Chronic clusters Reply #8 - Jan 3^rd, 2011 at 4:47pm Thank you very much I am sending this to my son. I appreciate your help.
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thebbz Ex Member	Re: Chronic clusters Reply #9 - Jan 4^th, 2011 at 12:49am YOU ROCK Goerdie Lass!!! all the best the bb
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Mosaicwench

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Re: Chronic clusters
Reply #10 - Jan 7^th, 2011 at 6:01pm

I understand your frustration and helplessness as a supporter. My husband is the clusterhead in our family and I've fought this evil beast by his side for much longer than I care to remember. There were times I felt I'd lost my husband to the side-effects of all the meds he took.

You are NEVER alone, and there IS help, but he's gotta have the gumption to seek out what is best for him. The sumatriptans don't seem the right course, based on what you've reported.

Read, read, read and learn all you can. Pass it all along to him, or better yet, get him to sign up here. There are plenty of Brits here that can help with specifics.

We're here anytime you need us, and we weep along with you at the effects of this evil beast on our lives. But we fight, oh boy do we fight, with everything we have.

Chin up mum, you've joined a wonderful family.

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QnHeartMM

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Re: Chronic clusters
Reply #11 - Jan 8^th, 2011 at 9:56am

Also Mum - you mentioned he's tried O2 in the past, but so many people determined O2 didn't work for them, only to find out they weren't getting enough of a flow or their docs were prescribing concentrators instead of the actual tanks. Please read the info we have on the site about proper use of oxygen.

My husband uses O2 at the onset of a hit, and then also drinks an energy drink (quickly). He can usually beat the pain in about 10 minutes.

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Geordie Lass

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Re: Chronic clusters
Reply #12 - Jan 14^th, 2011 at 1:04am

Thanks to all you kind people. It does make you feel you are not alone.
I have sent for some Liquorice Root Tincture that I saw on Clusterbusters so I am hoping this might help him. Anything is worth a try.
Another Christmas has gone down the pan again as he was too ill to enjoy it. The same as many Christmas's.
I have had Amelio Blastoma, don't know if I spelt that right. They removed the tumour by cutting out part of my lower jaw. I only tell you this to say that that is NOTHING to what these people suffer at the hands of these CH
My heart goes out to them and to all of us who watch but can't do much about except be there for them.
Thanks again everyone
GL

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monster

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Re: Chronic clusters
Reply #13 - Jan 15^th, 2011 at 7:01am

i am trying to get off imitrex injections now because i recently have developed heart issue's so i can relate. getting off imitrex can be tough when you first quit prepare for a week or two of rebounds etc. this does go away. then get that o2 right like suggested above ,, the right flow and mask are crucial. i use a demand valve and i like alot.

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"God whispers in your soul and speaks to your mind.
Sometimes when you don't have time to listen, He has to throw a brick at you. It's your choice: Listen to the whisper, or wait for the brick."

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Geordie Lass CH.com Newbie Offline I Love CH.com! Posts: 7	Re: Chronic clusters Reply #14 - Jan 15^th, 2011 at 7:28am Thank you very much for this info. My son certainly would relate to this. I have sent it to him. Marina
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Beth E

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Union City (Erie) PA
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Re: Chronic clusters
Reply #15 - Jul 27^th, 2011 at 3:14pm

Be thankful he will look at this information. My chronic CH husband of almost 16 years (about your son's age, 48) is so down he will not read anything, nor get on any of these sites that I have suggested. He tried O2 years ago also, and because it didn't work, it only made him more irritable, that he is refusing right now to even try again. (the way many on this site have suggested) I have told him that many have increased the flow with a good fitting mask and began using it as soon as the dance begins. This is the toughest thing, to try and help someone to deal with these, when you don't have them yourself. I have watched him and faced the demon with him many years now. I am a wimp and can't even handle a small regular headache! I just pray that one day...they will go away as mysteriously as they came.

Good luck to you all.
Beth

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