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clareep
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new to chronic
« on: Oct 29th, 2005, 12:44am » |
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Hi i am writing this for my husband as he is at wits end. He had his first cluster 7 years ago, and we had forgotten about it untill August this year. He became ill with pneumonia, then a sinus infection, then the cluster migranes came back. It took a couple a weeks to diagnose as we had forgotten or wiped it from our minds. So far this time he has been on Prednisone for over a month which lessened the intencity, then he tried verapmil up to 480mg. The neurologist then took him off that and put him on Deseril which did nothing. He then got oxygen but we have the wrong mask. He is now back on Prednisone at 75mg. He has been diagnosed as chronic sufferer. Does this mean that he will have them forever with no relief. He has shadows all day then hits mainly at night. How do the chronic suffers live knowing that the pain is always there, how do you plan events and outings. It is like our life as a family has stopped. help
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Heather75
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Re: new to chronic
« Reply #1 on: Oct 29th, 2005, 1:25am » |
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Hello clareep,
I'm so sorry you are here, but at least you found a place with tons of information about cluster headaches and a bunch of people to help too.
Please get the right mask for him. I don't think getting a mask should be too difficult, usually getting the Oxygen itself is. O2 has been one the most beneficial tools with no side effects for helping cluster headaches. When it is done right, it brings a lot of people relief.
There are plenty of chronic sufferers around here that have been able to control the headaches with different medications/treatments. Some can even become episodic or they will disappear completely. Everyone is different with these things. We all have to hope for the best and keep trying.
I too am a chronic cluster headache supporter. Finding the right medication and what works for your husband is the key to taking your lifestyle back.
Hopefully someone with more medical knowledge will be able to contribute soon.
Hang in there.
Heather
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zanychef
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i'm busting with a masx cant really go wrong can i
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Re: new to chronic
« Reply #2 on: Oct 29th, 2005, 2:52am » |
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hi clare
o2 is a godsend when used properly look for the post by clusterchuck on tips how to use it in medications
i too am chronic we have our good days and our bad days (weeks,months) planning stuff is fairly hard the best advice is live normally(otherwise the 'beast' wins),always take o2 with you in the car,always have trex when you go out 
if you pla a longer trip away the link on oxygen to the left has some useful tips for travel i.e where to get more o2 from etc
the diagnosis of chhronic might be premature as some cycles can last over 6 months so heres hoping that the neuro was wrong!!
mainly i find the attitude of NEVER EVER GIVE IN helps
ian
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plenty of time to sleep now me headaches aint too bad
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clareep
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Re: new to chronic
« Reply #3 on: Oct 29th, 2005, 4:29am » |
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Thanks for the info, what is Trex? 
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BobG
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Re: new to chronic
« Reply #4 on: Oct 29th, 2005, 4:40am » |
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on Oct 29th, 2005, 12:44am, clareep wrote:He had his first cluster 7 years ago, and we had forgotten about it untill August this year. He has been diagnosed as chronic sufferer. This may sound as if I'm nit-picking and maybe I am but he is not chronic. The term chronic refers to clusters for one year without a two week break during that time. Chronic does not mean the number of attacks or the amount of pain.
Does this mean that he will have them forever with no relief. No. They could go on for a long time or they could stop this week. But, there's no way to tell.
He has shadows all day then hits mainly at night. Do you mean he is in pain all the time? Or do you mean he has shadows many times a day? |
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Welcome to the board clareep. Sorry to hear your husband is in pain. There is a lot of information at this site. If you start now, no stopping for sleep, meals or potty breaks, you can probably read it all in about 23 days.
Good luck. Let us know how the hubby and you are doing.
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Stay stressed. Never relax. Never sleep. Ever.
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AussieBrian
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Re: new to chronic
« Reply #5 on: Oct 29th, 2005, 4:42am » |
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G'day Clare, and welcome to the nut hut. "Trex" is known here as Immegran and in injectable form can have many good effects. As for the O2 mask you should be able to get one from the chemist or ER.
Our friend Barry in Karatha has heaps of good info on O2 but I think he's out hugging trees just now. I'll see if I can find my copy.
Won't be long, but I'm not the world's fastest typist,
Brian Up North.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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BobG
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Re: new to chronic
« Reply #6 on: Oct 29th, 2005, 4:49am » |
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Ooopps, forgot to mention oxygen.
Go to the Medications, Treatments, Therapies section of this site and scroll down to the title Clustermasx Review started by rextangle. Then scroll down to Mr. Happy’s message and be sure to click on the links (in blueish-green color).
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AussieBrian
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--------------------------------Re: new to chronic
« Reply #7 on: Oct 29th, 2005, 4:54am » |
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G'day again. All Bobs comments are relevant and we'll get to them in time. During the meanwhile, here's Barry's post.
------------------------------------------------------------------------ --------
I see people posting that they have trouble getting scripts or prescriptions for oxygen so I did a little look around to see what is available.
I sense that this problem may come from doctors not knowing how to get hold of oxygen set ups outside of their own surgery environment.
I have inserted some pics in this post but they may not present on the site due to my inability to post pics but if you go to the link provided you can type in the part #s and have a look.
https://pgw100.portal.gases.boc.com/scripts/wgate/zcpwp_b2c/!?~login=boc comau
Here in Western Australia all that is needed to get the equipment is to set up an account with BOC gasses, easily done by going to one of their outlets and simply starting one up.
You can either buy the gear yourself or for the short term if you are episodic you can hire for a monthly fee a regulator & flow meter that fits the small C size bottle, you will have to pay for the oxygen and an annual rent on the cylinder you then only need the non re-breather mask that you may be able to con from ER if you know someone there.
The beauty of the rental gear is that you don’t have the initial outlay cost and when you go out of cycle you just return the gear, when you return the bottle you should get a credit on the annual rental if you have only had it for a short time.
Here’s the part # for the portable hire gear.
Order Code 401KITC Portable regulator & flow meter to fit C size bottle.
My set up is a normal welders oxygen regulator attached to a D size medical oxygen bottle, good for home and reasonably portable with this flow meter attached.
You need to get a fitting with a barbed end to attach to the bottom of the flow meter to which you attach the tube of the non rebreather mask, I got my mask from the ER last time I was hit, they are normaly throw away after use as the wont use them on anyone else for health reasons.
Flow meter part # 105215 0 to 15 Litres / Min
If anyone needs more info please feel free to PM or Email me.
Hope this helps out.
Kind Regards
Barry
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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Jasmyn
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Re: new to chronic
« Reply #8 on: Oct 29th, 2005, 3:34pm » |
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Welcome clareep.
Sorry for the circumstances but hope lays here.
Best site, people and support you'll get to cope with this.
Jas
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Jazz 
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clareep
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Re: new to chronic
« Reply #9 on: Oct 29th, 2005, 8:43pm » |
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Thanks for all the support Rod and I really appreciate it. It is great to get advice from people who know what we are going through. We are sick of hearing from the "experts" that all know someone who has had bad headaches that was fixed by there chripractor/natropath/medicine man.
RE Bobg comment I felt the neuro was very quick to diagnose chronic, as that word is a very depressing concept to get your head around. He does have shadows all day, he has only been pf twice for about half a day on the first day he took pred. Like all Aussies my man loves a beer, which of course are a trigger, so he doesn't know which is worse the ch or no beer.
Bye and thanks again we feel great being conected on this site.
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Barry_T_Coles
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Re: new to chronic
« Reply #10 on: Oct 30th, 2005, 9:43pm » |
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Hi Clare & welcome.
Here's an update to my original post our friend Mr Happy has it on his website and it has pics of the regulators mask etc, makes it a bit esier when looking for the gear you need.
http://mushys.com/kiwi/
Kind Regards
Barry
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Kate in Oz
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Re: new to chronic
« Reply #11 on: Nov 3rd, 2005, 7:55am » |
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Hi Clareep,
I sent you a PM a couple of days ago and see it's still sitting there unopened. I haven't seen you about so just thought I'd post here. Check your PM's - top right hand corner.
Hope the advice that you've found here was good and that you're man is getting some relief,
Kate
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