Author |
Topic: Please help us........... (Read 637 times) |
|
motye51
New Board Newbie
I love YaBB 1G - SP1!
Posts: 9
|
 |
Please help us...........
« on: May 2nd, 2006, 9:18pm » |
 Quote  Modify
|
I was really hoping we'd not have to return to this website, but I knew that was to much to hope for. We have started a new cycle about 3 weeks ago and we're now starting to peak. Prednisone and Topamax this time, but I need some help. Something is going on with the oxygen? It doesn't seem to be working? We'll be going to the emergency room soon, anyone know what the hell is going on? Why all of a sudden would the oxygen just stop working like this? This has to be one of the worst ones I've seen my husband have and my kids are really worried. We can hear him from upstairs. Can anyone tell me if anything new has happened in the form of pain relief since last year?
Melissa
|
|
 IP Logged |
|
|
|
Sean_C
Guest
|
|
Re: Please help us...........
« Reply #1 on: May 2nd, 2006, 10:00pm » |
Quote Modify
 Remove
|
Nothing works for me Mel when I'm peaking either.
I assume he's using the clustermasx with a regulator pushing out 15 liters plus a minute?
Lots of ice helps me too.
Let us know how he made out.
Sean...............................
|
|
IP Logged |
|
|
|
I_can_dance
New Board Newbie
Gender: 
Posts: 12
|
|
Re: Please help us...........
« Reply #2 on: May 3rd, 2006, 12:30am » |
Quote Modify
|
Melissa,
My husband is also 8 weeks into cycle and finding no relief. Oxygen doesn't abort even with the clustermasx, though for many this is the key. He did the prednisone taper without change and topomax was stopped after 2 pills due to bad reaction. He is now starting on verapamil which caused bad swelling last time, but if it changes the CH that can be tolerated. My husbands tool of choice is intense exercise. He runs hills or uses the stairclimber to exhaustion. In the past this would shorten his attack, but now it is just a way of focusing on a different type of pain, a coping mechanism. And yes, my kids and I hear him also...but we continue to focus on the pain free times and reassure the kids that dad will be okay. He has a tremendous amount of strength and he will perservere until the end. Also read through the Kudzu threads. It appears helpful for quite a few.
Paula
|
|
IP Logged |
|
|
|
Jasmyn
CH.com Alumnus
New Board Hall of Famer
Each day will be a new trick in life's journey
 
Gender:
Posts: 2762
|
|
Re: Please help us...........
« Reply #3 on: May 3rd, 2006, 4:08am » |
Quote Modify
|
Melissa, I'm sorry you and your kids have to witness and cope with this frustration of not being able to do anything that can really help to relieve his pain.
The frustration for many of us here is that during peak cycle, we just have to face the pain as nothing seems to work then.
A good thing that we all have and desperately need during this time, is the support of this site.
Hang in there with your husband, we are here for both of you.
|
|
IP Logged |
Jazz 
Madness is proclaimed by society’s inability to accept its own infallibility
|
|
|
BarbaraD
CH.com Alumnus
New Board Hall of Famer
Hugs to ya
Gender:
Posts: 5164
|
|
Re: Please help us...........
« Reply #4 on: May 3rd, 2006, 7:28am » |
Quote Modify
|
Mel,
Get some black coffee in him at the first sign (before it hits a 5-6) or some Red Bull. Also make sure the O2 is at least 15 liters and with a non-rebreater mask.
Melatonin at night (6-12 mg about 30 minutes before bedtime) has worked to get a lot of us thru the night. Might not work with the first dose, but stick to it for a while and it probably will work to get some much needed rest.
How much topamax is he taking? I've been up to 3-400 mg at night when in high cycle. I take it at night to avoid side effects.
Ice packs for me work well. And I usually keep a headband handy (don't know if it helps, but it seems to).
I use cafergot (ergotomine) to abort the worst attacks. Might try that.
Hugs BD
|
|
IP Logged |
What don't kill ya, Makes ya stonger!
|
|
|
Guiseppi
CH.com Alumnus
New Board Hall of Famer
Gender: 
Posts: 2703
|
|
Re: Please help us...........
« Reply #5 on: May 3rd, 2006, 10:16am » |
Quote Modify
|
I'm in the minority on the board but I use lithium as my preventative. I'm a 46 year old male, I weigh about 190 pounds. I use 1200 mg a day of lithium when I'm on cycle, 300mg, 4X a day. I use the prednisone taper for about the first 10 days as it takes about that long for the lithium to build up in your system. The only side affect is lethargy and you pee a lot! If he hasn't tried it run it past your doctor. It scares some docs cuz it requires some monitoring to get the levels right, but it blocks 80% of my attacks. Oxygen and cafergot squash the majority of my break thrus.
That being said you're a goddess for being a supporter. My wife found this site for me, has always supported me and is my life line.
Guiseppi
|
|
IP Logged |
Why are all sensors, seeking intelligent life, pointed AWAY from earth?
|
|
|
BlueMeanie
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 1178
|
|
Re: Please help us...........
« Reply #6 on: May 3rd, 2006, 9:35pm » |
Quote Modify
|
Hi Melissa,
You sound like a very good supporter and that's great to hear. Sorry your hubby is having a hard time right now. Has he tried Imitrex injections ? It is the ONLY thing that ever works for me. Oxygen only works while I'm huffing. Most of the time, as soon as I take away the mask, the CH returns full force.
Anyway good luck, I hope the cycle ends very quickly. Take care.
|
|
IP Logged |
|
|
|
motye51
New Board Newbie
I love YaBB 1G - SP1!
Posts: 9
|
|
Re: Please help us...........
« Reply #7 on: May 4th, 2006, 12:04am » |
Quote Modify
|
I called his doctor on Tuesday morning, b/c my son found him blacked out in the car in our driveway on Monday evening. We didn't even know he was home. King Kong here keeps trying to go to work, when he tells me he can still feel them all day long? Now I can't trust him to drive? He's on 40mg of prednisone and now up to 2 topamax at night. The oxygen is on 10cc?? I don't know if that's the right lingo? Also, he has these Imitrex nasal shots, I don't think they work myself? What is this injection I keep reading about? He went for an MRI today and will be going for an EEG on Friday. We own a mechanic shop in the town where we live and today was the first day in 8 years he actually missed. When he woke up this morning (after a freakin horrible night) I begged him to stay home. His face was so swollen he looked like he'd been in a boxing match. But luckily, he actually listened to me this time. I hate to watch this b/c there's nothing I can do to make it any better. Last night, which I think was his worst yet, that his head felt swollen all the way around and had that brain freeze feeling seemed to take over his whole head. This one lasted for 5 hours, I gave him 2 Phinagan suppositories and it did nothing. The throwing up actually made him feel better. It was like he was frozen in one position, he couldn't even open his eyes? I think he experienced a 10 last night, God help us if this wasn't and there's a worse one to come! I pray that they will find something soon to take this pain away.
|
|
IP Logged |
|
|
|
GuitarBill
New Board Newbie
Gender:
Posts: 32
|
|
Re: Please help us...........
« Reply #8 on: May 4th, 2006, 12:33am » |
Quote Modify
|
Hi motye51. First off I'm sorry you and your husband as well as your children are going through this hell.
...Good call on the MRI, passing out isn't quite common (although I have to admit after strong attacks I have passed out from exhaustion). The swelling of the face as you described has never happened to me however. Does he physically bang his head with his fists or against the wall? Also, was his pain constant during the 5 hours? Anyone else experience these?
Me personally I have had alot of luck with Verapamil, Kudzu and O2. In my experience, the better the preventative, the less severe the attacks which makes the abortive work a little better. Has he tried Verap? I take the extended release. He can also try Kudzu.
If O2 doesn't work, there are Imitrex and DHE injections which have helped me in the past.
Wish all the best for you and please let us know the MRI results...
|
|
IP Logged |
Pffst! Yeah....define "headache"...
|
|
|
MJ
New Board Hall of Famer
Gender:
Posts: 911
|
|
Re: Please help us...........
« Reply #9 on: May 4th, 2006, 1:31am » |
Quote Modify
|
Moyte Hi.
Some people will swell up like a ballon from prednisone in just a couple days. That "may" be where the swelling comes from. The swelling seems more pronounced at lower doses. Some of us have taken as much as 160-180mg tapers, makes one moody too.
Keep on with the doctors untill your sure its only clusters and nothing else.
Oxygen has never worked for me in any way. In fact it has a tendency to make my hits even more intense. I am in the small minority for this however. Try the clustermasx.
If he wants to go to work dont discourage him. For most of us being occupied and alert has a tendency to make the days better even if we hurt like hell at times.
If he has strictly clusters its a hard battle we fight and he probably just wiped out in the car from exhaustion. Should'nt be an issue driving as long as he knows when its time to pull off the road.
The brain freeze may be topamax, can be ugly stuff for some. Again talk to your doc about it and read the warnings or do a search on line about it. Others know more about this than me.
I am not a doctor but I definately know what a 10 is.
Hang in there we all know where your coming from and if you all have been through this before he will know when its just not right anymore.
|
|
IP Logged |
MJ
|
|
|
superhawk2300
New Board Old Timer
Gender:
Posts: 440
|
|
Re: Please help us...........
« Reply #10 on: May 4th, 2006, 8:05am » |
Quote Modify
|
These posts make me vary sad, and that is OK.
I am glad you guys are being procative and hope you find something soon.
I bought an expresso machine for the caffine trick. Only a few ounces to drink because the caffine only works for me if I get it in the system really fast, so fast that slamming a redbull (8oz) is too slow. My expresso machine makes it in 30 seconds, it is only a couple oz, has all the caffine of a strong cup of coffee, and comes out at a very comfortable tempature.
Hope this helps.
Jamey
|
|
IP Logged |
|
|
|
SteCo
New Board Veteran
I love YaBB 1G - SP1!
Posts: 109
|
|
Re: Please help us...........
« Reply #11 on: May 4th, 2006, 2:31pm » |
Quote Modify
|
on May 4th, 2006, 12:04am, motye51 wrote:. The oxygen is on 10cc??
|
|
Try cranking up the O2. A high flow regulator should go up to 15. If 10 is the max for yours, you have the wrong one.
At the first signs of CH, hit the O2 and the quicker it will work. Higher CH levels are more difficult to abort but it will eventually help for most. For me, with higher CH levels, it hurts just to breathe, force it and it will eventually begin to ease up.
Good luck!
SteCo
|
|
IP Logged |
|
|
|
motye51
New Board Newbie
I love YaBB 1G - SP1!
Posts: 9
|
|
Re: Please help us...........
« Reply #12 on: May 7th, 2006, 1:03am » |
Quote Modify
|
RE: Guitar Bill.....
He says the feeling in his eye seems to go like a roller coaster. High and low, high and low?? I think exhaustion was exactly what it was because where we live it's really hot already and we work in an unairconditoned mechanic shop. He made it home and I think just couldn't move from the car. MRI came out where they saw nothing, and this I don't understand. How the hell can't an MRI tell what's going on when your in a cycle. He tells me he knows it's there, he can feel it all the time, I guess it just the different pain levels. Some are more bearable than others. But if your taking pictures of the brain, how can you not see what's going on with the blood vessels? We went for an EEG on Friday, we'll see what that is on Monday. What is this clustermask I keep hearing people talk about? Someone please let me know.
Thanks to everyone!
|
|
IP Logged |
|
|
|
mynm156
New Board Hall of Famer
hope life isn't a big joke, because I don't get it
Gender:
Posts: 1708
|
|
Re: Please help us...........
« Reply #13 on: May 7th, 2006, 2:09pm » |
Quote Modify
|
Hi!
I would ask about some verapimil, imitrex injections is just another way to recieve the medication it is a amall self injection system that shoots the meds into your muscle. The nasal spray is fine but some people respond better to the injections. Also Zomig sometimes works better than the Imitrex does.
Good Luck and always keep us in mind we love to have new members to our family maybe someday your experence will help someone else!
MYNM156
|
|
IP Logged |
"Half of the modern drugs could well be thrown out of the window, except that the birds might eat them."
|
|
|
I Cant Dance
CH.com Alumnus
New Board Junior
Kicking "Fat Bastard" to the curb!
Gender:
Posts: 62
|
|
Re: Please help us...........
« Reply #14 on: May 8th, 2006, 12:45am » |
Quote Modify
|
Sorry you are struggling so. Nothing works for me, so I can't give suggestions. For clustermasx info, go to:
www.clustermasx.com
Wishing you PFDANs.
|
|
IP Logged |
"I can endure more pain than anyone you've ever met. That's why I can beat anyone I've ever met."
-Steve Prefontaine, "Without Limits"----Yeah Right! "I got yer pain right hiya."
|
|
|
Bob P
New Board Hall of Famer
Shut up Bob!
Gender:
Posts: 3436
|
|
Re: Please help us...........
« Reply #15 on: May 8th, 2006, 7:35am » |
Quote Modify
|
Quote:| The throwing up actually made him feel better. |
|
Years back I would often become nauseous from the cafergot I was taking during an attack. After some time I would vomit and the attack would end within a couple of minutes. It got to where I would do the finger down the throat thing to make myself vomit and end the attack. Some cycles later I decided it was the physical exertion of vomitting that helped so I tried streneous exercise when I felt an attack starting. I'd do squats until my legs burned and I was really huffing and puffing. Then I'd sit down with an ice pack. The attack would go away in about 10 minutes. I aborted over 60 attacks in a row with this technique.
|
|
IP Logged |
Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
|
|
|
I Cant Dance
CH.com Alumnus
New Board Junior
Kicking "Fat Bastard" to the curb!
Gender:
Posts: 62
|
|
Re: Please help us...........
« Reply #16 on: May 8th, 2006, 9:31am » |
Quote Modify
|
Bob,
I exercise during a hit also, but unfortunately it does not abort my hits. It is a coping mechanism for me.
|
|
IP Logged |
"I can endure more pain than anyone you've ever met. That's why I can beat anyone I've ever met."
-Steve Prefontaine, "Without Limits"----Yeah Right! "I got yer pain right hiya."
|
|
|
GuitarBill
New Board Newbie
Gender:
Posts: 32
|
|
Re: Please help us...........
« Reply #17 on: May 9th, 2006, 3:18am » |
Quote Modify
|
on May 7th, 2006, 1:03am, motye51 wrote:RE: Guitar Bill.....
He says the feeling in his eye seems to go like a roller coaster. High and low, high and low?? I think exhaustion was exactly what it was because where we live it's really hot already and we work in an unairconditoned mechanic shop. He made it home and I think just couldn't move from the car. MRI came out where they saw nothing, and this I don't understand. How the hell can't an MRI tell what's going on when your in a cycle. He tells me he knows it's there, he can feel it all the time, I guess it just the different pain levels. Some are more bearable than others. But if your taking pictures of the brain, how can you not see what's going on with the blood vessels? We went for an EEG on Friday, we'll see what that is on Monday. What is this clustermask I keep hearing people talk about? Someone please let me know.
Thanks to everyone! |
|
Has he seen any improvement in the cycle yet? I would definetly recommend Verapamil...as always it may not work for everyone but it saved me. I can't even begin to imagine a vomiting bout with CH, It has made me nauseous before but I was in too much pain to puke. God.
As far as the eye...is the eyelid swollen all the time? My left eye is permanently drooped a little, and what's wierd is my CH switched sides years ago....but my right eyelid doesn't seem to be affected.
I used to use DHE nasal spray, and it worked (not half as good as O2) but it did kill the beast. DHE injections are even faster (as well as Imitrex) my problem was that I was afraid of sticking a needle in me! However, the pain of CH overcame and that became a much lesser fear believe me. Try as many options as possible. Kudzu helped me out too and it was CHEAP! Keep us notified...
|
|
IP Logged |
Pffst! Yeah....define "headache"...
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss