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pops36
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Just Diagnosed
« on: Mar 8th, 2006, 1:11am » |
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Hi, I have just been diagnosed, very quickly apparently after reading some of your messages, and want to know, does anyone else have numbness in the side which the headache is happening? Mine is a lefty and the left side of my face is numb. I am sitting here at ten past six in the morning having been up all night, again! I am currently on the seventh day of this hell. This site is a godsend, it's unfortunate but great to have support.
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BobG
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Re: Just Diagnosed
« Reply #1 on: Mar 8th, 2006, 1:19am » |
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I’ve never had the numbness so can’t help you with that.
Scroll through the Medications, Treatments, Therapies section. There are suggestions there to help you get through the night.
Welcome to the board pops. You have a lot of reading to do. Better get started now. The test is at noon.
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Stay stressed. Never relax. Never sleep. Ever.
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pops36
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Re: Just Diagnosed
« Reply #4 on: Mar 8th, 2006, 12:22pm » |
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Thanks for help so far, I have checked the info and found that the numbness I am having is also part of it so eased my mind a little on that front. (Thanks Bob, found it where you said it would be) The hospital tried oxygen when this first started and unfortunately I seem to be one that it is not effective for. Spoke to doc today who has changed my medication again so with a bit of luck this one will be more effective. Anything to get some sleep!
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MJ
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Re: Just Diagnosed
« Reply #5 on: Mar 8th, 2006, 8:58pm » |
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Welcome Pops
How'd you do on the test. If you need a retake many here are in possesion of the cheat sheets.
While being hit hard with CH I dont get the numbness but I do get it with silent atacks without pain.
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MJ
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Jasmyn
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Re: Just Diagnosed
« Reply #6 on: Mar 9th, 2006, 12:56am » |
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Welcome Pops.
Hang in there and hope you get some z's.
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Jazz 
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sandie99
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Re: Just Diagnosed
« Reply #7 on: Mar 9th, 2006, 3:06am » |
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Warm welcome, Pops! 
I'm so sorry that you're hurting. 
You'll find lots of info & support right here, so I'm glad that you've found us. That numbness you mentioned is familiar to me, too. My hits usually happen on the left side as well.
I wish you PF time as soon as possible,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
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Gator
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Re: Just Diagnosed
« Reply #8 on: Mar 9th, 2006, 4:18am » |
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Just curious about when the hospital tried oxygen on you. Did they use a cannula or a mask - if a mask, was it one with a bag on it? What flow rate did they use? Standard cluster O2 therapy is 7 - 10 liters per minute, but research has determined that many for whom oxygen did not work at 7 - 10lpm were able to abort quite well at up to 15 lpm.
Here's an article by Dr. Todd Rozen, one of the leading ch docs in the country, justifying high flow rates in cluster headache.
http://www.chhelp.org/mhni.html
O2 works best for me at 15lpm via a non-rebreathing mask (tape any "safety vents" shut and cut off the strap) for up to 20 minutes. Gotta get me one of those clustermasx and see how much faster it would work for me.
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pops36
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Re: Just Diagnosed
« Reply #9 on: Mar 9th, 2006, 4:38am » |
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Hi Gator, they used the oxygen on Saturday night, first attack was last Tuesday. It was a mask with a bag on and as far as I am aware it was between 7-10. I am still very new to all of this so did not know any of the questions to ask but thanks to you all I am much better informed and now have a list for next time I see my doc. Thankfully money is not an issue here thanks to our health service we do not have to pay for medical treatment, only for prescriptions which cost £6.50 per med no matter how many they prescribe. (Knew our government would come in useful at some point!) This makes it easier as they can keep trying different medication without the cost being too damaging. He now has me on propanolol and although I am not sure if it is working yet, I did get some sleep last night. Yay!!
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Richr8
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Re: Just Diagnosed
« Reply #10 on: Mar 9th, 2006, 5:49pm » |
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on Mar 8th, 2006, 12:22pm, pops36 wrote:| Anything to get some sleep! |
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Several folks here, including myself on a pred taper, manage to get some sleep by using 6-9mg of Melatonin. Worth a shot.
wisihing you PFDAN,
Rich
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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outofcommission
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Re: Just Diagnosed
« Reply #11 on: Mar 12th, 2006, 2:09am » |
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hey pops
i just found this site about 2 weeks ago and became a member. i have found this sight to be very helpful and well maintaned. i have had chs off and on since i was 12 and i am almost 30 now. for 5 years i have been in remmision. i have tried a few persciption drugs, asprin and ibuprophin. the only advice is try diffrent things in moderation. i remember one time coffee was my fix. i drank coffee on the way to work and i was good for half a day. then i carried a thermas. pretty soon i was dinking gallons of this stuff. one time i was working a job about 80 miles from my house. i probably drank 8 cups in 5 hours. 6 hours into the night i got slammed. i sat in the parking lot for 2 hours and 20 minutes at a truckstop and had several stops on the home in the dark. after all that i only got 6 hours pay. man i was pissed. anyway, whatever you try, don't go nuts with it out of despiration. don't blow your nose really hard. i have also found that emergency room visits don't help much. just remember to keep it cool. you'll get this ok.
can't say i have ever felt the numbness.
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| « Last Edit: Mar 12th, 2006, 2:19am by outofcommission » |
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rapunzel
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Re: Just Diagnosed
« Reply #12 on: Mar 12th, 2006, 2:38pm » |
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Hi Pops!
I get the numbness- lets see, it started after some really bad episodes back to back night after night. Right after the very worst one I had, I had facial/leftsided numbness all day long. And Drool. Talk about embarrassing! I can drool like a baby from my left side of my mouth when experiencing numbness. I refuse to let it scare me.
Today i am experiencing left sided weakness- it is more aggrivating than anything else. Takes TWO tries to grab the creamer for my coffee/espresso/Red Bull/etc instead of just one. Stumbled getting out of my van today because my left leg is kinda weird- weaker than the right.
I also noticed that for the past four days or so, I have stumbled over everything, tripped over invisible "airblocks", just enough to generate a laugh out of whomever may see me.
Last night I had an episode before I went to bed- I get hit AFTER I go to bed for the night. This one was before, and it was not as bad as usual- I called it a baby one, my husband was right next to me- trying to comfort me. I called it a baby, a preview- letting me know what was coming. And it did. I had a really really bad night with three episodes (8-10kip) between 1 am and 6 am. What I have discovered is that the weakness and numbness only come on after the horrible of all horrible attacks. If I have single episodes during the night I am not numb or weak the next day. Perhaps it is brought on like when people work out too hard, the next day they are sore. Attacks put us all through pure hell- so I am certain that the tense muscles have to retaliate somehow.
Good luck, I hope you find relief soon-
Kim
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Gator
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Re: Just Diagnosed
« Reply #13 on: Mar 12th, 2006, 5:19pm » |
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on Mar 12th, 2006, 2:38pm, rapunzel wrote:Hi Pops!
I get the numbness- lets see, it started after some really bad episodes back to back night after night. Right after the very worst one I had, I had facial/leftsided numbness all day long. And Drool. Talk about embarrassing! I can drool like a baby from my left side of my mouth when experiencing numbness. I refuse to let it scare me.
Today i am experiencing left sided weakness- it is more aggrivating than anything else. Takes TWO tries to grab the creamer for my coffee/espresso/Red Bull/etc instead of just one. Stumbled getting out of my van today because my left leg is kinda weird- weaker than the right.
I also noticed that for the past four days or so, I have stumbled over everything, tripped over invisible "airblocks", just enough to generate a laugh out of whomever may see me.
Last night I had an episode before I went to bed- I get hit AFTER I go to bed for the night. This one was before, and it was not as bad as usual- I called it a baby one, my husband was right next to me- trying to comfort me. I called it a baby, a preview- letting me know what was coming. And it did. I had a really really bad night with three episodes (8-10kip) between 1 am and 6 am. What I have discovered is that the weakness and numbness only come on after the horrible of all horrible attacks. If I have single episodes during the night I am not numb or weak the next day. Perhaps it is brought on like when people work out too hard, the next day they are sore. Attacks put us all through pure hell- so I am certain that the tense muscles have to retaliate somehow.
Good luck, I hope you find relief soon-
Kim |
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Kim, you need to talk to someone about these extra symptoms ASAP. I'm certainly no expert and I could be reading it wrong, but it sounds like you might be having Transient Ischemic Attacks or mini strokes along with your cluster bouts.
Check out this website:
http://www.ninds.nih.gov/disorders/tia/tia.htm
Quote:What is Transient Ischemic Attack?
A transient ischemic attack (TIA) is a transient stroke that lasts only a few minutes. It occurs when the blood supply to part of the brain is briefly interrupted. TIA symptoms, which usually occur suddenly, are similar to those of stroke but do not last as long. Most symptoms of a TIA disappear within an hour, although they may persist for up to 24 hours. Symptoms can include: numbness or weakness in the face, arm, or leg, especially on one side of the body; confusion or difficulty in talking or understanding speech; trouble seeing in one or both eyes; and difficulty with walking, dizziness, or loss of balance and coordination. |
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You got me worried here. Keep us posted.
Mike
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| « Last Edit: Mar 12th, 2006, 5:26pm by Gator » |
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ABarham
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Re: Just Diagnosed
« Reply #14 on: Mar 13th, 2006, 11:49am » |
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Hey - Welcome Pops
I just found this site a few weeks ago. I am a supporter of my son. I can't feel his pain (or anyone's) but I see what it does. This site has been so wonderful for us. You will find a great "family" here, lots of info and help.
Nice to meet ya.
PFDAN
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Louise
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Rick_K
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Re: Just Diagnosed
« Reply #15 on: Mar 13th, 2006, 11:27pm » |
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Welcome Pops...
Don't give up on the O2, for me it works 8 out of 10 times. Try to catch the bastard as soon as you can and sometimes I need to go to 15L but for the most part 10L works. It could take 10-15 min. to work I don't go anywhere without it...it needs to be used properly, read all about it.
To get some rest try laying on the sofa as upright as you can, helps me get some sleep, and keep the O2 close. That way when the bastard does bite the O2 is right there to bite back.
We all feel you pain...take care
Rick
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BMoneeTheMoneeMan
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Re: Just Diagnosed
« Reply #16 on: Mar 18th, 2006, 12:22am » |
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Welcome pops.
Read up. relief is probably somewhere on this site.
with regard to O2, I need it at least at 12 litres, I start at 15 and work down when i calm down. I dont think 7 or 8 litres a minute with a reservoir bag / non-rebreather mask would be enough air even if you didnt have a clusterheadache.
Hope you get relief soon, and in turn get sleep.
BMonee
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Bostongirl
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Re: Just Diagnosed
« Reply #17 on: Mar 18th, 2006, 10:17pm » |
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How bad is the numbness? I get a little weak and tingley at times. So I can't say that I don't get it. This whole thing is hard for me to explain. but CT and MRI show no damage.
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