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Topic: Newby on board (Read 545 times) |
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NancyMcFree
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Ok, I have been reading everything on this site for a few weeks now. Learned lots of good stuff but still have a few questions. I was recently diagnosed with clusters. Never really suffered from any kind of headaches other than sinus in my life and wam, out of the blue I started waking up at night with the most excruciating pain I have ever had in my life. Pretty much the standard stuff ... pain all on one side, nose shuts, pace, rock, cry .... with the exception of the eye watering ... oh no, mine looks like it is bleeding. That adds to the pretty picture I have seen in the mirror in the middle of the night for over a month now. For the first 25 days I never slept more than 3 hours a night ... and found out really quickly that naps were totally out of the question unless I wanted a bonus headache to add to my log for the day. I have been to all the doctors ... dentist, endodontist, eye, GP, neurologist ... had all the tests ... CAT, MRI, MRA. My family doctor did really well by me and diagnosed right away (after a few weeks of thinking it was a sinus infection). I'm really glad I found this site as it helped me through many a sleepless night reading all the stuff I could on this disease. I now have Imitrex, oxygen, and verapamil. Couldn't ask for more drugs ... not that I want them ... I haven't taken 10 aspirin in the last 5 years - so all this medicine is new to me. My questions would be -
1. While for the first 27 days I had consistently one headache a night, and a bonus if I tried to take a nap ... now I am all over the place. In the last two weeks I have had 3 in one day (all while awake), gone 4 days at once with none, then had another one .... why ??? While I never before had a headache in my life .. now on the days I don't have a banger I have a headache all day, or just shades of a real banger starting .. like with the nose and eye starting to ache but never really getting a headache. Is this what you call shadows? And am I still in a cycle if I am getting these ? Half the time I am taking the imitrex before it starts to get bad only because I am afraid of how bad it will get. How do you tell if its gonna stop of if you should do the shot ???
2. While I have the oxygen .. the guy who brought the stuff took off the bag from my oxygen tank and set me up with just a mask ... is this the wrong way to use it ? I got rid of one not so bad headache using the oxygen so far ... but the rest of the time I end up doing a shot of imitrex after the oxygen doesn't work.
3. Is it normal when you get a break and don't have a headache for a few days to feel like someone pulled the plug on the tub and all of your energy drained away ???? After two days of not having a headache it is all I can do to get out of bed I am soooo friggin tired. Perhaps this is just relief washing through my body .... but boy, it would be nice to feel better after getting a good nights sleep !!!!! I feel like a train ran over me when I do sleep good. I have got to get better at this !!! If my headaches aren't coming every day can I assume I am close to the end of my cluster ?????
4. What is the average cycle? Once I get through this one I would like to know how long I can look forward to being PF !!! I did look at some of the charts for how long clusters last and how often they re-occur but they don't really give me a good idea.
Glad I found this site. I feel like at least now I have someone to talk to that understands what is going on in my head !!!!
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Drk^Angel
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Welcome to the board! Sorry that the beast is usin' a dull, rusty cheese grater on your cranium. #1... Sounds like shadows... And I count my cycle from when the symptoms start, to when they end, so I would say you're still in cycle. #2... Non-rebreather masks have a bag, to make sure you can pure 100% O2 with every breath... Without it, you'll get mixed O2 and room air. Anything less than 100% O2 is not as effective. #3... Eyeryone's cycle is different... Some get hit everyday, multiple times... Others get hit once every few days... Some have a mixture. #4... Everyone's cycle is different... Some last for a couple weeks... Some a couple few months... I'm goin' on month 7 myself. Good luck!
PFDAN.................. Drk^Angel
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ChristineL
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Dear Nancy,
Welcome. You will find a tremendous amount of support and info here.
I know how frustrating it can be to not have answers. Unfortunately there are no pat answers and everyone is different. I started out in the 70's with episodic CH's, then moved to Chronic and then went into remission for 14 years. Why - who knows. Now they are back and I have no idea what they will become. I started out about 3 weeks ago with one at night, skipped a couple of days and then another one. Now I am getting 3-4 a day. Keep a diary or log and see if a pattern develops over time. Hopefully the meds will work for you and you can adjust your life to them. Always have them with you and try as best you can to get some rest. Stay away from alcohol when you are in cycle as these can trigger them (or at least in a lot of cases). Yes, they drain you - look at the pain you are going through - how can it not. I try and relax as much as possible and try and schedule my life around how I feel. If I have had a fairly easy headache day I try and catch up on stuff I couldn't do when I felt like crap. Good luck and look to us for any help we can give you.
Chris L
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Opus
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Re: Newby on board
« Reply #3 on: Aug 8th, 2002, 9:18pm » |
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Nancy, Sorry to tell you that a break in ch's doesn't mean it's over soon. 4 weeks ago my ch's stopped for 4 days. I think ithe stress of no sleep did it. Then they were back. Now I have constant shadows all day with 1 ch a week. Now they are 1 per 5 days. It's hard to judge when to take Imitrex. Last week I had a shadow that quickley when to 10 and I hit it too late and was stuck with a 5 for 5 hours. hope this helps . PFDAN to all.
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Zed-Zed-nine plural-Zed alpha,
There is no place like home.
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Jim R
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Re: Newby on board
« Reply #4 on: Aug 8th, 2002, 9:20pm » |
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Hi Nancy,
So sorry you're here but glad at the same time.
#1 Yup, naps do ti to me too. Avoid them like the plague. If you;re like me, they'll bring one on every time. No rhyme or reason to the beast...HE strikes when he wants...
Slight headaches and eye aches thrat aches, etc. are shadown - the feeling it could crescendo at any time....yep, that are the shadows
#2 See the previous answers...non-rebreather means that - no carbon dioxide and no room air - 100% O2. BTW, O2 isn;t doing it for me now - 25 years as a Clusterhead and now not working.
#3 Oooh, got one coming on myself, so I'll try to finish this up and get on teh O2 again...Yes, it's normal to get a break, espcially at teh beginning of your cycle. They usually become more predictable when you're smack dab in the middle of it.
#4 Anyone's guess. Mine are long cycles - 4-6 months and they started early this year, so hopefully ??? they'll end early - hope so - I haev a busy fall and winter planned.
Sorry you have these Nancy and best wishes for PFDANs.
Jim R
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"Hammer of the Gods..." (pounding on my head...) and isn't Bowie great?!
Proud member of OUCH
Episodic Clusterhead since 1978
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