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Topic: Back after 2 years, and so incredibly frustrated (Read 382 times) |
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KristenF77
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Back after 2 years, and so incredibly frustrated
« on: Dec 8th, 2007, 7:33am » |
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Hi Everyone,
I was a member a couple of years ago, and when I went into "remission" I stopped posting. My apologies for not sticking around to support others. But, this morning at 3:30 am, identical to the time of my last attacks I woke up with what I thought was a headache due to the dryness of my bedroom, but it progressed into a CH. Lasted about 20 minutes. I quickly jumped out of bed thinking I would be able to dodge it, but I didn't. This year has sucked so bad for me. My father was diagnosed with cancer, died 2 months ago and I am still incredibly sad. And now, these headaches are the icing on the shit cake I have been living. I dread what tomorrow morning may bring. I am praying it was a fluke, but I don't put much stock into that. Weird thing is, I have been sleeping horribly lately and last night I took a supplement called MELATONEX, and would you believe I got a CH? Could there be a correlation between the two?
Anyway, just wanted to re-introduce myself and get some support. I am so sad that this is back in my life again.
I hope all of you are doing well aside from dealing with this horrible affliction. 
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DennisM1045
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Re: Back after 2 years, and so incredibly frustrat
« Reply #1 on: Dec 8th, 2007, 8:49am » |
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Hi Kristen,
First, let me say how sorry I am about your Father. I lost my own Dad in 2004 to Cancer. I'm also sorry to hear the beast has made a return to your life. From what I understand (not having been here two years ago myself) quite a bit has changed in CH treatment in the last two years. So tell us what you have in your bag of tricks and maybe we can make your abort time quicker.
I've had a lot of success with Melatonin so I don't think that supplement had anything to do with bringing on an attack. But that's just me 
Oxygen works wonders for me and is my main defense. 100% O2 @ 15lpm with a non-rebreather mask and the beast is typically gone in 10-20 minutes. If its a day time hit I add an energy drink to keep him on the run. If that combo fails I fall back to an Imitrex injection. Imi has never let me down.
I hope it was a rogue hit. But if it wasn't, we'll help to get you sorted out. Welcome back. (Stick around this time ).
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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KristenF77
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Re: Back after 2 years, and so incredibly frustrat
« Reply #2 on: Dec 8th, 2007, 8:55am » |
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Thank you so much for the welcome back, and sharing your secrets. As of right now, I suffered in partial silence last night. I did not want to wake up my husband. (No need for both of us to miss out on sleep). Last time this happened I went to my neurologist and was prescribed Imitrex shots, Verapamil, and Oxygen which I could not find ANYWHERE on Long Island. Last time the cycle lasted for about a month. I actually found my old Imitrex pills, and I filled the RX last on January 5th, 2005. So, I guess I was due for this sooner or later. I am so exhausted right now. I was able to sleep from 4 am to 6 am this morning. Now, I feel like I could sleep all day. Unfortuntely, I can't and will not let this ruin my entire day. I doubt I will be able to get a Dr. appt before Monday so I just have to deal with this until then.
I am sorry about your father. Cancer sucks so bad. I miss my pop.
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barry_sword
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Re: Back after 2 years, and so incredibly frustrat
« Reply #3 on: Dec 8th, 2007, 9:01am » |
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Hi Kristen. Welcome back. I am new here since you were on the board last but these folks have helped me deal with the beast so much. Like Dennis said, the o2 is my miracle also and it has stopped my hits in as little as 4 minutes. Yes, my wife Angie times them.
I am very sorry about your Dad and I too have lost mine back in 1988 to cancer. It sure leaves a void in ya.
I pray your hit was a fluke but if not we are here for you.
Barry
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KristenF77
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Re: Back after 2 years, and so incredibly frustrat
« Reply #4 on: Dec 8th, 2007, 9:03am » |
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Thanks Barry. I wish it was a fluke, but what are the chances of that? 
I am very grateful for the 2 years CH free, though.
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DennisM1045
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Re: Back after 2 years, and so incredibly frustrat
« Reply #5 on: Dec 8th, 2007, 9:04am » |
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It sounds like your Dr is taking the right approach. Get back to him and get your perscriptions in order. You should be able to obtain Oxygen from a supplier in your area. There has to be one on Long Island! I'm sure someone will be along to help you with a reference. You could also call your Insurance co.
Imitrex pills won't take effect till the hit is unstoppable. You are much better off with injections. But use as few of them as possible. They'll stop working and cause rebound HAs too. With O2 and energy drinks I got my imi usage down to an average of one shot a week last cycle.
Good luck...
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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KristenF77
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Re: Back after 2 years, and so incredibly frustrat
« Reply #6 on: Dec 8th, 2007, 9:06am » |
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Thank you so much. The advice is very much appreciated.
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wip5150
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Re: Back after 2 years, and so incredibly frustrat
« Reply #7 on: Dec 8th, 2007, 6:13pm » |
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Hello Kristen and welcome back. It always (and I mean ALWAYS) sucks to begin a cycle......knowing what's in store and wondering when the light at the end of the tunnel will finally appear. We've all been there more times than we would care to remember and we're right there with you.
I've been episodic since I was 19 (I'm 38 now) and during my last cycle two years ago I got on Verapamil for the first time and it seemed to work. I'm currently in a cycle and I "think" the Verapamil is working but it's always hard for me to tell if I'm cycling down or the meds are finally kicking in. Just for reference, I take 360mg per day. Also, like others, I have a supply of energy drinks always at the ready - I prefer Rockstar...not for the taste, but because I hope that, in time, I really WILL be Rock star!!
Good luck getting O2. I used to live in Rye, NY (Chicago now) and had a whale of a time getting even Imitrex nasal spray let alone something really worthwhile. But, that's what you get for going to a doctor who has a not-so-secret identity of a pompous ass but I digress.
Like the others have said, hopefully your headache was a hit and run and not the bastard coming for a prolonged visit. Be well and know we are all supporting you.
Bill
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| « Last Edit: Dec 8th, 2007, 6:19pm by wip5150 » |
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justthe2ofus
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Re: Back after 2 years, and so incredibly frustrat
« Reply #8 on: Dec 9th, 2007, 3:43pm » |
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I know exactly how you feel. I just started my recent cycle 2 mths ago, after a 3 yr break. I woke up to one thinking "oh NOOOO not these again" but I just had a gut feeling, knowing the timing was right for the cycle, and sure enough, here I am. I'm keeping my fingers crossed that its winding down though, and I made it, again...year after year, cycle after cycle, we always make it, so don't get discouraged....
I used to post here during my last cycle and quit posting after the cycle went away ( I know I should have hung around, didn't realize how much I had missed)....I plan on sticking around this time. I like to know I am helping someone out atleast with showing support, if anything, during the crappy cycle times. I know I am very fortunate to have a husband who is a supporter who understands completely what I am going through since he has Clusters himself.
I am very sorry to hear about your Dad, mine also has been going through some major health issues this year. The worry adds an extra strain on the headaches, and the headaches cause extra worry. I feel for you hun, and hope things get better. Wishing you PF days/nights (weeks and years for that matter).
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