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FramCire
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Annoyed rant warning!
« on: Feb 11th, 2006, 10:18pm » |
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I am so darn sick of this cycle. I am having the worst HA I have had in weeks just when I thought it was going to end. I am having a medicine issue because of my insurance company and so I am just plain frustrated.
Anyway, I am hardly bad off because i have a wonderful wife and a very good medical team that cares for me, but I am very annoyed right now and posting this just makes me feel a bit better.
OK...... it is an hour or so after writing the first part and my HA is still raging but I found out I missed my morning 240mg of Verapomil. If this is what happens when you miss a dose, PLEASE NEVER MISS A DOSE!!!!!!! EVER!
Well, now I am just an idiot. Too bad I've been off of Topamax for weeks now, I can't blame it on that!
Sorry to waste board space.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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LeLimey
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Re: Annoyed rant warning!
« Reply #1 on: Feb 12th, 2006, 6:59am » |
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How are you feeling now hon? You rant whenever you want! It's better to get it out than to keep it in. Are you waiting on meds or something? Is there anything anyone here can do to help? We have alot of insurance experts on hand for instance.. We've got your back okay?
Helen 
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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Richr8
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Hope you are feeling..
« Reply #2 on: Feb 12th, 2006, 9:28am » |
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...better by now. I've missed Verap doses before and never had that happen. However, the insurance company issue is ongoing for me. Of only I had the power to give that SOB on the other end of the phone a taste for just thirty seconds, problem solved. Thank God I am episodic. I keep my meds up between cycles just to avoid "administrative" shortages. I just don't have the strenght to battle with these folks in cycle.
BTW-Hang in there, and rant away anytime. Only sorry I wasn't here when you needed.
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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Dragnlance
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Re: Annoyed rant warning!
« Reply #3 on: Feb 12th, 2006, 11:56am » |
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It is not a waste of board space! Part of our problem with the monster is that we have so few people to rant to.
Feel free to rant!
Dragn
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FramCire
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Re: Annoyed rant warning!
« Reply #4 on: Feb 12th, 2006, 3:09pm » |
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I am better today. Thank you all (yet again) for helping me get through yesterday. I am doing better today and I really appreciate having a place to vent. My wife is wonderful but she can only take so much on her shoulders and we have 2 small kids. Last night she was trying to rub my neck to relax me while taking care of the kids and it was too much. The O2 didn't work and she hates seeing me in pain. Anyway, I am better today and I again thank you all. You are truly a gift from God in my life.
WARNING!!! LONG WINDED INSURANCE STORY TO FOLLOW!!!!
As for the insurance problem, my new doctor perscribed Mygranol (nasal spray) and the insurance company said I had to wait 30 days from refilling my Maxalt in order to get the Mygranol. Funny because 1 month of Maxalt is only 6 doses which as we all know wont last more than 3-6days unless I don't use it. My doctor spent 2 days trying to tell them that they have told me to stop using the Maxalt and they tried to get them to cover the Mygranol.
Finally, after another 2 days of me fighting with them, the 100th person (it felt like) we spoke to found a way to get it covered but they said I had to pay for a 3 month supply ($120 copay) and order it by mail order through them. 2 weeks later they called me to confirm my shiping address. 2 weeks later, I hadn't received it and I called them. They appologized and told me I could get it within 4 days (that is a rush with next day air to them).
Anyway, I should now be able to get samples (my doctor was out when I visited him but he should have them now) so I am going to try and get the samples before I spend $120 to see if it works.
The great thing is that my insurance is through my wife's work so I have no leverage to complain to them about this. I don't have any insurance options at this point but this place.
I have been told by my wife and mother that I am too passive of a person and I should have made more noice to get this stuff quicker, but I started on 9mg of melatonin 2 weeks or so ago and I have had MUCH BETTER days and nights thanks to it so I wasn't worried about getting this stuff right away.
I guess I should just get the Mygranol for the future and hope it goes to waste. It has been suggested that I try something else instaed (thanks E-Double, AGAIN) and I might do that instaed of trying the Mygranol for now.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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suziq
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Re: Annoyed rant warning!
« Reply #5 on: Feb 13th, 2006, 10:39am » |
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Hi, FramCire. I was prescribed Migranal nasal spray. I received a box of about 20 little 4mg spray bottles and only used one. It did not relieve my HA's, BUT I would be glad to send you the rest! It's a darn shame they didn't sell them one at a time, like flonase, but I hated to throw them away. I'm not a dealer or anything - they are still sealed. Please let me know. I don't know if we can do this, though, but I would be glad to help a fellow CH'er. It's not a "controlled substance."
Sorry to hear about your pain, I'm in cycle too and trying to find a way out! We are all here for each other and been to hell and back! Hang in there!
Wishing us all PFDAN's!
Suziq
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jon019
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Re: Annoyed rant warning!
« Reply #6 on: Feb 13th, 2006, 11:05am » |
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Hi Suziq,
You only tried the migranal once? Never tried myself but believe you gotta give new meds a decent shot. Yes, I absolutely understand the desperate desire for immediate relief (been THERE). But many meds take a while to build up in your system and/or affect whatever they are going to effect.
I realize migranal is an abortive so is more likely to demonstrate benefit or no pretty quick. Still think you should give it a few more shots.
Regards
Jon
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suziq
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Re: Annoyed rant warning!
« Reply #7 on: Feb 13th, 2006, 3:47pm » |
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Hey, Jon. I think you misread my post. I said I used one bottle - I got several squirts out of it and each time - no help.
Suziq
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FramCire
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Re: Annoyed rant warning!
« Reply #8 on: Feb 13th, 2006, 3:51pm » |
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suziq: I was under the impresion that Mygranol was suppossed to be 1 squirt in each nostril then repeated after 15 minutes and that each one was only 1 dose.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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suziq
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Re: Annoyed rant warning!
« Reply #9 on: Feb 13th, 2006, 3:59pm » |
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I gotta couple of squirts out of mine - used it only in the left nostril (left-sided pain.)
Suziq
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jon019
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Re: Annoyed rant warning!
« Reply #10 on: Feb 13th, 2006, 5:39pm » |
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Hi Suziq,
Sorry about my lack of knowledge about Migranal. I have Zomig nasal spray which is 5 mg per spray dose.
I assumed 1 4mg bottle was one use. That said, and I mean no offense, one bottle seems like a very small trial.
Many times (02, zomig, imitrex et al) will have minimal or no effect if used past a certain time in the hit. That time is different for each, and only you will know by experimenting.
We have so relatively few weapons in this fight that it seems worth it me to give each one a full chance.
And don't forget, that what didn't work this cycle may work the next (or, sigh, vice versa).
Regards
Jon
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FramCire
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Re: Annoyed rant warning!
« Reply #11 on: Feb 13th, 2006, 8:51pm » |
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on Feb 13th, 2006, 3:59pm, suziq wrote:I gotta couple of squirts out of mine - used it only in the left nostril (left-sided pain.)
Suziq |
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Suziq: You were using it wrong, unless the is different than the current Mygronol nasal spray. I have the directions right here:
1. Open vial
2. Insert cap, blah blah blah
3. Prime pump 4 times and spray once in each nostril,,,,,,, Wait 15 minutes and spray again in each nostril.
. Do not open vial until ready for use - Medication may not be eefective if not used within 8 hours of opening.
. After completing a full dose (4 sprays) you must carefully dispose of your unused medication, nasal spray pump, and vial. Never reuse your Mygranol nasal sprayer.
If you don't have a good treatment right now, you might want to try this way of taking it. I would be happy to scan in this sheet and email it to you, if you want to see it. You may not have got any good effect from it because you weren't taking a full dose.
My doctor is a headache specialist, so he does treat CH patients and this was the dosing he gave me for my Has (though they are only on the right side)
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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BarbaraD
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Re: Annoyed rant warning!
« Reply #12 on: Feb 14th, 2006, 7:55am » |
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Suziq,
That's the way I used it too (the way Framcire said). It worked fairly well (for a while), but of course blah blah blah.... (nothing works all the time or every time).
Give it a chance using it in both nostrils. It's worth a try.
Hugs BD
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What don't kill ya, Makes ya stonger!
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vig
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Re: Annoyed rant warning!
« Reply #13 on: Feb 14th, 2006, 8:29pm » |
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on Feb 11th, 2006, 10:18pm, FramCire wrote:
Sorry to waste board space. |
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not a waste, rant away!
you're in good company
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never, Never, NEVER quit. -Winston Churchill
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FramCire
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Re: Annoyed rant warning!
« Reply #14 on: Feb 14th, 2006, 11:32pm » |
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To continue my rant, I have pickedup Strep throat and now I get to experience 2 different headaches at the same time. For whatever reason I have had a worse than average day with my cluster HAs as well as the strep headaches. Since my throat is already tender, no O2 for me. Triptans make me jittery, and my Dr doesn't have Mygranol samples..... so, I dont have a good abortive so I hope I can sleep through the night. This is the worst day I have had since I started on melatonin, so I am praying the night isn't worse too.
Anyway, the symptoms from strep SHOULD go away soon, and then I can just enjoy this cycle with only 1 type of HA.
Anyway, thanks for listening to me rant. I feel better just typing this and knowing that there are people who understand without me explaining it for 10 minutes (or printing out the letter and hoping they read it).
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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JohnM
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Re: Annoyed rant warning!
« Reply #15 on: Feb 15th, 2006, 12:50pm » |
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Hi Framcire - vent away! Hope your are feeling better by now and have meds that work.
Insurance sucks, I know how you feel. Years ago I had big issues with getting enough Imigran injections to get me through a cycle. They would only pay for and let me have 2 shots a month - how useless is that? I took to accumulating them during PF months ready for the next cycle.
I was retrenched a few years ago and since then have covered my day to day medical expenses from my own pocket and only have a "Hospital Plan" insurance now. A CH cycle can get pretty expensive!
The first time I was given 2 Imigran Injections for "emergency use only" by my Neuro back in about 1995 he said only use them if you have somthing like getting struck during a business meeting. I was shit scared to use them and continued to tough-out even the worst hits! I played out the whole injection process over and over. Then one day I was so bad in a meeting I had to rush out and vomited (in the toilet thankfully)and was totally unable to function. I had the kit with me and did my first injection. 10 minutes later I was right as rain and could not believe the rapid relief after 30 odd years of no help whatsoever.
This was a case of it "working right first time" for me  I gave lots of other meds including Migranol, Maxalt. Imigran pills and nasal sprays a good run for the money after this experience but none of them even came close to working after at least 6 attempts at each med.
Jon - I think if an abort is going to work for you at all it will work the first time you use it providing you follow the instructions to the letter. If not then maybe give it a couple more goes and then move on like Suziq did.
John
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| « Last Edit: Feb 15th, 2006, 12:51pm by JohnM » |
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FramCire
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Re: Annoyed rant warning!
« Reply #16 on: Feb 15th, 2006, 1:38pm » |
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Thanks. I woke up with the chills and my dual HA BUT the rest of the day has been better. I don't know if adding the anti-biotic has hurt the effects of melatonin or verapomil, but my HAs are worse (but I can tolerate them, when I don['t have both types at once).
I am going to bite the bullet and pay the $120 bucks to get the mygranol. No more nights without a secondary (to O2) abortive.
Thanks again everyone.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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sandie99
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Re: Annoyed rant warning!
« Reply #17 on: Feb 16th, 2006, 4:21pm » |
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I wish you PF days...
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)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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