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Hello! It's all starting to make sense now! (Read 1111 times)
JessintheGarden
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Hello! It's all starting to make sense now!
Jul 10th, 2011 at 3:35pm
 
I'm so glad to have found you all. I truly feel as though I have finally come home! I'm a 32 yr old Earth lovin' mamma of 3 young boys, wife to an Awesome husband and live just outside Winston Salem N.C.. Until a few weeks ago I have been unknowingly battling this beast for over 20 years now. I had a few people suggest Ch before (never a single doc though) but the whole mildness of the word "headache" put me off, because surely a migraine is the worst you could get right? I just happened to stumble across the symptom description recently and had the biggest aha moment of my life and found you all, and now... well it's a new beginning. oh, guess i gotta start a new one... I write a lot. history next...
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Guiseppi
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Re: Hello! It's all starting to make sense now!
Reply #1 - Jul 10th, 2011 at 5:03pm
 
Welcome to the board! Start reading like crazy, if you have the ability, make an appointment to see a headache specialist neurologist. No guarantee of success but a higher percentage of getting someone who recognizes CH, and is more up to date with its current treatments.

Read the oxygen info tab on the left, let me know if you can't see it on your browser...should be a bunch of info tabs on the left......oxygen should be your first line abortive. I can abort in about 6 minutes, just be huffing 02. But it must be used correctly or it will not work so take a few and read the whole link.

For now try chugging energy drinks when an attack starts, red bull, monster, any containing the combo of caffiene and taurine...many can abort or at least really reduce a hit that way. If you're not already doing so, avoid alcohol while on cycle, a common trigger for most CH'ers.

So glad you found us, let the education begin!

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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JessintheGarden
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Re: Hello! It's all starting to make sense now!
Reply #2 - Jul 10th, 2011 at 6:40pm
 
I started having headaches around 10 or so but it didn't get so bad untill my teens, especially when I started birth control. I was diagnosed with migraines around this time. I went a further 13 yrs or so before a doc finally suggested the bc was a trigger. Even 2% progesterone in the new IUD did it big time! Got the old copper one now. Needless to say I was chronic throughout that time. The funny thing is that I got into the psychedelics and other drugs in my teens and 20's and had a lot of on off pf time. ha ha.
Triptans and a few natural remedies were my only lines of defense otherwise. I was never asked specific q's about my symptoms, or sent to a specialist. also very rarely had insurance. And absolutely no support from nasty ex who would get mad cause the babies were crying and I couldn't take care of them. Those were the days where I would be pacing and nursing a baby with one arm and holding an ice pack to my head with the other until the pain was so bad I would end up in the bathroom vomiting and crying with the baby and he would just leave me to pass out on the floor. He would not let me go to the doc for meds and refused to take me to hospital... (eh, old shit, sorry bad times, bad times, lets just say not all hippies are nice)  Shocked

So, now it's a new, Wonderful husband, a new life, and a new self-diagnosis. I finally have insurance again, and a doc I like a lot. Aside from minor stuff like Mitral valve prolapse, low blood pressure, degenerative disc disease and facet arthritis I've always been really healthy, in fact I rarely even get a fever even if I do get sick. But after so many yrs without insurance and a couple recent issues with a possible misdiagnosis of diverticulitis actually being something to do with my gall bladder It's been hard to address the CH.

So far she seems a little doubtful about it being CH, but she put me on Topiramate, and for the first 3 days I had no hits at all! Miracle I thought, right? But then it all crashed, I mean EVERYTHING! I was getting unpredictable hits all day and night and I was on an emotional roller coaster from hell! I could not think straight, I was afraid I'd even forget to wipe my own arse before I got up! Then I had this silly nurse give me the run around, not understanding that I couldn't make it to my appt. without bringing all my kids (especially when it's all I can do not to cry all day as it is) I asked if she could just have the doc call me instead. and she says "the doctor doesn't have time to call you, blah blah, she wouldn't listen to a word I said! and next thing I know she's having another doc call in a script for fioricet since my insurance wouldn't let me have more than 9 sumatriptan tabs a month WTF!!! I hate pain meds! I am not a Junkie! It's even in my file at the top!
My brain wasn't working, I'm new to this insurance thing and I had no clue that I could shop around and get 20 tabs of triptans for less than $50. CVS wanted almost $400!
I thought I had no hope for the peak of this cycle until I got fed up and went into the walk in clinic no longer caring that I was balling my eyes out the whole time. I ended up seeing another doc there I like and she told me about shopping around, set me up with a larger quantity, and advised me on how to taper off the stupid anti-seizure stuff. (I was supposed to be part of some trial or something, don't remember, don't care, just glad I'm off it!)
I did however, out of desperation due to it being the peak of my cycle and all opt for the prednisone. So far it seems to have knocked the beast off cycle a bit. Except the first night when I was falling asleep I felt like I was having a bit of an acid trip, that was weird. It's only the second day and I've only had one attack, on off shadows, a bit of ocular/sinus pressure and occasional piercing pains.

I have also been taking a 550mg. magnesium gluconate for about a wk now and co q-10 and 550 mg. ginger (which has always been effective at weakening my attacks) as well as lots of water caffeine and energy drinks (taurine) for 4 wks.

So I've been doing so much research lately and have a bit of over load and confusion about melatonin. I hear that a lot of people get attacks during REM sleep. Doesn't melatonin increase REM sleep?  I do get most of my attacks an hr or two after going to sleep, and during the peak of my episodes  I'll be woken by the beast every 2 to 3 hrs a night. I'm wondering If I should even try. Also, does anyone know if Cannabis really does up melatonin synthesis, or if it has really helped them or not. I'm just not into all that any more but anything that works well...
ooh, also my well water has a lot of calcium should I even bother taking that too? I'm not sure of it's bio availability.

I will be trying the O2 soon, if not from the doc, my husband is about to get his welding equipment in soon, so I'll be trying that as well. I've always done breathing exercises at first sign and when attack subsides. not to mention just pure panic hyperventilating when in pain. yeah... ha ha that always helps.
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« Last Edit: Jul 10th, 2011 at 9:29pm by JessintheGarden »  
 
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JessintheGarden
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Re: Hello! It's all starting to make sense now!
Reply #3 - Jul 10th, 2011 at 6:49pm
 
Thank you so much for the welcome! Been researching almost too much lately!
The energy drinks definitely help a lot, especially when I get one upon waking in the morning. Can't wait to try the O2! Love your posts btw. Never thought I'd ever write on a message board or be part of any support group but I'm a believer! You all have helped so much and I've only now started writing.
Don't drink any more so no prob there.
Not sure if I can afford more specialist appts right now. Or if I can even get an appt before my cycle ends, but we'll see. Thank you Thank you Thank You!!!
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JessintheGarden
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Re: Hello! It's all starting to make sense now!
Reply #4 - Jul 10th, 2011 at 7:07pm
 
Oh, about the doc disbelieving, I think it has more to do with the fact that she doesn't want to believe I've been in that much pain. So far I have been the one suggesting the treatments, and she admits she ism't very knowledgeable about CH. She is usually very good about sending me to a specialist for everything, almost too much. I'm sure she'll suggest it next visit.
I've just gotten this insurance about 4 months ago and I've already been to the ER once, seen 2 specialists for unrelated things and have been to the family practice 5 times all ready, kinda feel bad about it. It's like I'm falling apart all at once!
I'm almost afraid they'll drop me or something due to this "previous condition" thing. Anyone know anything about that btw? I supposedly have a really good plan through blue cross blue shield n.c. Eventhough they still won't give me more than 9 sumatriptan pills a month. Angry 
But that's ok, hopefully I can get off all that stuff once I try the O2! Wink
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Guiseppi
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Re: Hello! It's all starting to make sense now!
Reply #5 - Jul 11th, 2011 at 12:05am
 
Having one of those frustrating nights, typed a full page response to you and the fu&^%^%ing internet at the hotel crashed!!! Anyways, I'll try again. Lay off the canabis when on cycle. A vaso-dilator, it will aggravate CH, bring you some real slammer headaches. Topirate I believe is the same med as Topomax. Sometimes called Dopeymax for a side effect some experience...as you did...of becoming a bit loopy on it. Verapamil is the typical first round prevent for CH, worth talking to your doc about if she's open.

Melatonin. I don't know exactly how it works, those who use it successfully start in the 9 mg range, about 30 minutes before bedtime. Some go as high as 18 mg but go up slow, give each dose a few days to see if it works. Many can eliminate or reduce the number of nite time hits with it.

If your doctor won't believe your level of pain get another doctor. That's a basic level of trust and if she doesn't believe you on something that basic I think you're headed for a world of hurt staying with her. She has already admitted she knows very little about CH, just sayin.......

Check out our sister site   clusterbusters.com         they use some "alternative" methods to bust cycles. It's not as easy as chewing a tab and being pain free, so do spend some time on their site and dialogue with members of that board who have been succesful. may be an avenue you will be interested in.

Read the topic in the meds section, 123 pain free days and I think I know why. It's a simple vitamin/mineral/anti inflammatory regimen bringing relief to many. Keep asking questions, keep reading, you have much learning to do, we'll help you all we can.

Joe
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wimsey1
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Re: Hello! It's all starting to make sense now!
Reply #6 - Jul 11th, 2011 at 8:03am
 
Everything Joe said, and again, before you "try" the O2, please read the link about the most effective use of O2. So many try it in such a way they find only minimal relief. The best is a high flow delivery system (25lpm+) coupled with a nonrebreather mask and breathing so as to hyperventilate as quickly as possible. I and many have found aborts within 3-5 minutes as opposed to 30-45 minutes. Also, the imitrex injections are way better than the tabs the imitrex tip to the left stretches a typical 6mg dose into three 2mg doses. Good luck and God bless. lance
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JessintheGarden
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Re: Hello! It's all starting to make sense now!
Reply #7 - Jul 15th, 2011 at 12:27am
 
Ha! Understand the Internet frustrations! Stinkin' I pad thing i'm using just quit on me and I was just about to post! Ah well... I tend to write too long anyway.
Off the topomax finally. Prednisone seemed to help, but 2days later I,m gettin more hits and they're more unpredictable. Temporary fix and Not a sufficient dosage from what I've read anyway. Thanks about the tip on MJ, almost tried it, but luckily, I checked in for responses first. Triptan pills working ok, but I'm probably taking them for simple shadows sometimes in fear of waiting too long to see if it's an actual attack. Nasal spray always gives me a sore throat the next day. Insurance won't approve anymore triptans this month, so I haven't gotten the injections yet. They always did work the best though. great tip on the rationing btw!
My husband just got his welding equipment in and Im just waiting on the mask to come in. Not sure if I should even bother with the script for the O2 since we have multiple large tanks and I work at home right now anyway.

Wondering if benadryl will help me get some sleep for a couple nights though. Dont think i've had more than 4hrs a night for almost a month now. I hear it keeps you out of REM sleep, for the most part anyhow, which might be part of my trigger at night? This is where I'm getting confused. and why I haven't yet tried melatonin. Usually I can fall asleep almost anywhere, anytime I want no matter how much, how consistent or how well I sleep at night.  I have 3 boys though and am very active.
Still have quite a few Q's about the melatonin and sleep in general. Should I start another topic?

I'll look into the 123 pain free days thing next.

Really love my doc. She's really open, and is studying more into CH. She was just supprised that I have been in that much pain. She never questioned me when I told her i had migraines when I met her cause I had been dealing with them for so long. I'm sure she figured I had been evaluated correctly in the past. She is trying to get me to a neuro asap. (if only my insurance werent being such a BTch!) We just haven't had much time to address this issue. (There's concern about my gallbladder right now too.) My brain was so f' ed  from that dopeymax (as it was so eloquently put) that I was actually too paranoid to make too many appt.s and seem overly hysterical after seemingly dealing with this so well for so many years. whatever the heck that was going through my head at the time IDK! It's all a painful blur now.

Ha! There I go again. Guess since I'm not much of a talker it all comes out when I write  Cheesy
So... Sleep,melatonin,benadryl???



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Guiseppi
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Re: Hello! It's all starting to make sense now!
Reply #8 - Jul 15th, 2011 at 11:24am
 
Either...........some use benadryl, some use melatonin, it's trial and error, see what works for you. It's kind of the rule of thumb for ALL things CH, what works for one doesn't always work for all.  Wink

Joe
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RichardN
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Re: Hello! It's all starting to make sense now!
Reply #9 - Jul 15th, 2011 at 7:25pm
 
  I used melatonin to good effect . . . just don't be surprised (or alarmed) if you have some grogginess if you get a breakthrough attack at night.  I can remember waking, and for a minute wondering . . "what woke me up . . . oh yeah, HIM again" and reach for the mask and crank up the 02.

   Be Safe,   PFDANs

       Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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