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Vanessa Back Again Still Suffering (Read 1190 times)
Vanessa
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Vanessa Back Again Still Suffering
Jul 20th, 2011 at 6:15pm
 
Hey Im Back and still suffering.Been to my primary care Dr. for them to keep me on my Topamax and imtrex,wouldnt even disscus oxygen w/ me I was so flusterated leaving her office,I left in tears.To go home and have my typical afternoon attack,to which imtrex is becoming useless.Long story short regaurdless of the preventative meds Im on everything that use to work is no longer, and my cluster headaches that use too start in early march and be gone by now have not gone.And dont follow the same predictable clock anymore.They still come w/ a vengance at some odd time in the middle of the nite or wee hour in the morning but I cant fool it anymore by setting my alarm an hour b4 it comes to wake and beat it.Its to unpredictable now.The Dr.s make no sence I saw a new Neuro on Mon. And was Emailed by a very nice guy w some very informitive info. on oxygen therapy from this website, I took this info to my neuro. and he said I had to get it from my primary care DR. and we kno she wont give the time of day when it comes to talking about oxygen.So what do they do perscribe more drugs verapamil now, oh and tramadol,I DONT WANT NONE OF THIS CRAP< I HATE THESE FREAKING DRS I HATE HAVING 2 TO 3 OF THESE FREAKING HEADACHES A DAY RIGHT NOW I JUST CANT HANG I NEED HELP IM PARALIZED BY THEM........LOVE AND PAIN VANESSA Cry
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Guiseppi
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Re: Vanessa Back Again Still Suffering
Reply #1 - Jul 20th, 2011 at 9:59pm
 
Where do you live? We need to get you referred to a doc who knows CH and cares.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Read this link and consider going the welding oxygen link if you can't get the oxygen prescribed.

Go to your vitamin or health food store and get some melatonin. Read the label, we've seen the best results with:

n-Acetyl-5-Methoxytryptamine

Apparently there are several different types. Anyways, take 9 mg, about 30 minutes before bedtime. Give it a few days, you may have to adjust the dosing up, some go up to 18 mg. Many can avoid the wake up night time hits this way.

Go to the medications section of this board and read the post, "123 pain free days and I think I know why." A simple vitamin/mineral daily supplement that's bringing relief for many.


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Finally check out this link for some non main stream treatments that are turning out some great results. Hang in there, we're with you.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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bejeeber
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Re: Vanessa Back Again Still Suffering
Reply #2 - Jul 20th, 2011 at 11:24pm
 
Well Vanessa your doctors certainly are negligently ignorant (a term I think I just coined Cheesy).

Who wouldn't be frustrated and at the end of the proverbial rope in your situation?

Unfortunately your doctors are typical, but FORTUNATELY you came here where some very effective strategies and treatments have become well known.

Guisseppi/Joe just gave you a great summary, and NONE of the stuff he mentioned requires a prescription from a doofus doctor. There's real treasure in his post, so please explore it thoroughly.

The way you describe how imitrex isn't working for you causes me to wonder if it is in the pill form? Doctors still incessantly blunder by prescribing pill form, when it is the injection and inhaler forms that are WAY more effective for CH.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Skyhawk5
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Re: Vanessa Back Again Still Suffering
Reply #3 - Jul 21st, 2011 at 12:36am
 
You HAVE to know more than the Doctor unfortunately. This site will give the info you need. Read your brains out and you'll see.

Welcome to CH.com,    Don
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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wimsey1
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Re: Vanessa Back Again Still Suffering
Reply #4 - Jul 21st, 2011 at 8:45am
 
You can also try slamming an energy drink that has a combo of at least 1000mg taurine and 85mg caffeine (monster, red bull, etc) at first sign of a hit. Works best with O2 but may help by itself. Follow up on finding a headache specialist bcause you do need to suffer needlessly. Blessings. lance
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Andy T
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Re: Vanessa Back Again Still Suffering
Reply #5 - Jul 21st, 2011 at 9:11am
 
Hi Vanessa
Sorry your back, not good!! I, as with everyone here, totally get what your going through. I had several years of strangely enjoyable, predictable episodes. Yes enjoyable, because I knew exactly what was coming, I knew what I was going to have to do and I knew I could limit their effect on my life. Late last year that changed dramatically, I had a megga episode and I didn't know the rules. I was exhausted, in agony most of the time and felt on the edge of a nervous breakdown. I somehow made it through, then found these guys, what a massive help they all were / are.
What I do know is these guys lead me to O2 and I lead my Neuro the same way, with the documents I printed from this site and a few others. But if I hadn't got him on board, or my GP, I'd have done what you clearly need to do, CHANGE your doctor for one who's not a total plank. I get some things are often easier said than done, but YOU are the one in pain and it can be helped dramatically.
I hope your soon PF
Regards
Andrew
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bejeeber
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Re: Vanessa Back Again Still Suffering
Reply #6 - Jul 21st, 2011 at 12:58pm
 
wimsey1 wrote on Jul 21st, 2011 at 8:45am:
...you do need to suffer needlessly....


Forgive me for butting in here Lance, but Vanessa, Lance is a great, very helpful guy who always leaves encouraging replies, and you probably realized right off that this was just one of those inevitable typos that a spell checker won't catch - he undoubtedly intended to say "you don't need to suffer needlessly".  Smiley

Lance I hope you're at the next conference, and that your original quote here can be emblazoned on a plaque as part of an award ceremony or something.  Grin Cheesy Sorry, just got back from the NashCon, and ribbing each other appears to have become the social norm, at least when Guiseppi is discussing Racer1's accent, or when Mosaicwench is denying Guisseppi any 'knucks'. Grin
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« Last Edit: Jul 21st, 2011 at 3:34pm by bejeeber »  

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Guiseppi
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Re: Vanessa Back Again Still Suffering
Reply #7 - Jul 22nd, 2011 at 12:01am
 
or when Mosaicwench is denying Guisseppi any 'knucks'.

LOVE...where is the love??? Roll Eyes
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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wimsey1
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Re: Vanessa Back Again Still Suffering
Reply #8 - Jul 22nd, 2011 at 9:50am
 
Embarrassed  Yup, that's a big oops and probably ought to be on a plaque or t-shirt.  Thanks for the catch and the vote of confidence. Recently cut the tendon in my right hand so I'm having to learn to type with 6 fingers...things do slip by that way. I also hope to see all ya'll next year. If God wills and the crick don't rise and all that. Blessings. lance
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