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Finally going to a Doctor, Finally became a member (Read 1100 times)
MaggieMae
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Finally going to a Doctor, Finally became a member
Nov 10th, 2009 at 12:43pm
 
Where to start...I have been looking and referring to this site for the past 5 years. I have been pain free for one whole year and counting. I finally got insurance this may (when my cycle should have started again). I decided to wait till the attacks came back to finally see a specialist. This Sunday I was headed to South Lake Tahoe for a mountain bike ride, on the way my right eye would not stop tearing up and my noes kept running. I kept thinking to myself I don't suffer from allergies what it going on...About 4 miles into the climb of the ride I felt what I like to call the "Twinge", I think this is what most people call a "shadow". I still had about 1 more mile of climbing and I was kind of freaking out. I thought this is it, here we go again, and I'm with about 8 people. I finally made it to the top of an 8 mile downhill and things where only getting worse. It was only a matter of time before I lost vision in my left eye. I was scarred, really really scarred. I had an 800mg of Ibuprofen in my bag and took it and also drank some caffeine, none of which has ever helped before. The more I stood around at the top the worse I was starting to feel. I went for it and just tried to focus on my surroundings...about a mile into the awesome downhill I actually started to feel better and not worse. It felt like a miracle. It has been three days since the ride and I still have the twinge. It's like stepping on egg shells trying not to set it off. I am terrified! I see a Neurologist for the first time tomorrow. What should I expect and are there any questions you feel I should ask?
Here is a little more background on my history:
The first 2 cycles both began in the fall, 3 to 4 months in length.
The last 2 where both in the early spring, for the same duration.
The only doctors I have seen have been from the student health center at the local collage. I cleared them out of all there Imitrex Injection Samples. That's all I've had medication wise and it worked.
Any insight would be extremely helpful.
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bejeeber
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Re: Finally going to a Doctor, Finally became a member
Reply #1 - Nov 10th, 2009 at 7:19pm
 
First of all I'd say its of critical importance to read the "imitrex tip" on the left (if you don't see links on the left, please mention it in a reply here, I'm kind of taking a survey Smiley).

This info details how to use half doses (just as effective as full doses!), thereby doubling the amount of doses available to you, and halving the side effect risk.

2nd, there's the oxygen info link on the left. This newer approach to using O2 has legions of enthusiastic converts here, and would be a great 1st line abortive to try, with your imitrex as a backup.

A preventative seems like it'd be a real good idea, but I'll keep my blabbin' short for now and let others pipe in.  Smiley

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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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Joni
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Re: Finally going to a Doctor, Finally became a member
Reply #2 - Nov 10th, 2009 at 11:56pm
 
Read the info to the left, print it, and take to your doctor.  Especially the medical info with drug suggestions...preventative and abortive.

Good luck!
Joni
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Experience:  That most brutal of teachers.  But you learn, my God do you learn.  -C. S. Lewis
 
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MaggieMae
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Re: Finally going to a Doctor, Finally became a member
Reply #3 - Nov 12th, 2009 at 9:32am
 
So I went to the doctor and I do suffer from CH. Not a big surprise. He armed me with an arsenal of prescriptions. Imitex pill form, and Oxygen. He also gave me Propranolol a beta blocker as a preventative. Has anyone had success with this drug? I saw in another post people referring to this drug as "old school", I don't care about that, I just want to know if it works?
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Weatherman
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Re: Finally going to a Doctor, Finally became a member
Reply #4 - Nov 14th, 2009 at 6:29pm
 
Seams I hear most people doing better with the "calcium channel blocker" verapamil.
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Amstaveley
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Re: Finally going to a Doctor, Finally became a member
Reply #5 - Nov 20th, 2009 at 11:58am
 
Hi MaggieMae
You mentioned:
"He also gave me Propranolol a beta blocker as a preventative. Has anyone had success with this drug? I saw in another post people referring to this drug as "old school", I don't care about that, I just want to know if it works?"

Years ago when my doc diagnosed me with episodic migraines he prescribed Propranolol mid-cycle.  I'm not sure if the meds worked, but within about 3 weeks the cycle was over.  It may have been the end of the cycle anyhow.  One of the issues that I found with this med is that I have low BP and propranolol compounded it (which you'll find with any BP med) so I could only take it at night, before bed, otherwise I had fainting issues. 
I took it for another cycle as soon as the CHs began and it seemed to shorten my cycle marginally from 6-8 weeks to about 5-6 weeks.
Hope this helps!
My latest doc recommends verapimil and I am curious about its efficacy. 
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mom2klegirl
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Re: Finally going to a Doctor, Finally became a member
Reply #6 - Nov 20th, 2009 at 1:59pm
 
When a family doctor said I was suffering from migraines he gave me propranolol. And since at that time I thought I had migraines it seemed to work! About a week after taking it the headaches were gone but a couple months later a new cycle started and we realized it didn't work as well as first thought. The switched me to verapamil and that too seemed to work for a while but now I know it was just the end of my cycle and when the next cycle came the headaches came back.
I don't know much about CH yet but from what I've read so far different things work for different people so maybe you will be one of them that propranolol works for.
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angela.lambert
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Re: Finally going to a Doctor, Finally became a member
Reply #7 - Nov 24th, 2009 at 5:17pm
 
Hi Maggie,

I was on Topo first, didn't like the side effects (can't remember exactly what they were), now I am on Verapamil 320mg daily.  It definitely works for me, lesson the amount of attacks and their severity.  I didn't find success on Imitrex pills, but mucho success on the shot (refer to the side menu for the Imitrex tip).  I always O2 first before using the shot.  And last, 9mg of Melatonin at night.

How is your progress going?  Having any luck with the "arsenal" prescribed?

I hope you find this useful,
Angela
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