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Perediablo
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finally actual diagnosis
« on: Apr 18th, 2008, 12:36pm » |
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Hey all,
It's been a few weeks since I have posted. Been a pretty lousy bout with the beast. I went to my PCP today, he's a GP at the family clinic here. Instead of giving me a ref to a Neuro or headache clinic, he wanted to try something first. He gave me a 'script for Prednisone taper, and imitrex injections.
I am not familiar with either of these, as I have been a redbull and icepack aborter since I found this site. What should I expect? I am at the tail end of my normal cycle. Will these steroids extend the cycle?
Pretty heavy shadows going on right now. I have been experiencing something different this time as well. My scalp has a burning or tingling sensation nearly all the time now. Used to only happen right after a hit. With a nearly constant ping at the back of my head behind the ear. I say ping, because it pulses. Just a little weird.
Here's to hoping this works.
This is the first doctor that hasn't called me a drug seeker or sinus sufferer. I guess it might be because it's a teaching hospital? Texas Tech University Health Sciences Center, Pretty good people so far.
Eric
PF days rule!
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| « Last Edit: Apr 18th, 2008, 12:36pm by Perediablo » |
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"But I don't want to go among mad people," Alice remarked.
"Oh, you can't help that," said the Cat: "we're all mad here. I'm mad. You're mad."
"How do you know I'm mad?" said Alice.
"You must be," said the Cat, "or you wouldn't have come here."
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Superdave
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Re: finally actual diagnosis
« Reply #1 on: Apr 18th, 2008, 1:02pm » |
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Hey Eric,
I'm glad to hear youv'e graduated to a sufferer from an addict. It took me 5 years to reach that status.
I've done the pred taper, with any luck it may stop your pain in it's tracks.
PF vibes your way
Superdave
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Wow! you mean it's just in my head?
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Bob_Johnson
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Re: finally actual diagnosis
« Reply #2 on: Apr 18th, 2008, 1:45pm » |
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http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting
everything following. com/ and then hit enter.
====================================================================
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive
and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.plainboard.com/ch/chtherapy.pdf
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Bob Johnson
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Ray
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Re: finally actual diagnosis
« Reply #3 on: Apr 18th, 2008, 2:08pm » |
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Oxygen at 12-15 liters per minute with a NON-REBREATHER mask is helpful to most of us here. Please mention this to the doctor on the next visit and there will be others along soon [I hope] who will point you to the documents to print out and bring to the doctor.
Wishing you well,
Ray
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
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http://www.shadesgarden.com
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Guiseppi
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Re: finally actual diagnosis
« Reply #4 on: Apr 18th, 2008, 2:54pm » |
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We usually refer to prednisone as a transitional drug. It will provide 100% relief for me at doses as low as 30-40mg a day. I do a prednisone taper when my cycle starts, while I wait the 10-14 days it takes my lithium to kick in. Most don't take it for a very long period of time as prednisone is very hard on your body. Read the link Bob gave you about some of the preventative medications available to you.
The imitrex is a miracle worker for me when all else has failed. 3-4 minutes and the beast is in full retreat.
Oxygen is still my first line abortive. 30 years of dancing with the beast and oxygen remains my most consistent weapon. You'll hear this preached a lot on the board. It's damned effective, it's cheap, and has none of the drug side effects. 6-8 minutes of huffing 02 and I'm pain free back in my happy place! 
Glad to hear the cycle is winding down, do stick around when your cycle ends, hope it's soon for you!
Guiseppi
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Perediablo
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Re: finally actual diagnosis
« Reply #5 on: Apr 18th, 2008, 11:58pm » |
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If it is a transitional med, I wonder why he only prescribed it then? I guess if it works I'll have 9-10 PF days. That ain't nothing to frown at  I just hope that Beastie doesn't come right back all renewed and rested. I got everything crossed that I can cross. I don't think I could choke down another energy drink. The smell of them makes me twinge.
Eric
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"But I don't want to go among mad people," Alice remarked.
"Oh, you can't help that," said the Cat: "we're all mad here. I'm mad. You're mad."
"How do you know I'm mad?" said Alice.
"You must be," said the Cat, "or you wouldn't have come here."
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marlinsfan
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Re: finally actual diagnosis
« Reply #6 on: Apr 19th, 2008, 1:43pm » |
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If you think you are at the tail end and only getting shadows with nothing worse, I would stay off the steroids. Leave it for your next cycle. We all know it will come 
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RichardN
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Re: finally actual diagnosis
« Reply #7 on: Apr 19th, 2008, 3:03pm » |
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Re what Guissepi . . . in that Pred usually used as a prevent while other meds are building-up in your system . . . . that seems to be the recommended practice.
I can't speak from experience (haven't used it), but there is (I believe) a common experience of getting slammed when the Pred taper ends, if the other prevents haven't kicked-in. . . . and probably likely if you're not taking another prevent.
Hope I'm wrong about this . . . others will real experience please check in.
ABSOLUTELY copy the 02 info and take to your doc for script . . . don't wait for an appointment . . . 02 IS a recognized abortive for CH . . . a real miracle for most of us . . . and it's cheap, even if your insurance won't cover it.
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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mezza
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Re: finally actual diagnosis
« Reply #8 on: Apr 19th, 2008, 5:17pm » |
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I have had mixed results with pred tapers- my first two cycles pred taper stopped cycle in its tracks within the first week - no prevents etc- didn't know about those then and at that time didn't have a need to seek anything else out since pred taper stopped the cycle as soon as i took the first pill
This cycle- 6 weeks and now fading- 2 pred tapers did nothing- went on prevent and as soon as i did that cycle has been fading- No real ha in a couple of days and just some week shadows
So seems like from the posts it depends but from what i have read too preds is transitional med till prevent begins working
Imitrex is an abortive
Good luck and pf days to you
Kelly
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darknight
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Re: finally actual diagnosis
« Reply #9 on: Apr 23rd, 2008, 8:21am » |
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Hey Eric,
Glad to hear youre finally getting somewhere with a doctor.
I have imigran injectors although i havent used them yet as my 02 has worked since i was prescribed both in Feb this year.
I hope all works out well and u get to try 02 soon it may help.
Si
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Batch
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Re: finally actual diagnosis
« Reply #10 on: Apr 23rd, 2008, 1:57pm » |
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Eric,
One of the top medical centers treating cluster headaches today is the Michigan Headache & Neurological Institute (MHNI), in Ann Arbor, MI. There are a number of articles by Dr. Todd Rozen, MD one of the top neurologists in the country at MHNI specializing in the cluster headache disorder and the use of oxygen as an abortive therapy at 15 liters/minute. I've met with Dr. Rozen to discuss new types of oxygen therapy. Two of his articles on oxygen therapy are at the links shown below:
http://www.mhni.com/Articles/Articles.aspx?DocID=4255
http://www.mhni.com/faqs_high_oxygen.aspx
One of the best overviews on treating cluster headaches also comes from Dr. Rozen and it has a very clear rationale for the overall strategy in treating cluster headaches with three types of therapies: Abortive, preventative (prophylactic), and transitional. The link below will take you to an article that explains the rationale for each.
http://www.mhni.com/clusterheadaches.aspx#treating
In addition to any other cluster headache medications your doctor may prescribe, your prescription for oxygen should read:
"Oxygen therapy with a non-rebreather mask at 12 to 15 liters/minute flow rate AS NEEDED for cluster headache attacks."
The wording of this Rx is very important and must read exactly as stated above as many insurance companies will think you have COPD and not give you the proper mask, or regulator capable of a 15 liter/minute flow rate. Also, don't take "No" for an answer when you ask for oxygen therapy.
It's normal procedure for most neurologist to want to have an MRI or other tests first to make sure there are no other reasons for your headaches prior to prescribing oxygen therapy. Just make sure when these tests come back negative, he agrees to call to let you know they're negative and that he will also send the Rx for oxygen to you or your medical insurance company without your needing to go in for another expensive office call.
There's also a Medic Alert - ER Card that identifies you as a cluster headache sufferer. The card is located on the OUCH web site at the following URL:
http://www.ouch-us.org/downloads/ercard5807.pdf
Print out this card, fill in your personal info, take it to your
doctor/neurologist and have him/her sign it listing any other medications you may need if you need to go to the ER for a severe cluster headache attack. Without one of these cards in hand, most ERs will make you wait in pain and not provide rapid treatment for an acute cluster headache attack.
Oh yes... Oxygen therapy is very safe... Far safer than imitrex or verapamil. I'm an old US Navy Fighter pilot with more than 3000 hours flight time in Navy fighters. I was breathing 100% oxygen on
each and every flight from take off to touchdown and the average flight lasted over 2 hours... moreover, the flow rates were well over 30 to 40 liters/minute or higher when things got hairy. I'm still here. I've also used oxygen therapy for my cluster headache attacks for the last four years. In fact, I take no other medications for cluster headaches, as oxygen is the only therapy I use. It is 100% effective for me if used properly at a high enough flow rate and started as soon as I sense an attack approaching.
Take care,
V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, not any before nor after, that’s as lovely as a great airplane. Man has one virginity to lose in fighters, and if it is a lovely airplane he loses it to, there is where his heart will forever be.
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kcopelin
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Re: finally actual diagnosis
« Reply #11 on: Apr 23rd, 2008, 5:48pm » |
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Eric,
If you really are at the end of your cycle you may want to consider not doing the pred-there are side effects. Next cycle though-get in right away get started on pred, a preventative like verapamil or lithium and get that O2 high flow rate non-rebreather mask. You'll be armed for bear then.
In the meantime, if this is the tail end of your cycle, might I suggest a couple of things:
1. Rock Star Zero Carb-berry flavored-tastes good-has all the right stuff and low calories.
2. 9-12mg of melatonin at bedtime for nighttime hits
3. If melatonin alone doesn't do it, you can try adding benadryl 25-50 mg.
For me, the melatonin and benadryl have really helped the nigthtime hits, and that makes the daytime ones easier to cope with. I'm chronic (3 years, 2 months)
episodic for 24 years.
PFDAN
kathy
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Perediablo
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Re: finally actual diagnosis
« Reply #12 on: Apr 23rd, 2008, 6:21pm » |
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on Apr 23rd, 2008, 1:57pm, Batch wrote: I'm an old US Navy Fighter pilot with more than 3000 hours flight time in Navy fighters. I was breathing 100% oxygen on
each and every flight from take off to touchdown and the average flight lasted over 2 hours... moreover, the flow rates were well over 30 to 40 liters/minute or higher when things got hairy. I'm still here.
V/R, Batch
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Batch,
I'm an old Navy Aviation Electrician's Mate 2nd class. Flightdeck Troubleshooter and final checker. Flight controls were my forte. F/A-18A's and C's. I'm well versed in using the pilot's oxygen when nobody's looking just to kill that Key West hangover in the morning. What bird did you fly? Ironically it was the Navy docs that told me I had chronic sinusitis and the pain was imagined! LOL I once had (now knowing and looking back) what was a kip 8 on the flight line during an 8 turn 8 hot seat. That was pretty interesting to say the least! It was very cold outside, that helped a little, but I had to be helped to the hangar by a couple of planecaptains later. Anyway, nice to meet a fellow sailor. Maybe we can share a few sea stories.
Fair winds and following seas,
Eric
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"But I don't want to go among mad people," Alice remarked.
"Oh, you can't help that," said the Cat: "we're all mad here. I'm mad. You're mad."
"How do you know I'm mad?" said Alice.
"You must be," said the Cat, "or you wouldn't have come here."
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Perediablo
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Re: finally actual diagnosis
« Reply #13 on: Apr 23rd, 2008, 6:25pm » |
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Kathy,
Yes, I have found the energy drinks help. Actually Rockstar has 3 new ones. All coffee flavored. Vanilla, Roasted Mocha, and one other I can't remember. I prefer the Roasted Mocha. As for the Melatonin, it hasn't worked by itself yet. tried it for about a week and a half. Waiting on my doc to call back about the request for o2. Thanks for the helps.
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"But I don't want to go among mad people," Alice remarked.
"Oh, you can't help that," said the Cat: "we're all mad here. I'm mad. You're mad."
"How do you know I'm mad?" said Alice.
"You must be," said the Cat, "or you wouldn't have come here."
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Batch
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Re: finally actual diagnosis
« Reply #14 on: Apr 24th, 2008, 4:37am » |
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Hey Eric,
What a treat! Another CHer with salt in his blood and JP in his coffee that understands what it means to be haze gray and underway.
A carrier flight deck during flight ops is one of the most dangerous places in the world to work so Trouble Shooters and Final Checkers are my heroes and have always had my greatest respect. They got me safely off the pointy end and kept me from getting wet many times.
The F/A-18 Hornet must have been fun to work on with fly-by-wire and more computing power in one bird than a squadron of F-14s. I was in VX-4 during the YF-16/YF-17 fly-off competition and up at NWC China Lake when the first Hornets arrived.
I instructed in F-9F Cougars '67-'69, flew the F-8H/J Crusader '69-'75 during 3 West Pac deployments in VF-24/CVW21 on USS Hancock and VX-4 at Point Mugu. When we ran out of F-8s I transitioned to F-4N/J/S Phantoms '75-'81 with a long tour in VF-161/CVW5 on USS Midway permanently deployed in the OFRP at Yokosuka/Atsugi, JA. I finished up my flying days as an instructor in VF-121 at NAS Miramar, pulled a tour as Gun Boss on Kitty Hawk then three back-to-back staff tours before retiring in '91.
It's not too surprising that most doctors, Navy or civilian, have trouble diagnosing cluster headaches. When I met with Dr. Rozen at MHNI, he indicated the average Neurologist sees and diagnoses less than a handful of cluster headache sufferers in a career unless he's specializing in headache disorders. I forgot to mention that the burning or tingling sensation is likely allodynia, another symptom of a cluster headache attack. It usually happens only on the hit side of your head and face.
If you can make it, Joyce and I would like seeing you at the Dallas OUCH convention in July. We'll have plenty of time to swap sea stories face to face.
Take care,
V/R Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, not any before nor after, that’s as lovely as a great airplane. Man has one virginity to lose in fighters, and if it is a lovely airplane he loses it to, there is where his heart will forever be.
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