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Topic: Officially diagnosed...I suppose (Read 317 times) |
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elguru
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Officially diagnosed...I suppose
« on: Nov 7th, 2007, 2:41pm » |
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I am new to the group...just had 1 or 2 previous posts...at that time had not been diagnosed officially by a neuro until just two days ago..
Upon seeing him and after a few questions, he actually said, "you seem like you have done your research...what do you think you have?"
Clusters, I told him and he agreed.
He made the decision based on the symptoms I described...
I asked him what other physiological symptoms he can see or are necessary to be observed before he can be sure about the diagnosis...
He said my symptoms as described are good enough to diagnose me. ( I was a tad skeptical about this and not sure if I should be). I was glad he at least knew what clusters where though...actually made me smile.
I asked him about oxygen therapies....he said thats not very effective and is better left for chronic sufferers...I am episodic...in my previous post I was told to be wary of docs telling us that O2 isnt good..by a fellow member of this website.
He gave me prednisone...for 3 weeks...starting around 60 mg...taperring off every 3 days.
He also prescriped Imitrex...9 tablets for $220....pretty tought w/o insurance. I have not bought this yet, but am wondering if I should. Some attacks are unbareable but I am still alive so I just let it ride.
Some of my research showed the prednisone should usually be accompanied with something else as a preventative? Should I buy the Imitrex...which if I am not mistake is for acute attacks?
I also got some free samples from the doc for upset stomach relief since prednisone apparently causes upset stomach...the meds expired in 01/07....
So I am confused whether this was a good experience or a bad experience with the doc.
Just wondering if anyone who was initially diagnosed got prescribed the same thing and how effective it was...
Also, I am worried about knowing the effectiveness of the prednisone since my attacks started 4/5 weeks ago...How do I know whether the cycle ended or whether the medication worked? I suppose I should have seen a neuro sooner, right?
And does anybody know exactly how prednisone works....or where I can find that info? What it does in the body that makes it effective...I am a science major so I am always curious about this...plus, after being misdiagnosed and having trust issues with previous doctors, I like to be informed.
Sorry for the long post...
Just getting these things off my chest.
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seasonalboomer
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Re: Officially diagnosed...I suppose
« Reply #2 on: Nov 7th, 2007, 2:55pm » |
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well, it could be worse....
his comments about O2 -- dead wrong. I'm episodic and oxygen has helped me manage my CH considerably.
his script for Imitrex pills -- dead wrong - don't waste your money to buy them. Tell him you absolutely need that re-written for imitrex injections (or at least the inhaler-form). Pills take too long - way too long for CH efficacy.
His Prednisone script is good but it is not really considered a preventative that is as effective as others. This will likely break your cycle but you have a good chance of it picking up after you stop using it. Often it is prescribed until a more effective preventative can be ramped up and in place (some take a while to start being effective). Side effects for Prednisone can play hell on you - especially if you already really like food.
At least he seems to listen to you - so maybe he'll listen to you about the Imitrex and Oxygen if you bring him the right info.
Others will chime in regarding a good preventative strategy. I don't personally use, opting for a more "reactive" management strategy.....
Scott
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Guiseppi
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Re: Officially diagnosed...I suppose
« Reply #3 on: Nov 7th, 2007, 3:01pm » |
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A little bit of knowledge can be a bad thing. In this case it's really bad. While it's impressive he knew what CH is. he really stopped impressing me there. 02 is the first line abortive for both episodics and chronics. He clearly hasn't read any recent research in that regard.
Prednisone is a transitional medication. I use a prednisone taper while i ramp up on my lithium. If I do a prednisone taper without starting on the lithium, when the prednisone taper hits anything below 30 mg a day, I get absolutely creamed by head aches far worse then before I started the prednisone. I don't mean to shout "the sky is falling" but this gentleman is setting you up for a hard ride.
The imitrex pills by themselves probably aren't worth the money. I'd only try the oral if i had oxygen to huff while i waited the 20-30 minutes for the pills to be absorbed into my blood stream. Without 02 I'd be at max pain by that point and the imitrex pills wouldn't help anyways.
I've never had a stomach problem with prednisone. I get a little grumpy and i break out with back acne when I go off it, that's about it for side effects for me. Get yourself to a qualified neuro and get oxygen. As well meaning as this doctor is, his complete ignorance of CH treatments is going to leave you in a lot of pain.
Guiseppi
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vietvet2tours
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Re: Officially diagnosed...I suppose
« Reply #4 on: Nov 7th, 2007, 3:29pm » |
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Oxygen is my lifesaver.
Potter
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Bob_Johnson
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Re: Officially diagnosed...I suppose
« Reply #5 on: Nov 7th, 2007, 3:54pm » |
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Print this and give to your doc. He will recognize the source.
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Headache. 2005 Jan;45(1):98. Related Articles, Links
CLUSTER.
[No authors listed]
Rozen TD. High oxygen-flow rates for cluster headache. Neurology. 2004;63:593 The two most effective cluster abortive agents are injectable sumatriptan and inhaled oxygen. Because most cluster headache sufferers are cigarette smokers and at high risk of coronary artery disease, many develop contraindications to triptans. Oxygen, the safest of all cluster therapies, is not effective for every patient. In Kudrow's landmark study, 75% of patients responded to 100% oxygen at 7 L/min, although only 57% of older chronic cluster headache patients had relief. A recent study documented a gender difference in response to oxygen because only 59% of female cluster patients responded to oxygen, whereas 87% of men did. In most textbooks and articles on cluster headache treatment, patients are instructed to use 100% oxygen via a nonrebreather face mask at 7 to 10 L/min. The rationale behind this prescribed oxygen-flow rate is unknown but has become doctrine since the Kudrow study. Prescribing higher flow rates of oxygen up to 12 L/min has recently been suggested, but there is no documentation that this may improve efficacy. Higher oxygen-flow rates (up to 15 L/min) are not known to benefit cluster headache patients refractory to standard oxygen therapy. Three cluster headache patients who demonstrated no response to standard oxygen therapy were exposed to higher flow rates of oxygen (14 to 15 L/min) to assess response. Comments: Once again, Dr. Todd Rozen's observations will change my clinical practice!-Stewart J. Tepper, MD I have questions: Were these empirical observations or do Drs. Kudrow and Rozen know how rate of flow affects oxygen delivery? Is oxygen uptake higher with higher flows? After all, 100% oxygen is 100% oxygen unless under hyperbaric pressure! Perhaps higher flow rates dry the nasopharyx to a greater extent. If patients perceive a higher flow rate, might this be an enhanced placebo effect? It seems like an interesting study to be conducted, and it would be useful to test if using nasal cannulae is just as good. Pulse oximetry and arterialized capillary blood gases could be used to monitor oxygen saturation and CO(2) retention/carboxyhaemoglobin levels in smokers.-David S. Millson, MD.
PMID: 15663630 [PubMed - as supplied by publisher]
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Also,
http://www.plainboard.com/ch/chtherapy.pdf
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)
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As for the diagnosis: No problem. There are no lab tests, etc. for CH. A careful sorting thru the symptoms does it.
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| « Last Edit: Nov 7th, 2007, 3:56pm by Bob_Johnson » |
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Bob Johnson
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DennisM1045
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Re: Officially diagnosed...I suppose
« Reply #6 on: Nov 7th, 2007, 9:28pm » |
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Way to go Bob! Take the o2 info and the link to your Dr ASAP. If he doesn't change his tune, find another one. You need to be on a transitional med by the time that pred taper goes or at least an m-tank to get you through. Good luck...
-Dennis-
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RichardN
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Re: Officially diagnosed...I suppose
« Reply #7 on: Nov 8th, 2007, 12:12am » |
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I can't take Imitrex (arterie blockage and high cholesterol), so 02 is my only abortive . . . can usually kill the beast in minutes if used early-on in the attack.
Many here use 02 as the first line of defense and then use the injectible Imitrex for the hits the 02 doesn't abort (see "imitrex tip" . . . link on left). Besides being effective for 60-70% of us, 02 is inexpensive and virtually no side effects.
Keep reading . . . keep asking. . . you've hit the motherlode of CH info/caring/sharing.
Be Safe, PFDANs
Richard
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BarbaraD
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Re: Officially diagnosed...I suppose
« Reply #8 on: Nov 9th, 2007, 6:58am » |
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Also, get some Red Bull (or another high energy drink) and chug-a-lug at the first sign of a hit. Sometimes that will abort the hit.
Get some O2 - that guy is WRONG about that one. It's been the lifesaver for most people here. He just isn't up on his research at all.
Ergotomine pills are a lot cheaper than imitrex if you go the pill route, but take about 20 minutes to work. I can't take the imitrex and have sworn by them for years. It also comes in suppositories which work a lot faster, but if you go that route you need to get the Cafergot PB (if not they'll make you deathly sick at your stomach and you'll have another problem). I usually take the pills with 25mg of phenergan to kill the naseau.
Either educate this doc or find another one.
Hugs BD
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