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Topic: turtlendog intro ( was CH and allergy treatments ) (Read 2115 times) |
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turtlendog
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turtlendog intro ( was CH and allergy treatments )
« on: Jan 20th, 2008, 2:46pm » |
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I've been suffering for a little over two years and diagnosed myself (misdiagnosed as migraines by 5 doctors) three days ago. Thank God at least now I know what I'm dealing with!
My clusters started one week after a Kenalog (a corticosteroid) injection for allergies and some research has indicated that CH may be treated by corticosteroids, but patients often slip back in to their pattern as the dosage is removed. This, I believe, is the mechanism by which I was introduced to CH in the first place. (Or I may have had them as a child and had a 20 year break)
I have long suspected the Kenalog injection and it has been about nine months since I have had one, though I have sought other allergy treatment in immunotherapy.
My question, How many of us are under some sort of allergy treatment?
I noted also, that Pseudoephedrine may be a trigger. Also, subcutanious histamine is enough of a trigger that it can be used to prove someone is suffering from CH.
I wonder if my immunotherapy may be holding me in cycle, if I still may be triggering from Kenalog withdrawal, or if I have just presented chronic and need to break the cycle.
Thoughts?
Notes below:
Corticosteroids
http://en.wikipedia.org/wiki/Triamcinolone:
Triamcinolone (trade names Kenalog, Aristocort, Nasacort, Tri-Nasal, Triderm, Azmacort, Trilone, Volon A, Tristoject, Fougera, Triesence;) is a synthetic corticosteroid given orally, by injection, inhalation, or as a topical ointment or cream.
On cluster headache treatment
http://www.guideline.gov/summary/summary.aspx?view_id=1&doc_id=6582
Corticosteroids
Prednisone and dexamethasone are rapidly acting transitional or suppressive prophylactic drugs that are used at the onset of a cluster period for up to 3 weeks while a maintenance prophylactic agent is initiated and allowed to take effect. Total relief from attacks is seen in up to 50% of patients. Prednisone is usually initiated at a dose of 40 to 60 mg per day for 3 days, followed by a 5 to 10 mg dosage reduction every 2 to 3 days until discontinued. Dexamethasone 4 mg twice a day for 2 weeks, then 4 mg per day for 1 week, is also effective. When corticosteroids are tapered, however, the cluster attacks tend to recur, so maintenance preventive therapy should be started at the time that corticosteroids are begun. During the steroid taper, recurrence of the cluster attacks often occurs when a physiologic level of the steroid is achieved (i.e., daily prednisone dose of 20 mg per day or equivalent). Corticosteroids are most often used in episodic cluster patients to break the cluster cycle. Potential side effects include insomnia, restlessness, personality changes, hyponatremia, edema, hyperglycemia, osteoporosis, myopathy, and gastric ulcers. Aseptic necrosis of the hip or shoulder has also been reported. The use of long-term corticosteroids is discouraged in patients with chronic cluster headaches because the incidence of side effects increases with prolonged use.
On triggers
http://www.clusterheadaches.com./about.html
Experimentally, attacks can be triggered in nearly all patients during a bout by the administration of 1 mg nitroglycerin sublingually (Ekbom, 1968), and in about 70 percent of patients by subcutaneous histamine (Horton, 1961). There is usually a latent period of 30 to 50 minutes before headache is triggered, whereas the peak peripheral and central vascular effects of nitroglycerin occur within 3 to 4 minutes of its administration and disappear in approximately 30 minutes (Bogaert, 1987). This, the appearance of headache does not coincide with the maximal circulatory effect of nitroglycerin, and the mechanism by which nitroglycerin causes headache remains unclear. A period refractory to pharmacologic provocation occurs after spontaneous or pharmacologically induced attacks and may persist for 2 hours or more (Ekbom, 1968; Horton, 1961). Therefore, valid provocative tests must be administered during an active bout, several hours after the attack has subsided.
Pseudoephedrine
http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Pseudoephedr ine
Pseudoephedrine is a stimulant drug that is commonly included in cold and allergy medicines. Although it is useful as a decongestant, it can disturb the Hypothalamus-Pituitary-Adrenal (HPA) axis. Pseudoephedrine decreases Melatonin production, and should be regarded with caution in cluster headaches. Some people on the cluster headache message board have associated the use of pseudofed with the onset of cluster headaches, although no studies have been performed to see if there is a causal relationship.
Edit: I edited the title since this thread wandered.
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| « Last Edit: Jan 24th, 2008, 10:35pm by turtlendog » |
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maryo
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Re: CH and allergy treatments
« Reply #1 on: Jan 20th, 2008, 4:59pm » |
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Hello and welcome.
Sounds like you've researched some leads, kinda doing the Sherlock Holmes thing. It's always good to know the source, and the whys and wherefores. The reason this website has a half a million posts is that very few of us have been able to decifer anything about this curse.
You might write back saying more about yourself -- gender, age, pattern of headaches, what you're doing that's helping, what's not helping, do you have a helpful doc (probably not if you've been misdiagnosed by 5 doctors -- which is basically my story).
Taking a wild guess, are you in your late 20s? This is when the beast most typically makes its appearance. Have you taken the cluster survey? That's how I found out I had clusters (rather than some disorder that made doctors wish I would go away).
Write back and let us know more about yourself!!
maryo
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maryo
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Re: CH and allergy treatments
« Reply #2 on: Jan 20th, 2008, 5:00pm » |
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Hello and welcome.
Sounds like you've researched some leads, kinda doing the Sherlock Holmes thing. It's always good to know the source, and the whys and wherefores. The reason this website has a half a million posts is that very few of us have been able to decifer anything about this curse.
You might write back saying more about yourself -- gender, age, pattern of headaches, what you're doing that's helping, what's not helping, do you have a helpful doc (probably not if you've been misdiagnosed by 5 doctors -- which is basically my story).
Taking a wild guess, are you in your late 20s? This is when the beast most typically makes its appearance. Have you taken the cluster survey? That's how I found out I had clusters (rather than some disorder that made doctors wish I would go away).
Write back and let us know more about yourself!!
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turtlendog
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Re: CH and allergy treatments
« Reply #3 on: Jan 21st, 2008, 12:20am » |
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Quote:| You might write back saying more about yourself -- gender, age, pattern of headaches, what you're doing that's helping, what's not helping, do you have a helpful doc (probably not if you've been misdiagnosed by 5 doctors -- which is basically my story). |
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I'm male, 35 and start nearly every morning with a kicking headache that wakes me from my sleep and I'm in to my first 20mg of Relpax of the day. Most days I can make it through on 20mg, but on others I sometimes go as high as 80mg before I realize that I'm wasting Relpax on a headache that will not respond. These are my bad days.
Sometimes the morning headache doesn't seem so bad and I wait to dose up. Eventually I do dose, it's just a matter of how long I wait.
For the most part I survive on Relpax, of which my insurance company will buy 10 40mg pills every 26 days. I cut them in half and hope for the best. I pay for the re$t, and it's getting expensive. I have tried several of the other triptans and found nothing as effective as Relpax, but it seems to be loosing its effectiveness.
I have a PCP that is helpful, though I suspect he has never seen a cluster headache patient before me.
My neurologist doesn't impress me, but has scheduled me for an MRI which I am interested to see the results of. I'm going to cut him loose as soon as I get the MRI.
I'm in the habit of considering my headache by the day. Not so much that they are that way, but that's how I measure them. One day, one headache.. All day. I need to be more diligent with my diary and try to see how long they really are.
The smoking gun for CH in my case is the alcohol trigger. Never had a problem before, but now that I'm in cycle, half a beer, half an hour, I'm in hell. Been telling all my doctors this, but nobody made the connection.
Interestingly, I just flew across the country to be at lower elevation ( I live at 5500ft ) for a month which seems to have provided some relief. Not full relief, but some. The relief was more during my first week away. I wonder if it was due to the lower elevation or the upsetting of my internal clock or some other factor...
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MJ
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Re: CH and allergy treatments
« Reply #4 on: Jan 21st, 2008, 12:52am » |
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removed an uninformed skeptical post to add this turtlendog.
Thats a potentially nasty drug kenalog, when injected.
http://www.medications.com/se/kenalog
It is also used as a topical cream and antiinflammatory.
Cluster headaches seldom last more than 2 hours. They may repeat a short time later.
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MJ
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turtlendog
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Re: CH and allergy treatments
« Reply #5 on: Jan 21st, 2008, 10:01am » |
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I do need to get more information on Kenalog. Thanks for that link. I am especially interested in any other relationships CH may have with allergy treatments. It seems to have several.
I recognize that my episodes, as I report them, last longer that what is commonly stated for CH. There might be a couple reasons for this.
1. My doctor has asked me to report my pain on a 0-3 scale and the knot in the back of my head and generalized pain after an attack almost always keep me above the #1 threshold to report as a headache.
2. I track my headache at the end of the day or go a couple days and report in batch mode. It gets old reporting the same thing all the time.
3. I am thankfully able, on most days, to medicate my headaches down to a dull roar. 20mg of Relpax will keep me going for about 16 to 24 hours most of the time. The problem here is the amount of medication that I'm taking, the expense, and the fact that I'm on it all the time.
4. I'm not that observant. I don't want to track my headaches, I want to work.
5. I have CH that are triggering migraine or something else. My headaches don't really fit the migraine category either.
6. I have misdiagnosed myself but share 80% of CH symptoms and triggers. I doubt that, but it is possible.
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turtlendog
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Re: CH and allergy treatments
« Reply #6 on: Jan 21st, 2008, 10:02am » |
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or
7. They are longer?
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Travis1980
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Re: CH and allergy treatments
« Reply #7 on: Jan 21st, 2008, 1:03pm » |
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Hello,
I am fairly new to the message board, but I have been dealing with CH for 11 years. I just wanted to chime in and say that typically within a 4-6 week episodic cycle I will have at least 3 headaches at a Kip 9 that last for 3-6 hours if not treated with an imitrex injection. In fact, this is exactly how I spent my morning. Everyone is different, though it does sound like you're on some questionable meds if it is CH. Good Luck, hang in there.
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turtlendog
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corticosteroid == my heaven == my hell
« Reply #8 on: Jan 21st, 2008, 2:15pm » |
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As indicated above, I believe that my whole experience with CH was triggered by Kenalog injection for allergies.
As many sufferers, I have have been willing to look at anything as a possible solution. One such solution is an existing AC separation in my shoulder. I'd had it for 7 years without trouble, but when the daily headaches started, I began to wonder.
Then the doctors started looking at my x-rays, calling their doctor friends over and saying things like "spectacular". We decided to do a cortisone injection at the site and see how my headaches responded. As soon as the doctor injected the cortisone, before the needle was removed, I had this inexplicable and incredible feeling of relief... and was headache free for a week.
Needless to say, I had the shoulder surgery. Which later failed and required another surgery.
But it was the cortisone that relieved my CH, and likely the withdrawal from it that brought them back.
My second surgery, to correct the first one, was five weeks ago. I had an inexplicable two days with no headache at all after my surgery. I've been racking my brain trying to figure out where those two days came from because THAT NEVER HAPPENS.
I had been thinking that maybe it was the oxygen I was on while under for surgery. That may yet turn out to be true, but I'd bet good money that they gave me a steroid. How do I know? Because my CH have been worse since my surgery.
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Jonny
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Re: CH and allergy treatments
« Reply #9 on: Jan 23rd, 2008, 7:59pm » |
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on Jan 23rd, 2008, 7:47pm, JEG_43MD wrote:
As a sidenote, there are two articles on emedicine.com regarding CH. One is well written, correct in its assumptions and treatments. The other article is not so good and it recommends Prednisone for the treatment of the headaches. There is a little argument on this site about that but I say it is the worst thing you can do.
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Just HOW the fuck do you know its correct in its assumptions and treatments?
Please tell me!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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starlight
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Re: CH and allergy treatments
« Reply #10 on: Jan 23rd, 2008, 8:11pm » |
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"correct in its assumptions and treatments"--I am not sure why but this is very funny indeed...
The self-assurance is amusing.
GED: Do you have medical training?
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starlight
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Re: CH and allergy treatments
« Reply #11 on: Jan 23rd, 2008, 8:12pm » |
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I mean JEG.
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AussieBrian
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Re: CH and allergy treatments
« Reply #12 on: Jan 23rd, 2008, 8:17pm » |
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on Jan 23rd, 2008, 7:47pm, JEG_43MD wrote:| I know something about this. Actually I know a lot about this. |
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G'day Turten, and congratulations on your research. The opinions of others are an important part of it - but only a part. Take nothing as absolute fact and trust nobody absolutely (except me).
Only gooder days ahead, mate, so keep looking forward.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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turtlendog
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Re: CH and allergy treatments
« Reply #13 on: Jan 23rd, 2008, 8:41pm » |
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on Jan 23rd, 2008, 8:17pm, AussieBrian wrote:
G'day Turten, and congratulations on your research. The opinions of others are an important part of it - but only a part. Take nothing as absolute fact and trust nobody absolutely (except me).
Only gooder days ahead, mate, so keep looking forward.
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I assume that was meant for me, turtlendog. Thanks. I'll keep it in perspective.
No doubt you can tell that I'm trying to take advantage of having access to this resource of people with experience who can, and hopefully will, help me out with their experience. One will need to separate the wheat from the chaff, of course...
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starlight
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Re: CH and allergy treatments
« Reply #14 on: Jan 23rd, 2008, 9:02pm » |
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Turtledog,
You and JEG have a very similar writing style, in fact, they are exactly alike--(I am good at noticing those things--one of the only useful skills I picked up as an English major years ago).
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turtlendog
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Re: CH and allergy treatments
« Reply #15 on: Jan 23rd, 2008, 9:21pm » |
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on Jan 23rd, 2008, 9:02pm, starlight wrote:Turtledog,
You and JEG have a very similar writing style, in fact, they are exactly alike--(I am good at noticing those things--one of the only useful skills I picked up as an English major years ago). |
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on Jan 23rd, 2008, 7:47pm, JEG_43MD wrote:| I know something about this. Actually I know a lot about this. |
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I would have written that like this:
Quote:| Actually, I know a lot about this. |
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Truthfully, I would have said something more like:
Quote:| Actually, I have studied this. |
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Don't be too harsh with your red pen as you look it over.
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starlight
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Re: CH and allergy treatments
« Reply #16 on: Jan 23rd, 2008, 9:29pm » |
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Troll.
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starlight
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Re: CH and allergy treatments
« Reply #17 on: Jan 23rd, 2008, 9:31pm » |
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Nice try though.
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starlight
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Re: CH and allergy treatments
« Reply #18 on: Jan 23rd, 2008, 9:54pm » |
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Oh and you are GadgetOllie also on the Meds page recommending mustard and ice treatments....
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Kevin_M
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Re: CH and allergy treatments
« Reply #19 on: Jan 23rd, 2008, 10:03pm » |
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Quote:| some research has indicated that CH may be treated by corticosteroids, but patients often slip back in to their pattern as the dosage is removed. This, I believe, is the mechanism by which I was introduced to CH in the first place. |
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I don't see how with your first statement you may presume the second. You did not post that info.
Quote:Prednisone and dexamethasone are rapidly acting transitional or suppressive prophylactic drugs that are used at the onset of a cluster period for up to 3 weeks while a maintenance prophylactic agent is initiated and allowed to take effect.
When corticosteroids are tapered, however, the cluster attacks tend to recur, so maintenance preventive therapy should be started at the time that corticosteroids are begun. |
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It looks like your first statement came from your posted info. You did not post the info to support your second statement.
Quote:| 1. My doctor has asked me to report my pain on a 0-3 scale and the knot in the back of my head and generalized pain after an attack almost always keep me above the #1 threshold to report as a headache. |
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Reporting the generalized pain "after an attack" and knot as a 1 is not reporting the pain of any cluster headache.
Quote:2. I track my headache at the end of the day or go a couple days and report in batch mode. It gets old reporting the same thing all the time.
4. I'm not that observant. I don't want to track my headaches, I want to work. |
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Five doctors diagnosed you without a headache diary or pain scale? If you have, then you should have those numbers. There is a Kip scale on a tab to the left.
Quote:| I'm in the habit of considering my headache by the day. Not so much that they are that way, but that's how I measure them. One day, one headache.. All day. I need to be more diligent with my diary and try to see how long they really are. |
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It would be far fetched for any doctor to diagnose clusters with this information. See what the neuro or a headache specialist says after the MRI.
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| « Last Edit: Jan 23rd, 2008, 10:16pm by Kevin_M » |
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starlight
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Re: CH and allergy treatments
« Reply #20 on: Jan 23rd, 2008, 10:03pm » |
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Wow, a few other personnas too on Getting to Know Ya also...dude what's up with that?
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starlight
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Re: CH and allergy treatments
« Reply #22 on: Jan 23rd, 2008, 10:21pm » |
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I just call it like I see it. If I'm wrong, I'm wrong--if you have only one personna great and I hope you get lots of help for your headaches.
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| « Last Edit: Jan 23rd, 2008, 10:26pm by starlight » |
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turtlendog
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Re: CH and allergy treatments
« Reply #23 on: Jan 24th, 2008, 9:31am » |
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on Jan 23rd, 2008, 10:03pm, Kevin_M wrote:
I don't see how with your first statement you may presume the second. You did not post that info.
It looks like your first statement came from your posted info. You did not post the info to support your second statement.
Reporting the generalized pain "after an attack" and knot as a 1 is not reporting the pain of any cluster headache.
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1. As you noted. The reason for my conclusion was found in other resouces.
2. This is not my statement. It is a quote from another source. I should have quoted it.
3. I RAREY get below k1, and spend almost every day reaching k5-k7 for a short time before the meds get me back down to k1-k2. These events are reported in my diaries as 2 on a 0-3 scale, for months on end.
This month I came east to see if I could somehow break the cycle, which I mostly have. Most of my time here is spent at k1 with a couple slips to k3. I've been dancing at k6-7 every 2 or three days here, but nothing like at home. On 1/17 I saw several hours at k8 which, needless to say, sucked.
As you might guess by reading the above, most of my diaries are at home. This month's is here, but since I've started trying to track more accurately (by the hour), there hasn't been as much to track. Time will tell. I'm not trying to have this disease. I'm trying to find out if there's anything I can learn here to get me out of this rut. I just hope the relief follows me home!
(Edited to add a kip level for dancing every couple days here)
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| « Last Edit: Jan 24th, 2008, 1:59pm by turtlendog » |
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turtlendog
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Re: CH and allergy treatments
« Reply #24 on: Jan 24th, 2008, 9:32am » |
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on Jan 23rd, 2008, 10:21pm, starlight wrote:| I just call it like I see it. If I'm wrong, I'm wrong--if you have only one personna great and I hope you get lots of help for your headaches. |
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I think you know you owe me an apology, and that wasn't it.
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