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Prense
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Newcommer to the site...
« on: Feb 26th, 2003, 11:08pm » |
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Greetings,
Having read through some of this site's vast information on this subject, I doubt I will be shedding any new found light on anything. However, I will share my experiences...
First of all...I thought I had it bad until reading some of the "horror" stories here. I was diagnosed with CH in the summer of 2001. I have actually been having the attacks (cronically) since 1992 at the age of 20. At that time, I had never heard of a CH and attributed the attacks to stress, diet or something else that I MUST have been doing to myself. At any rate, the attacks continued at a rate of approximately 4 to 5 times a month at an intensity of 5 KIP. The majority of the time, the pain is focused at my right eye, but occasionally on the left. I would have to guess about 80/20. In about the year 2000 (I am guessing here) the severity increased to 7 KIP. Shadows, as described here, have almost always occured prior to any attack. No over the counter meds have really helped however Motrin seems to help with the shadows. I have yet to find anything other than time to end an attack. Direct pressure to the affected closed eyelid seems to feel good yet extremely painful at the same time if that makes sense. Other symptoms I have experienced was uncontrollable tearing (normally the affected eye), nasal blockage (again, typically on the affected side), an extreme increase in heart rate, nausea (typically on the tail end of a long attack, eg 2+ hours). I would have to admit that I have never banged my head on anything, so I am assuming I have not experienced anything near as bad as it can be.
The worst attack I have had was the one in 2001 which sent me to the hospital. That is when I was diagnosed and promptly prescribed Verapamil for prevention and Maxalt for an attack. The Verapamil seemed to decrease my attacks to 3-4 times a month as well as reduce the severity, but I experienced side effects (dizziness mainly) that I did not expect and discontinued use for a few months. I started back, stopped and once again started back on Verapamil today. Basically, I was rather confused about whether I needed to take this everyday forever or just whenever I felt like I needed to. Today, my doc tells me (not the same doc that prescribed this mind you) "It's up to you" <sigh> Ok, if I can get through the side effects, which I am told will pass with time, life will be "better". As far as the Maxalt goes...funky dissolving breath mint! It has done nothing for me.
As I said previously, mine are chronic and I can only recall a few times that I have awoke from a dead sleep (roughly 2-3 hours after going to sleep) with an attack. The times of the day that they occur are typically the same. Shadows start in the morning and if they don't go away with Motrin or something similar, an attack will typically follow sometime in the early afternoon.
I find myself unfortunate that I am in the military, specifically the Air Force which makes me feel that my medical avenues are somewhat limited. I guess I am satisfied with the preventive treatment, but I would VERY MUCH welcome something to use during an attack! I have not seen a neurologist about this although I would like to. My main concern is a misdiagnosis. If anyone has any experience with military healthcare on this subject, I would more than welcome some advice. Actually, I would welcome any advice about anything right now! ;D
Ok, maybe I should have went with a username of "Longwinded" I look forward to responses.
Best regards,
Prense
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JohnM
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Re: Newcommer to the site...
« Reply #1 on: Feb 27th, 2003, 7:35am » |
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Ask your doctor to try you on Imitrex Injections. They are painless, easy to self administer and get rid of the pain in 5-10 minutes. If need be take the first one in the doctors rooms to see if it works for you or if you have any bad response to it. Make sure you have no heart problems.
The first one can be a bit scary as you may feel tight around the chest, but it will pass rapidly and the relief is bliss.
I tried Maxalt last year as an alternative to the Inj and it also did nothing for me.
If the injs work for you, and my guess is they will, then at least you get some relief and a way of functioning at work while you look for a decent preventative, or manage to break the CH cycle somehow.
John
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scrumpies
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Re: Newcommer to the site...
« Reply #2 on: Feb 27th, 2003, 8:58am » |
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Hope you find something that works for you. Maxalt mlt 10mgs have been a god sent for me. After an attack begins i pop one and its over in minutes. I know this wont work for everyone.
I haven't banged my head on the floor but I do punch my left temple to the point of bruising. I do a kip 8.5 or higher. I am 38 and have been getting the attacks since I was 16. Was misdiagnosed with classic migraines for years.
Imitrex would work for me because I don't have symtoms prior to an attack other than a constricted pupil on the side of the point. But if you arent looking in a mirror you will never see it. Caught It a few times but not enough.
Lisa
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JohnM
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Re: Newcommer to the site...
« Reply #3 on: Feb 27th, 2003, 9:42am » |
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not quite sure I understand your comments Lisa
Imitrex is an abortive and you can take it anytime after an attack. Whether you do it 1 minutes or 1 hour into an attack ithas the same effect on most. It stops the CH in its tracks.
I usually wait at least 15 minutes to see if I am going to be able to ride it out before wasting an injection, but 9 times out of 10 I end up wishing I had just given the inj as soon as I feel the pain.
If the beast wakes me from sleep I always know what to do and then shoot up ASAP
John
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domm
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Re: Newcommer to the site...
« Reply #4 on: Feb 27th, 2003, 4:48pm » |
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Prense - welcome to clusterville. Unfortunately, your story is familiar. You didn't mention Oxygen as a treatment and I would encourage you to read up on it here and at the OUCH website. I use(d) Verapamil to treat this last cycle and it cut the cycle short. It took about 7 days to "build up" in my system and I had to adjust the dosage a bit higher after 5 days to get to PF. The first few days, I was a bit light headed, but that passed fairly quickly. Many CHers stay on Verap year round. My Doc told me after the cycle was over, that I should probably stay on a very low dosage. That way, when the next cycle comes around, I don't have to wait the week for build up, but simply can up the dose and go from there.
Good luck in finding the right set of stuff that works for you
domm
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Roxy
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Re: Newcommer to the site...
« Reply #5 on: Feb 27th, 2003, 5:23pm » |
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From one chronic to another....welcome!  Glad you found the place. There is a wealth of information here, and good people to help you.
on Feb 27th, 2003, 9:42am, jmorgan52 wrote:
Imitrex is an abortive and you can take it anytime after an attack. Whether you do it 1 minutes or 1 hour into an attack ithas the same effect on most. It stops the CH in its tracks.
If the beast wakes me from sleep I always know what to do and then shoot up ASAP |
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I always try the 02 first...when I feel the first twinge. I stick with it until I can see if it is going to do the trick. Sometimes it does.....sometimes it doesn't. But, like John says above....I save the trex to use when I know it's going to be a monster. No matter how late I wait into a hit....the trex does its work no matter what. I only use 2mg per shot. This splits each one dose vial into 3 shots.
Like John said again...when it wakes me up...it's usually way past the point of 02, and I'm grabbing for a needle.
Maxalt just melts in my mouth....and that's all it does for me.
Take care and try to stay PF,
Tracey
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Prense
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Re: Newcommer to the site...
« Reply #6 on: Mar 3rd, 2003, 4:13am » |
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Thanks for all the responses. I haven't had an attack or "monster" as some of you refer to it since Wednesday night although I have had some fairly strong shadows off and on. Sunday was PF, but the effects of the Verapamil is still bothering me. Friday night, I almost blacked out...I thought I had, but others around me assured me I didn't and I didn't quite hit the ground. The lightheadedness (wow, is that a word?) has yet to pass. When you are not used to such a feeling, it can be very uneasy. I still plan to get with my doc for a referral to a neuro to confirm/discount the diagnosis and ummm, I don't know...just see what another opinion is from a "professional." Actually, I am still hoping for him/her to offer something that will work during an attack and that will still allow me to "function"...work or otherwise. I really would not prefer a comatose state to CHs...although I say that now while I am PF hehe. Again, thanks!
Christopher
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JohnM
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Re: Newcommer to the site...
« Reply #7 on: Mar 3rd, 2003, 4:28am » |
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Prense
I manage to function pretty well at work using the Imigran/Imitrex injections. I usually wait to see if I am going to be able to tough it ourt at work with painkillers, but if it gets bad I use the inj and can get through the day with little problem.
JOhn
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Prense
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Kerry is an idiot!
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Re: Newcommer to the site...
« Reply #8 on: Mar 3rd, 2003, 4:47am » |
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Cool! Like I said previously...I am ignorant to all abortive methods and their complete effects except the Maxalt breath freshener, but I am hoping to change that soon!
Thanks,
Christopher
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