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Title: Can anyone help a newbie out before my next attack Post by Preemiemama on May 31st, 2004, 10:01pm I know another round of pain is just around the bend. I can not get into the neuro until July. I call every single day but it remains as is..July. This crap started 3 weeks ago. Out of nowhere, I had a twinge of pain in my right cheek that quickly rammed it's way to my right eye. I'm prone to migraines ( diagnosed with them when I was 16, 33 now) and I thought to myself " oh boy, this is gonna be one whopper of a migraine" Immediately I grabbed my purse and took some of my typical migraine preventative medication. Neurontin. I took 300 mg's of that because it's never failed me with reducing severity of migraine. It didn't touch it and within minutes I was in absolute agony. Never in my life had I had such intense facial pain. I work across the street from a major teaching hospital and I went straight there. My blood pressure was out of sight due to the pain. They did a stat CT of my head and it was fine. My right eye had turned red as if I had pink eye. It was so weird. My nose was all congested, everything. I wasn't able to speak for myself. My coworkers called my mother who works a short distance away and she met me in the ER, she talked for me because all I could do was take my right hand with it trembling from pain and try and push my eye out of my head. She kept saying something's wrong, this is not my daughter with a migraine, this is something more, etc. Finally, finally the facial pain subsided just a little and I had one hell of a pounding headache on that side. As if whatever started *morphed* into a migraine. The doc said my ct scan was normal, by that time my blood pressure had dropped just a little but my heart rate was still high from the pain. They loaded me up with IV pain killers, dilaudid and mom drove me home and said that it was most definately a cluster or varient of cluster, see my neuro for follow up or return to the ER if necessary. When it starts, it starts as an underlying throb/ache in my right cheek/upper teeth. From there it radiates to along the side of my nose and eventually finds it's way to the center of my right eye and it becomes the pain from hell. I breathe so shallow during the intensity of pain that once it subsides a little, my chest is literally sore. My eye ball is sore afterwards. My head will feel sore. I can't talk, can't function, can't sit still, nothing. I take my right hand, make a fist and use my knuckles to press as hard as I can around my eye and forehead. I've done it so much I have red areas on my knuckles. :o Today, about 2 pm, it started again and there wasn't a damned thing I could do about it. I was perfectly fine this morning. Whatever it is, always begins in the afternoon. Usually around 2-3 pm. I don't wake up in the morning with it. It starts as that underlying ache/throb and within minutes it's full force and I'm miserable. Painkillers don't really touch it. They knock me out is all. I get nauseated with the attacks but no vomiting is present. I think the nausea is simply from the pain. I always get nauseated when I hurt so bad. I can't really cope with the attacks, severity, how to lesson them, etc. I can't do anything until I am seen by the neuro in July. Sorry, but that's a long, long time to wait to be seen in my opinion. I've been going to this practice since I was 25 yrs old so I'm not a new patient there. He's just booked solid. He has certain clinic days, the other days he's teaching neurology at the med school here. I have runs of ventricular tachycardia and the triptans are out of the question for my migraine treatment but this is no migraine at all. Also, after the pain has subsided, I feel weak, drained, I'm sweaty, and get a weird feeling of *numbness* in my face afterwards and my eye will be so, so sore. After awhile, I'll be fine and it'll come roaring back. This is just unbelievable pain. I become a different person. I've never tried to gouge my own face or eyeball before ( I apologize for being graphic) but when it hurts that bad, all I can think about is tearing my eye out and tossing it against the wall or something. Again, my sincere apologies for being graphic, that's just how bad the pain is though. You all can understand what pain does to your mind, etc. I'm hurtin again, bad twinges, what the heck am I supposed to do before July when I see my doc? Sorry for the length, just wanting some advice on how to deal until then. I can't keep running to the ER. I'm going broke doing that. I have a PCP but my neuro stuff he doesn't treat. Oh hell here it comes..help me out people!!!!!!!! |
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Title: Re: Can anyone help a newbie out before my next at Post by Charlie on May 31st, 2004, 10:32pm Hi and welcome to the fold. Most of what you say does sound like clusters. Typically, clusters come on like a ton of bricks fast and then dissipate almost as quickly. Mine lasted about 20 minutes or so. I'd have about 5 a day, two of which were nocturnal. Clusters will wake you out of a sound sleep. Nobody can sit still or rest with this horror. . There are a couple things that may help. Try some very vigorous exercise when you feel one coming on. Running or something like it affects circulation. Anything that draws a little blood away from your head is the idea. You might try cold water, some use hot, or cooling an area to affect blood flow. Here is a technique that I used very successfully: http://www.netsync.net/~charlies/ Good luck and let us know how you are getting along. Charlie |
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Title: Re: Can anyone help a newbie out before my next at Post by BlueMeanie on May 31st, 2004, 10:54pm Sorry to hear of your pain. If it comes really fast then slowly goes away it could definately be Clusters. You don't necessarily HAVE to see a Neuro to get help. My regular Doc gives me just about any med I want or need for Clusters. The only med he WON'T give me is 02. Try getting a walk in appointment in the morning. Offices usually always have standby visits. Read all you can about the meds discussed here and on the left of this page. Good luck to you. PF vibes heading your way. |
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Title: Re: Can anyone help a newbie out before my next at Post by Dave_Emond on Jun 1st, 2004, 3:46am Wow! ... tough to do, as so many "Clusterheads" react so differently to what helps them most. Sorry to say as well ... even when you do see your Neuro ... it may take many attempts at different meds to find one or a combination that might help. As you'll hear in here often, what works for one ... doesn't work for another. (Ask your Neuro first about oxygen ... to many docs miss this treatment right off the bat.) Myself ... no medications work and I'm chronic, so .. like you ... have to find other ways to cope during attacks. Charlies technique he posted is good, and you may have luck with it as this is new to you and you're not filled with all kinds of other "doctors" notions. (Charlie: I'm getting a little better at it ... still practicing and finding some help.) Depending on the severity of the attack, there are options you can try. Most all include diversions, diversions ... diversions! On lower level attacks, I can get in the shower and turn the water on very hot and blast it over my head and neck. Heavy attacks, I need for someone to fill a hot water bottle and force it (cause I can't move my hand away) to my temple ... then I'll usually grab on to it and press against something. DO NOT lie flat on your back during an attack, it'll just draw it out longer. (Some prefer ice packs over heat, try both.) Turn on your TV or Stereo loud, every little thing that can just divert your attention even the slightest bit, is just that, at least a slight diversion. Some will use the water treatment on the link to the left of this message board. Some find rigorous excercise helps. None of these will rid you of the pain, the idea is to divert as much attention away as possible. Please don't try diverting pain with other pain ... this will not help! Keep talking to everyone here, we all understand, few others will. Charlies technique as well as any of the mentioned diversions, think about them often while not under attack, try to teach yourself how you'll react when the attack comes. During full blown attacks, you'll not be able to think clearly, so try to teach yourself to react on impulse to whichever method helps the best. Keep in touch and best of luck, sorry you had to come here, but someone is always here for you. (Don't worry about graphics ... we know.) Hope this soon passes, Dave (What do we call you? Pree? I'll never remember Preemiemama ... in fact ... I had to keep looking back just to type that ;) ) |
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