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Title: New here Post by Bandette74 on Dec 9th, 2004, 8:10pm Just recently diagnosed with clusters. Annoying to know that I've been suffering with these for years, and no one bothered to diagnose me before. They used to send me home with a script for antibiotics and a diagnosis of sinusitis. I'm going on the 3rd week of this episode, but thankfully I can go for up to 2 years without any episodes. This is the worst it's ever been for me, though. I'll be walking around, feel the thing coming on, and within minutes I'm suicidal/homicidal, banging my head, nose leaking, eye tearing, bulging and bloodshot, suffering in excrutiating agony. A couple hours later--just fine. Warn out, but fine. Exahsted and frightened, but fine. This goes on at least once and up to four times a day, but every morning just as I wake up. Good morning?! My doctor won't actually treat these things, so I have to make an appointmnet with a neurologist, which has been another ordeal. So, in about a month from now, and this episode will probably be over by then, they might prescribe something for me. Meanwhile, I get to spend quality time in emergency rooms and clinics. Wow--how did I get so lucky? |
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Title: Re: New here Post by Jonny on Dec 9th, 2004, 8:13pm on 12/09/04 at 20:10:02, Bandette74 wrote:
Believe it or not....you are lucky. .......................................jonny |
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Title: Re: New here Post by john_d on Dec 9th, 2004, 8:13pm Sux to be in hell but always nice to find other people suffering there too. Glad you found here, Welcome! |
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Title: Re: New here Post by Tim_Z on Dec 9th, 2004, 8:16pm Welcome and hang in there. Tim |
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Title: Re: New here Post by Bandette74 on Dec 9th, 2004, 8:17pm on 12/09/04 at 20:13:46, john_d wrote:
thanks! |
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Title: Re: New here Post by Bandette74 on Dec 9th, 2004, 8:18pm on 12/09/04 at 20:16:59, Tim_Z wrote:
appreciate it. i've never even heard about these things before, but that didn't make the pain any different through the years that i've suffered with them. |
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Title: Re: New here Post by nani on Dec 9th, 2004, 8:20pm Welcome and sorry you're here. Who diagnosed and then refused to treat you? What a jerk! You may be able to get an ER doc to prescribe verapamil for you. Possibly an abortive like imitrex, too. Ice helps a lot of us. Look around the boards here and at the OUCH site and you'll find lots of info. When you do see the neuro...push for a treatment plan even if your not in cycle. You need to be prepared for the next time. Pain free wishes... |
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Title: Re: New here Post by Bandette74 on Dec 9th, 2004, 8:26pm on 12/09/04 at 20:20:13, nani wrote:
excellent advice! thank you. i will do this. i had an er dr. prescribe 6 pills only of relpax, but that only seems to help a little if i take it way in advance, when i first feel it might be coming on. if i wait until it's an actual attack, it does nothing. plus, i only have one of these pills left, so even if it is useful, it won't be after tonight. pain-free wishes to you all, as well! |
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Title: Re: New here Post by Sean_C on Dec 9th, 2004, 8:29pm Welcome Bandette, sorry you had to be here. I hope it passes soon Sean....................... |
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Title: Re: New here Post by BlueMeanie on Dec 9th, 2004, 8:31pm Welcome Bandette, I suggest you go to the neuro anyway, cause you never know when another cycle could be lurking just around the corner. Read the medical info and take it with you. 02 is a cheap med that works for many. Hope your cycle ends soon !!! |
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Title: Re: New here Post by Jonny on Dec 9th, 2004, 8:32pm on 12/09/04 at 20:26:56, Bandette74 wrote:
Ice packs, hot/cold showers.....go out to the car and put your face in the AC vent, exercise real fast. May not work but it has for many. .....................................jonny |
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Title: Re: New here Post by Bandette74 on Dec 9th, 2004, 8:32pm on 12/09/04 at 20:29:02, Sean_C wrote:
thanks, sean |
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Title: Re: New here Post by Bandette74 on Dec 9th, 2004, 8:36pm on 12/09/04 at 20:32:09, Jonny wrote:
thanks. i'm searching for just about any tips, as you could imagine. i've noticed ice helps some--still excrutiating, but it's a little calming for me, anyway. and yeah, funny about the car A/C vent. i've noticed that, too. |
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Title: Re: New here Post by Bandette74 on Dec 9th, 2004, 8:39pm on 12/09/04 at 20:31:35, BlueMeanie wrote:
02 as in oxygen? i've only learned about that here on the net. the ER never even suggested it. i will go to the neuro--i'd like to have a plan in place for the next time. which could be a few months to a couple years from now. i cycle but not regularly. |
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Title: Re: New here Post by Sean_C on Dec 9th, 2004, 8:39pm on 12/09/04 at 20:36:11, Bandette74 wrote:
It can be ten below zero and I'll go in the car and blast that AC LMAO........................it really does work ;;D Sean................................. |
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Title: Re: New here Post by Jonny on Dec 9th, 2004, 8:41pm Ok, last but not least......02, have you tried it? Let me know if the doc wont give you 02, I will set you up ;;D |
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Title: Re: New here Post by Bandette74 on Dec 9th, 2004, 8:42pm on 12/09/04 at 20:41:34, Jonny wrote:
nope, i haven't even heard about it until i got here (on-line) |
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Title: Re: New here Post by Jonny on Dec 9th, 2004, 8:44pm LOL....See above ;;D |
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Title: Re: New here Post by Bandette74 on Dec 9th, 2004, 8:48pm on 12/09/04 at 20:44:12, Jonny wrote:
i'll call around tomorrow, if no luck, i'll be lookin for ya ;) |
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Title: Re: New here Post by Jonny on Dec 9th, 2004, 8:50pm ;) |
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Title: Re: New here Post by Redneck on Dec 9th, 2004, 10:02pm Damn the beast! Hate it found you. the 02, AC, ice (Iperfer a cold rag) and tons of other things. Finding a "good" doctor is the most important step. Good luck and hang in there. You Ain't Alone! |
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Title: Re: New here Post by Cerberus on Dec 9th, 2004, 10:05pm If you know whats good for you...then take the time to learn from the wealth of knowledge here. And Jonny is right....you ARE lucky. Welcome to the house that pain built. Ramon |
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Title: Re: New here Post by ClusterChuck on Dec 9th, 2004, 10:44pm See if the doctor that diagnosed you will at least give you a prescription for O2 (yes, oxygen). It is relatively cheap, has very few side effects, and is VERY effective for most of us. BUT, it must be done the right way. Click on the OXYGEN INFO button on the left of your screen. It tells you the proper way to do it. And, as far as I am concerned (remember I am NOT a doctor), forget about the relpax pills. By the time they get through your digestive track, and into your system, the hit is over. Pills are generally worthless as an abortive. Check you PM's. I gave you my phone number, if you wish to talk to a clusterhead in person. If you do not have unlimited long distance, send me your number, and I will call you. I am a 26 year survivor, and the last 6 as a chronic. You CAN survive this, and lead a somewhat normal life. You are now home, and part of this family (as whacky as it is!), so welcome home, and welcome to my heart. Chuck |
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Title: Re: New here Post by marlin on Dec 9th, 2004, 11:37pm I think you are lucky. I've been at this for 27 years and only found meds in the past 8 or so. Believe me, knowing what I know now I wouldn't fight this beast without a full arsenal of meds. O2 is a no-brainer. Your regular doc can write a script and even my shitty Aetna covers it. The rest of the meds should be prescribed by a neuro. Get a good one that at least attempts to appear to give a shit. One that has treated CHs is preferrable. I have had real good success w/ Imitrex INJECTIBLES. Ask your neuro for a sample if you're a candidate (not everyone can take it). If it works you're going to kick yourself for waiting to see a specialist. This site is a wonderful resource. I will be going to one of the meets. In all these years of struggling I've never met another clusterhead in person. I feel like an alien that looks like everyone else but would really just like a little alien company. There aren't many of us, 0.1% of the general population was the last estimate I saw. Good luck and I hope your cycle ends soon. |
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Title: Re: New here Post by Bandette74 on Dec 9th, 2004, 11:50pm on 12/09/04 at 22:44:11, ClusterChuck wrote:
awesome! thanks so much, chuck. Daphne, here. i truly appreciate it, and will be in touch. obviously i've become a member of a strange new subculture--i wish we didn't suffer these unique pains--but at least i found "here". thank you, all! [smiley=me&mb.gif] |
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Title: Re: New here Post by RichardN on Dec 10th, 2004, 1:28am 02 and Verapamil worked for me . . . when finally found this site after (like many) more than a year of mis-diagnosis and non-working meds. The 02 is truly a wonderful abortive most of the time for those of us it does work for. I have also started using melatonin (OTC) with good benefit. Welcome to clusterville . . . a better bunch of lunatics than you'll meet anywhere. PFDANs Richard P.S. Identify your triggers - - they vary from person to person |
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Title: Re: New here Post by Carl_D on Dec 10th, 2004, 1:35am Welcome Bandette. Sorry you have these things, but glad you found us. Peace, and checkout the links to the left. Carl D |
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Title: Re: New here Post by K-9 on Dec 10th, 2004, 2:27am A lot of good advice given above. Welcome!!! But sorry you have to suffer. There are a lot of great people here. |
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Title: Re: New here Post by Jeepgun on Dec 10th, 2004, 9:36am Welcome! So sorry you have reason to be here, but glad that you are finally in a place where you can find accurate and helpful information. Verapamil helps a lot! Hang in there! |
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Title: Re: New here Post by Bandette74 on Dec 10th, 2004, 11:53am on 12/10/04 at 09:36:30, Jeepgun wrote:
thanks! just stopped dancing for my morning visit from the beast. been talking to neurologist's office, emergency clinic office and insurance company. thankfully everyone seems helpful, even the insurance co. now i just need quicker appointments to get scripts to avoid ER visits. neurolosit's office told me that yesterday they closed early because they had no appts. scheduled, but now they're booked until the 20th. they were apologetic, and suggested that the emergency clinic dr. might still hook me up with scripts until my appt., but to call them back if no luck with clinic dr. either i'm dancing with the beast or dancing with "the system", but as annoying as it is, i wouldn't consider it a horror story yet. the only one who has refused to help me is my primary doc, but he did seem to give me a good referral... just glad these attacks don't seem to last more than a couple hours. there's no better feeling than when the pain goes away! |
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Title: Re: New here Post by marlin on Dec 10th, 2004, 12:05pm Hang in there. At least you have the prospect of help on the horizon to keep you motivated. Sounds like you're taking the pain OK. Don't get discouraged. Sounds like you're a reasonably "ordinary" episodic, like me. I respond well to O2, trex and the pred was a pleasant surprise this past cycle. Nothing else I tried worked in time to be of any help before my cycles would end naturally. |
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Title: Re: New here Post by Bandette74 on Dec 10th, 2004, 12:30pm on 12/10/04 at 12:05:28, marlin wrote:
yeah, thanks. it's funny, but when i'm in pain it's horrible--i bash my head against things, yell, tear and leak, but as soon as it's over, though i'm worn-out from the pain, i can still jump up and live the rest of my day. i'm in college, trying to get into law school and i work midnights on the weekends in a group home with adults dually diagnosed with substance abuse and psychiatric disorders. i've had attacks at work, but i just ride them out. i haven't had attacks at school yet--hoping these go away before classes resume. so far, i'm coping very well, and i am optimistic that i will respond to a comprehensive treatment plan. i have no other medical problems, so i hope if i apply the information here and get medical support, i'll be able to keep on track with the other activities and goals in my life. |
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Title: Re: New here Post by marlin on Dec 10th, 2004, 12:47pm Ya know, your last post makes me think back to when I was getting slammed in college. It was pure hell. In fact, when I was a couple of months from graduating I was getting hit daily, usually in the afternoon, probably because my entire sleep cycle was all messed up with all-nighter deadlines or parties. I really didn't know whether I could graduate much less maintain a reasonable life with all the brow-beating visits from the beast. I was hurtin'. The funny thing was when I was about to graduate the job maket was real anemic. I got only 1 job interview and I actually got hit right before I was to go into that interview. Wasn't my best interview as you might imagine and not surprisingly I didn't get a call-back. I thought I was screwed - no job lined up, the specter of unrelenting CHs that would likely prevent me from getting one...I was getting depressed. But the CHs subsided and everything seemed to work out OK. So just keep that positive attitude you've got. The truth of the matter is, that's all that really counts in the long run. |
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Title: Re: New here Post by Bandette74 on Dec 10th, 2004, 4:55pm on 12/10/04 at 12:47:44, marlin wrote:
the sleep schedule thing worries me most. i work midnight shifts three days a week then i switch to sleeping at night the rest of the week, and sometimes this switching around along with all-nighters due to papers and studying result in episodes of insomnia. those who call me lucky, i do understand you. i can normally sleep until 4:30 - 5AM before i get hit, and i have not had to deal with too much insomnia since this episode hit. also, i'm on winter break from school--though finals were scary due to the pain--i made it through with excellent grades. i've even been able to take a full week off from work here because i'm hardly ever sick. i'm a little frightened about what will happen if this doesn't end soon. i'm pretty sure i'll be okay with work--i just hope my professors are understanding if this goes on that long... i don't expect it to... but it hasn't stopped yet, and i've been chronic since just before thanksgiving... plus no real meds. are opiates like percocet/codine ever prescribed to help with pain? i don't like the idea of taking them, but i figure if i have to do something like study, take a test or finish a paper, i could function if i had to through a bad one. this has been a particularly rough day with three headaches already. i just can't get anyone in the medical community to help me now--i need to wait a couple weeks. i'll start trying again tomorrow morning. |
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Title: Re: New here Post by marlin on Dec 10th, 2004, 5:12pm Forget any painkillers. I went to the ER once and got morphine. Didn't do shit. Another time I got a cocktail of meds IV that flat-out knocked me unconscious. I probably still had the HA but slept it off for 13hrs and felt groggy for at least another day. Get O2. I heard that you might be able to get some at your local firehouse if you can make it there during a hit. Problem is, you need to hit the O2 right away, before the CH goes too far. If I get to that point I reach for the trex. My advice is work on getting in to see a neuro. |
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Title: Re: New here Post by Bandette74 on Dec 10th, 2004, 5:24pm on 12/10/04 at 17:12:35, marlin wrote:
thanks so much for the info! i have the neuro appt on the 20th. just need to get through until then, i suppose. |
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Title: Re: New here Post by Gator on Dec 10th, 2004, 5:24pm Sorry you have to be here, but welcome. Check your PM's. Gator |
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Title: Re: New here Post by Bandette74 on Dec 10th, 2004, 5:31pm on 12/10/04 at 17:24:50, Gator wrote:
thanks gator! got the PM, and I can't tell you all enough how much it means to me to be able to not only communicate and whine to people who understand what I'm experiencing, but that know more than I do and can offer advice. You all are wonderful--thank you so much! My friends and family kind of shake their heads. They care and are concerned--they feel pretty helpless, but they just can't relate. Plus, I hate whining in person. I don't mind it so much on a message board, and it's pretty cathartic for me, so I really am grateful you're all here. I hope to be just as supportive to you all as I continue to get acclimated here. |
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Title: Re: New here Post by john_d on Dec 10th, 2004, 6:28pm on 12/10/04 at 16:55:43, Bandette74 wrote:
In the military they had me switching back and forth from 12 hour mids to 12 hour days, It gave me the worse, most miserable cycle I ever had. Hope that changes for you soon. |
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Title: Re: New here Post by Charlie on Dec 10th, 2004, 6:48pm Welcome to our madhouse. Most of us have been driven there at one time or another by this horror. I agree with the others here. It's a good idea to stockpile meds for when you need them. They treat us like addicts. Here is the reason I'm here. This is a technique the worked well for me: What follows is a technique learned from a neurologist: I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice. I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain. Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance. I hope this technique is helpful and I wish you the best of luck. Charlie (keep in touch) |
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Title: Re: New here Post by Bandette74 on Dec 10th, 2004, 6:51pm thanks charlie! hope you're well! i'll certainly give it a shot |
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Title: Re: New here Post by ClusterChuck on Dec 10th, 2004, 7:42pm How about asking the neuro to give you a prescription for O2 in order to carry you over till you see him. He might give it to you, as the side effects are so minimal, and the results (for many) are so spectacular. It is worth a shot. And If you keep bugging him enough, maybe he will just give it to you just to shut you up! Haha!!! Whatever works! Chuck |
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Title: Re: New here Post by Bandette74 on Dec 10th, 2004, 9:40pm on 12/10/04 at 19:42:22, ClusterChuck wrote:
lol, the old squeeky wheel gets the oil... well, i'm pretty sure i'll wake up with a hit tomorrow morning, then once that's clamed down, i'll start on the phone again, begging and asking and so forth. i'll probably end up in the clinic again--they were supposed to return my call today but didn't. so i'll drive down there all runny nosed and with my teary eye, and i'll get that damn oxygen and give it a try... thanks again, so much everyone... the damn thing's back again, so i'm off to dance... [smiley=shore.gif] |
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Title: Re: New here Post by cootie on Dec 10th, 2004, 11:49pm Hey Bandette....I remember when Brad was given antibiotics and sinusitis crap over and over then after relentless days of predictable attacks they decided it was stress and tried to go that route with him scripting valium and tranquiliizers which he wouldn't touch. Ourselves we began to fear it was a tumor after that.....he went a long long time before he got on the rite track. Now were lucky our internalist doc can take care of him. Don't know of any script pain meds that work for this crap either. Yer in a good place here fer info and friends. Brad's cycle momma Pam |
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Title: Re: New here Post by Bandette74 on Dec 11th, 2004, 11:44am on 12/10/04 at 23:49:02, cootie wrote:
just hearing/seeing the word sinusitis irritates me now. if i had known that there wee ways to treat this versus swallowing useless ibuprofen and antibiotics... ugh! i admit that although i've obviously suffered wth these since i was a teenager, this is the worst it's ever been. before i'd get one or two kip 8-10s a year. now i'm at nearly one or two per day. usually they hang around a kip 6-7, though, so again, comperably, i'm pretty lucky. |
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