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Title: Need help fast, I may be done fighting! Post by Dave_Emond on Aug 31st, 2003, 12:35pm Hello my old friends and new, Haven't been in here for a while, serving on the OUCH BoD and the many other things going on in my life doesn't give me much computer time. I have to find time now, I always appreciate support in the forms of "hang in there" and such, but at this point I'm afraid I need more than that. I consider myself extremely strong in my coping abilities with Chronic CH and have tried unsuccessfully over 50 meds to find some kind of relief, no help there, and I have not taken meds for close to 2 years now. (I try Melatonin now and then for sleep, but it has not worked for some time now.) The only time I seriously considered suicide was when I was on Sansert, years ago. But lately, I'm not sure if I can make another night. A new symptom has occured, and I'm wondering if anyone else has had this same experience: After an attack that threw me from my chair last week, later that same evening I felt tremendous pain in my upper arm. (I'm almost positive I didn't injure my arm in the fall). The pain in my left arm feels like the pain in my head during CH attacks!? The pain increases with CH attacks. Nothing has ever rivaled the pain of Cluster attacks, and I have an extremley high pain tolerance. This is more than I can bear! As strange as it may sound, I'd swear it feels like as I have attacks on the right side of my head, all the ice picking, nerve ripping and unimagineable pain in my head simultaneously is occuring in my left upper arm? There is no pain across my shoulders from my head to arm, but I am convinced by now there is a relation. The worse the attacks, the worse the arm pain. As I rolled all night on the floor I was ready to give in, and even a little pissed that I couldn't think of anything in the house to do myself in. And now ... I don't think I could make it through another night of this. I never thought I would ever be one to want to give up, I'm almost an obbessive competitor who will not lose to anything and I've fought this CH for many years. One option maybe left, go to the ER tonight and have them tie me down, hopefully do some examinations during these extreme attacks. I don't know what to do really, I just know I can't just "hang in there" anymore unless something is done to stop this pain. I need real advice quick as I've reached the end of my rope and am too close to ending it forever. Anything sound familiar? Any technical advice? Hope I'll be back, but at this point ....? Dave |
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Title: Re: Need help fast, I may be done fighting! Post by jonny on Aug 31st, 2003, 1:19pm Dave, Sounds like the CH maybe fucking with your heart some how....pain in the arm sounds like a stroke or something. Get to the ER quick man!!!! ..........................jonny |
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Title: Re: Need help fast, I may be done fighting! Post by bammer on Aug 31st, 2003, 1:30pm Don't do it Dave... don't give up!! I am new to this site,.. but an old friend of the pain... Try to think of your family,.. your friends,... the good things in your life...!! Life IS worth living..!!!!!! I have had no experience of pain in my arms or anything,.. only my head... Talk to your Doc,... maybe he/she can help... My heart goes out to you,... take care...!! bammer |
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Title: Re: Need help fast, I may be done fighting! Post by Linda T on Aug 31st, 2003, 1:34pm Hey Dave - I'm with Jonny - get to the ER and quick. Sounds like it might be something else going on. Good luck. Linda T |
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Title: Re: Need help fast, I may be done fighting! Post by ave on Aug 31st, 2003, 1:47pm Agree, Dave, sounds like the warning signs of Angina Pectoris. Go to the ER NOW! Tell 'em about the arm first, about the clusters later. That way you'll get their attention. I will be thinking real hard of you. Good luck. |
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Title: Re: Need help fast, I may be done fighting! Post by Charlie on Aug 31st, 2003, 1:53pm I'm with them Dave. It may be circulatory which may be angina or maybe even a clot. Dangerous stuff so get to an ER. I wonder if you might have a hairline fracture? Might hurt everytime you move your arm. Just an idea. Tell them. They are hard to detect sometimes. Stick around. Suicide is damn hard on families and friends. I know. I've had two of them in my family. We need you Dave. Charlie |
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Title: Re: Need help fast, I may be done fighting! Post by Mastifflvr28 on Aug 31st, 2003, 1:56pm Dave, go to the ER. I got HUGE vibes coming atcha!!!! Let us know how it went, and good luck bro!! Mast |
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Title: Re: Need help fast, I may be done fighting! Post by Dave_Emond on Aug 31st, 2003, 2:11pm Okay ... I'm getting the point : ) I told my wife (Annette) everything, we've been reading the responses, and I've given her authority to be the boss ; ). Looks like we're heading for the ER now in a town about 30 miles from here. Will most likely stay the night in a nearby hotel if the doctors (as I suspect) just give me some Ibuprohen or the like and send me on my way. I don't feel once night sets in and my attacks hit full force along with this added pain that I will be capable of making decisions and may even need suicide watch. Will be within minutes of the hospital, I'd rather them see me in full attack than in just heavy shadows. Thanks for your advice and concerns, Your friend, Dave Will let you know ... |
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Title: Re: Need help fast, I may be done fighting! Post by Mark C on Aug 31st, 2003, 2:42pm |
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Title: Re: Need help fast, I may be done fighting! Post by Donna on Aug 31st, 2003, 3:30pm I may be too late.....you may be on your way by now, but just in case.......... I work in the open heart unit of my hospital as a cardiac monitor tech and believe me, this needs attention. Even Angina is a warning signal of an impending heart attack. If anyone there thinks you're being foolish, so what? And call an ambulence. and oxygen......that'll get you some quick attention. Going in the front door always guarantees a long wait and by then, the ha is gone. |
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Title: Re: Need help fast, I may be done fighting! Post by cathy on Aug 31st, 2003, 3:41pm Dave, i've probably missed you too....but I hope thats because your now in the ER getting the treatment you need.....Huge Vibes from across the pond.... Clusterheads don't give up EVER!!!! Cathy |
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Title: Re: Need help fast, I may be done fighting! Post by Hooter on Aug 31st, 2003, 5:34pm You're probably in the ER now, hopefully getting the help you need, or at least some short term relief and security while they find out what is going on. Meanwhile I am sending you and your wife the biggest positive vibes and prayers I can muster from over the pond. Hang in there, and come back soon to tell us how you are getting on. Please ask for help from the family before you get this desperate next time??Promise? Listening ears here 24 hours a day. Wendy the Brit |
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Title: Re: Need help fast, I may be done fighting! Post by kim on Aug 31st, 2003, 6:42pm I sincerely hope that you are or have been to the doctor for the above-mentioned symptons. Pain down the arm is scary and not cluster related(IMHO). Please please check this out and check back when ya can**** PFDAN and well wishes, Kim |
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Title: Re: Need help fast, I may be done fighting! Post by nancyc on Aug 31st, 2003, 8:56pm PLEASE PLEASE have your wife post as soon as possible..I am praying and know God is watching over you..as you have been here for so many of us clusterheads, we are here for you, bro...love you much, nancyc |
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Title: Re: Need help fast, I may be done fighting! Post by AlienSpaceBabe on Aug 31st, 2003, 9:49pm hugs and good vibes coming to you..... Lizzie |
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Title: Re: Need help fast, I may be done fighting! Post by maria9 on Aug 31st, 2003, 10:52pm Dave, I met you in Vancouver. You are not done fighting this, although I have to admit you have fought this as well as any of us could. I don't think that you have explored all the options. I know this goes against what many of of the episodics say here, but why not go to one of the chronic pain specialists and explore the methadone route. When you have a chronic pain condition it is so different from the wimpy episodic condition most of us suffer from. Dave, I have seen you in the pain that you describe, and the additional symptoms, lead me to believe that there is much more going on, please go get the help that you deserve. Please keep us informed, we all care about you and wish you the best. Maria |
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Title: Re: Need help fast, I may be done fighting! Post by Lori on Aug 31st, 2003, 11:20pm I'm very sorry you are at the oint you are at. Very glad though you could reach out here and tell your wife to take you to the ER for help. Praying you get the help and relief you so need. |
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Title: Re: Need help fast, I may be done fighting! Post by Artie on Sep 1st, 2003, 3:11am I hope you are ok Dave. |
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Title: suit up and show up Post by rumplestiltskin on Sep 1st, 2003, 8:36am ...I worry about anyone who knows all there is to know and has tried "everything". I was wondering why we hadn't heard from you. ...thats the only thing that concerns me about people who dissapear from "this board"...I always hope that they haven't fallen prey to there own devices. ...as for the methadone and other "heavy shit" that most folks advise against...although I don't believe they are the first or even the second thing to try...butt when a war torn weary soldier or sailor finds some relief there, I say "peace is where ya find it". Endure den |
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Title: Re: Need help fast, I may be done fighting! Post by Dave_Emond on Sep 1st, 2003, 10:05am Hi Everyone.. this is Dave's wife. He is okay at the moment!!! We went to the ER yesterday, and were treated pretty much as expected.. "want some Ibuprofen?" The doc finally did ask about narcotics, but Dave told him about all the horrible reactions he has had to every drug ever tried and the doc decided that he couldn't do anything. Suggested he repeat an MRI as soon as possible and go on from there. So.... we left with instructions to try 50 mg of Benydryl to maybe help him sleep that night and checked in to a nearby motel to be near the hospital for the much heavier nighttime attacks we knew would come. Sure enough at about 1am Dave woke me from sleep and he was frantic.. the pain now had expanded it's field to include his entire left leg as well as his arm and neck. We waited a bit, but as I watched him try to curl and hold his body against the pain I couldn't stand it any more and got him dressed and into the car for another ER visit. The same doc was there.. and not happy to be woken up by someone who had gone ahead and taken 50 mg of Benydryl every 4 hours instead of just the one dose he had really meant. He treated us pretty rotten, and when I lost it and started to raise my voice and the tears started to come he grabbed Dave by the arm and started yanking him around doing a supposed neuro exam.. then told him there was nothing he could do and that he was "afraid" to give him any narcotics because of medical history of reactions. We left, stunned, Dave in extreme pain, and just came home. The doc feels this is just a "manifestation of headache" and nothing else going on. I cannot bear to think that he will have to go through this .. even when he is in shadows the pain in his arm has been at a level where he can't really function. He is so strong in his resolve not to let this beast get him down, but that resolve is very thin right now. Thank you all for your advice and wishes... I'm sure Dave will be on to post as soon as he can. Right now he is actually getting some much needed sleep! Annette Emond |
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Title: Re: Need help fast, I may be done fighting! Post by Prense on Sep 1st, 2003, 10:22am Ummm, did they at least do an EKG or any other cardiac exams? As for the narcs, I don't like them for an attack anyway as they still do not touch the HA. I have yet to find anything that kills my HAs, but I have not yet tried imitrex injections or O2. That seems to be the general concensus here for treating an attack as far as meds are concerned. Of course, if there are underlying cardiac issues, I wouldn't do the trex thing. Keep us posted Dave and Annette! Chris |
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Title: Re: Need help fast, I may be done fighting! Post by ave on Sep 1st, 2003, 10:48am Annette, I am so sorry for you and Dave. Have you contacted his "ordinary doctor" about the arm pain? Try, without mentioning the clusters at first, for that may lead the doc on the wrong path. Just complain bitterly about painful arm. Say you suspect heart trouble. Say anything, but don't start with headache. You MAY get through. I will think of you rteal hard. |
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Title: Re: Need help fast, I may be done fighting! Post by ClusterChuck on Sep 1st, 2003, 11:21am Annette, I am shocked and appalled at how he was treated!!! I would get back there and "kick ass and take names!" There is NO excuse for that sort of treatment! I agree with not talking about the headaches in the beginning. In my experience, if they suspect heart trouble, they RUSH to take care of you. I am VERY concerned about his arm problems!! That needs to be addressed! Take the proverbial baseball bat with you next time! Appalling treatment!! I hope you get some correct answers soon! My heart, prayers and vibes go out to the both of you! Chuck |
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Title: Re: Need help fast, I may be done fighting! Post by Mastifflvr28 on Sep 1st, 2003, 12:44pm So sorry to hear this Dave and Annette. I was wondering the same thing as Ave, Can he go to a regular doc, or his neuro to explain all this? Vibes still going up, and I'm so sorry about that nasty doc!! Mast |
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Title: Re: Need help fast, I may be done fighting! Post by Melissa on Sep 1st, 2003, 2:20pm Isn't there some sort of medical board you can call or write to at that hospital? I would definately go over that doc's head, there was no reason for that kind of mistreatment. What if Dave ended up having a heart attack, or bad clotting, etc.? That doc would have a malpractice suit slapped so fast on his ass, but why take that chance of Dave's health? I believe what goes around, comes around, and that doc is going to get his! I just hope no other unfortunate soul gets such a rotten treatment from that pissant! Sorry Annette & Dave! :-[mel |
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Title: Re: Need help fast, I may be done fighting! Post by Donna on Sep 1st, 2003, 2:31pm Get on the phone and call the Director of the Emergency Room staff or call the hospitals Case Management Director. This is unexcusable......this doc dropped the ball when he didn't do a cardiac evaluation. Did they take blood for cardiac enzymes? That's usually the first thing they do to determine if any damage has been done or is in the process of happening. I'd threaten to take it to those who oversee hospitals, and if you need a name and address, let me know and I'll find it for you. Do take an ambulance next time. The first thing they usually do is put the oxygen on. Not only that, they will first do a test for oxygen saturation to see at what level you are before administrating the 02......and they'll take his blood pressure. These things will be helpful for you too, just knowing where is he. Keep a record. If we all had this info, we could do another compilation of statistics on a large scale. You, as a patient, have very specific rights and the hospital can lose compliance points with regulating forces. Your right to proper treatment and timely help is among them. I hope you continue to look for help without waisting any time. |
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Title: Re: Need help fast, I may be done fighting! Post by Dave_Emond on Sep 1st, 2003, 3:14pm Hi It's Annette again.. I guess I should have been more specific this morning but I was suffering from exhaustion and emotional overload. The ER nurse did hook Dave up to monitors, blood pressure, leads to his heart- not a full 12 lead - 3 I think and an O2 lead. All indications were that everything was normally functioning. His O2 levels were reading normal even tho he was forgetting to breathe. He is snoozing again right now with a death grip on his left arm.. the pain in his leg seems to have subsided for now. Major attacks will start to come on again in a couple of hours and through the large portion of the night, so we will be watching him very closely. We just found out our own physician is probably not going to be here tomorrow when the clinic reopens after the holiday weekend.. apparently he is in China picking up a newly adopted baby. So we will see whoever we can and start from square one again explaining everything Dave has gone through.... AAAAAARRRRGGGHHHHHHHH!!!!!! Thank you all again, and I'm sure Dave will find a way to "whack the pee-pee" of the Dr. we saw last night. ::) |
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Title: Re: Need help fast, I may be done fighting! Post by Carla_Comiter on Sep 1st, 2003, 4:29pm Dear Annette and Dave, First of all, I will lead the pee-pee whacking committee! I'm sure I can find many willing volunteers among our Clusterhead family... I phoned my ex-husband the neurologist (formerly known as poopy-head, but that is still a different story!) I wish he had a magic cure-all diagnosis, but the most I can do is share what he said when I read him the messages from ya'll. He said that the pain spreading to Dave's leg made it less likely that it is angina. He has never heard of this opposite-side pain with CH, but would suspect it originates in the brain, and stresses the importance of getting the MRI. Your posting did not specify whether your physician is a neurologist, and he thinks it is important to see a neuro, and perhaps go to a major medical center for diagnosis and treatment. I shared with him that during my recent episode, I had chronic pain and tightness in my left neck/shoulder--my CHs are on the right. He seemed to think that this was evidence of a relationship between the CH and the opposite side body pain. By the way, my neck/shoulder pain went away when the episode ended. Sorry that I couldn't do more. But please know that I care enough to phone the ex, interrupt him and his former topless dancer blond floozie brain-damaged wife and the two kids I couldn't give him, oh, sorry again, getting carried away with old stuff. :P But if you have specific questions, I'm willing to interrupt them again. ;D Sending love and light westward to you and your family. Carla |
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Title: Re: Need help fast, I may be done fighting! Post by zikarro on Sep 1st, 2003, 8:03pm Dave and Annette, I am new to this site. Over twenty years ago my wife had a cluster episodic attack for her first time. She never got another attack in all the years since About three weeks ago the beast returned. I found this site a few days ago and we have been pouring over it ever since. Just now, seeing your post made me shudder. I agree with the replys that suggested getting to a major medical center. I dont know where you live but Im wondering if you ever considered the Cleveland Clinic Foundation. I have been employed there for 28 years and it is considered one of the best medical centers in the world. We have been ranked the best cardiac center for nine years in a row by US World Report. If you think you are having cardiac related trouble I would strongly recommend considering the Cleveland Clinic Foundation. We also have a headache clinic, which is where my wife will be headed very soon. At least check the following website for the Clinic. Again, Im not sure where you live but if I ever had to go anywhere for treatment of any kind, especially cardiac related, :(this is the place. Dont give up, Dave, we need you. http://www.clevelandclinic.org/ Yours truly, another Dave |
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Title: Re: Need help fast, I may be done fighting! Post by OneEyeBlind on Sep 2nd, 2003, 12:48am Dave, just praying for ya, cause that is all I can do. Keep us posted. We still live with the suicide of my brother in law. It never goes away. Physical pain does. Remember that. Love to ya and PFDAN's as well. Hopng things get better !!!!! |
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Title: Re: Need help fast, I may be done fighting! Post by Mahle421 on Sep 2nd, 2003, 4:11am O2 Man, O2 8-15L/min for 15 min. I'm telling you, it helps and sometimes if u fell it coming on, u can hit the O2 and minimize an attack. I have not tried the Immitrex injections but this week I will try some and let you know how that works. I try to keep results for treatment of these CH's. At this time I feel lots of water (2-4 glasses per hour) O2, and Ice across the eyes and Ice on the back of the neck and top of shoulder works great for me. (considering there are no major drugs being used. Good Luck Jason Mahle |
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Title: Re: Need help fast, I may be done fighting! Post by RevDeFord on Sep 2nd, 2003, 7:09am You are going to think I am really odd, but I have an idea that may help you. Go to one of those private, independent "doc in the box" type clinics. Most of these are little emergency rooms and they have sprung up everywhere. Those guys get paid by having customers, and they want their customers happy. Therefore, these doctors do everything they can to diagnose and fix, and refer if necessary. I was diagnosed at one of these clinics. I walked into one having a cluster, having been hit at the mall next door to the clinic. I didn't know what I was having, but had had them for years. I walked in and the doctor was retreiving a file from behind the counter. He took one look at me, and even though there were 5 or 6 other people waiting, immediately got me into a room. He diagnosed the CH, educated me on what he knew and encouraged me to see a neurologist for further evaluation. He got me some imitrex and gave me oxygen which got rid of the CH at that time. Also, having worked in a major hospital for the CEO, and also covered for the VP of Nurising and Emergency Medicine, I handled alot of complaints, mostly about the front desk of the ER. When a complaint came in, it was immediately addressed and handled. This is required to maintain the Hospital's JCAHO(Joint Commission on Accreditation of Health Care Organizations) Accreditation. Don't let this rest. See it through, or you will have the problems with the ER again. If you get no where, contact the JCAHO. They will climb up that hospitals rear with microscope. |
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Title: Re: Need help fast, I may be done fighting! Post by hopefull on Sep 2nd, 2003, 9:04am Dave please hang in there :'(....we're all pulling for you and your wife....hugs to both of you, your in my prayers |
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Title: Re: Need help fast, I may be done fighting! Post by hopefull on Sep 2nd, 2003, 9:08am Annette I know this is hard on you too, watching the one you love suffer so much...take care of yourself..our concern is for you too. Take a few deep breaths, shed a few tears, Hang in there and hold on to each other.... my heart felt concerns, Jean |
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Title: Re: Need help fast, I may be done fighting! Post by 5-string on Sep 2nd, 2003, 10:05am Dave-Annette, I don't have anything profound to say, I don't have any big connections with anyone,anywhere regarding this situation medically. The hardest time to find peace with everything is by and far the most important time. ".....and one day,when you face this beast alone,your courage intact,your eyes kind,out of your smile will bloom a flower and those who love you will behold you across 10,000 worlds. Alone again, I'll go with bent head,but knowing the immortality of love. And on the long,rough road both sun and moon will shine, lighting my way." Thich Nhat Hanh Peace and love to you both, Mark. |
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Title: Re: Need help fast, I may be done fighting! Post by Big_Dan on Sep 2nd, 2003, 10:10am ... little slow on the reply... ... but get your fucking ass to an ER pronto... and don't come out until you get some gawdamn relief... ... this talk about suicide is a bunch of horseshit... there ARE other means of reaching your goal... but taking the easy out is gunna be Hell in the long run... (my personal belief, don't wanna hear from the heckling section)... ... Calling in a devine favor, and sending you some vibes ASAP, Brother... -Big Dan |
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