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Title: Nevermind, I'm just going to vent ... Post by Dave_Emond on Oct 12th, 2003, 2:21am AAAAAARRRRRRRRRRGGGGGGGGHHHHHH !!!!!!!!!!!!! NEVER want to sleep again! Sorry Folks, you can skip this message, I just need to try to focus on something right now. Anything to tell me I'm still here! Trying hard to breath, and think. Only thing left is my mind, at least I hope so. Fell asleep this evening, or last evening at about 8:30PM to around maybe 10:30? In recliner, which has been only place I can sleep at all anymore, but now not sure if I can anymore though. Woke up like a pretzel, whole body shaking out of control, but cramped up in a fetal position. Nerves shooting throughout body, muscles all cramped. Tried to scream out for help, couldn't do much more than grunt. Keep cell phone 3 feet away as phone ringing is best alarm clock for Annette. Took a long time for me to "break" my arm free to speed dial for help. Took a long long time for Annette to stretch me out and sit me upright. Longer to stand, pain incredible. Tried to walk with a walker, couldn't. Annette used chair with wheels to get me here. Only good thing is I didn't wake to Cluster as well, if so, sure I'd be in ambulance by now. Already found out can't handle both at same time. Still can't believe I can feel so much other pain during any high level CH attacks, would have sworn my life on it just a few months back ... CH attack: Nothing else matters! Wrong. This makes no sense to me anymore, seems impossible. CH attacks and other pain? No way, no how! But yet it is happening? I'm lost! Use this chair to let blood flow to feet, they swell up like baloons, but will eventually numb most of leg and feet pain. By sitting here typing, trying to get each letter right as arms and hands shake, I'm just trying to clear my head. Will take forever it seems, have to go back and retype many words. Am afraid to ever sleep again, each time I wake, it's been worse. So, what happens next time? Will I be paralized? Will CH attack accompany this? I won't be able to take it, but also wouldn't be able to do anything about it! Been tapering off 120mg of Prednisone for awhile now, down to 50mg, knew Prednisone was masking pain, but didn't realize how much, and still must keep tapering off. Side effects of Prednisone were pretty bad and we pushed the limits, many still exist, hope they go away. But, as I taper, the more the pain. Can't win! Wish I had enough energy to scream. Going to see new Neurologist Monday afternoon, tell me I'm going to die, I don't care, just tell me something! Well, I care I guess, only for Annette, my family and you guys. If I were alone though ... I'm rambling on I know, no need to finish reading or reply, just trying to hang on. I know this sleep deprivation is not good for me, I tend to dream while still awake and see things that are not there for brief moments. Not good. But, do I exchange that for how I might wake next time? Will I be a vegatable either way? Annette has always said I'm an "obssessive" competitor, and she is probably right, I hate for anything to beat me, but am losing this one and getting mad and frustrated. Using everything left to keep from getting "pinned" by this crap. Will fight back with anything (which I'm trying to do now taking up space here to ramble on). Looks like it's taken me over 2 hours to write this much. Sorry I'm carrying on, guess I'll go try some solitaire or something, and quit whinning here. Thanks for letting me have an outlet, when my head clears up, maybe I can come back and reply to other messages back in a more positive and supportive manner, instead of ranting on about my fears, mental state and pain. Will try to think of positive things, just a little scared right now and need to talk. Thanks for putting up with this ranting. Dave |
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Title: Re: Nevermind, I'm just going to vent ... Post by ShariRae on Oct 12th, 2003, 8:00am aww Dave, it's not whining...whatever is happening to you is terribly frightening as well as frustrating..Just know we are always here to listen & to try & offer as much support as we can.Keep fightin this fight until you get the answers you need to treat it. Huggs & Healing prayers Shari |
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Title: Re: Nevermind, I'm just going to vent ... Post by brain_cramps on Oct 12th, 2003, 8:31am Vent away Dave! That's what we're here for. and NO... its not whining! Hoping and praying for some PF time for you, grant |
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Title: Re: Nevermind, I'm just going to vent ... Post by taraann on Oct 12th, 2003, 9:29am Yup NOT whining at all. SO sorry to keep hearing about all your pain Dave, You hang in there and Keep on pushing and VENT as often as you want/need to! |
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Title: Re: Nevermind, I'm just going to vent ... Post by nancyc on Oct 12th, 2003, 10:53am Keep venting all you need to, bro...if your new neuro doesnt help you...gonna get you to SC to see mine...he is really sharp ...he is from Nigeria and knows his stuff..you are in my thoughts and prayers...smiles,nancyc |
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Title: Re: Nevermind, I'm just going to vent ... Post by Lori on Oct 12th, 2003, 2:23pm I am really sorry that you are suffering so much. :( I know there isn't much I can say that will really help ease your pain, but I'm glad you have this place to come and vent. I hope that has helped you some with all that you are dealing with. I hope your appt goes well for you and the doctor is able to find something that will help you. Let us know how you are, ok? |
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Title: Re: Nevermind, I'm just going to vent ... Post by cathy on Oct 12th, 2003, 3:19pm :( Dave if you didn't start threads like this i'd have to chat to Nancy all day, so thanks for the venting...... ;D Sorry your having such a bad time though...wish there was something I could do to make things better for you, hope these PF vibes and good health vibes help! Good luck at the neurologist...let us know how you get on... Cathy :) |
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Title: Re: Nevermind, I'm just going to vent ... Post by Chia on Oct 12th, 2003, 3:32pm I really truely believe that there is a reason for everything.....except PAIN. I don't know why Pain has to be a part of your life or anyone elses for that matter...Hang in there....sending you PF vibes and prayers to go along with it...Chia :-/ |
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Title: Re: Nevermind, I'm just going to vent ... Post by Pinkfloyd on Oct 13th, 2003, 1:15am Dave, I'm sorry and I haven't been following all your posts as to what all your symptoms are (although I know many, I think) or what your Doc has looked at in trying to figure out the problem. I know you know the problems that such a high dose of prednisone can cause. I don't know how long you were on such a high dose or how quickly you've been tapering off. Others also may have mentioned this but...sorry if this isn't worth taking the time to read...I know you're in pain.. But...increased pain levels and convulsions can be signs of problems with prednisone. Just because you are coming off of it does not mean that this tapering is not the problem. Have you been given an ACTH injection? It will stimulate adrenocortical activity that the prednisone will have most certainly stopped if you were on that high dose very long. The absolute WORST clusters I ever encountered were while I was tapering off prednisone and I wasn't any where near the levels you were at. I was only at about 30mg for a month. Prednisone can and does sometimes play havoc with a person's neurological system. I noticed in one of your posts that you felt that you generally encountered the worst of side effects with many of the medications you've tried. ( I hope I understood, and recalled your words correctly). If this is the case, and you are experiencing the worst side effects, of a dose that is 100% higher than the top recommended dose of 60mg., this could be related to your current problems. Just a thought....Hope you're feeling better. BobW |
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Title: Re: Nevermind, I'm just going to vent ... Post by juvy on Oct 13th, 2003, 3:59am Dave, Vent away. I hope things are better today. Please keep us updated on how you are doing. Feel free to rant, vent, yell, scream, kick. We all want to at some time or another during our cycles. Pain free vibes headed your way. ~juvy |
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Title: Re: Nevermind, I'm just going to vent ... Post by Dave_Emond on Oct 13th, 2003, 5:13am Hi Gang, Thanks for the support, I appreciate it! Wish I had better news tonight, but things are rapidly getting worse. Whole right leg is pretty much useless now. Tried to sleep some, but within 20 minutes or so, these seizure like attacks hit again. Afraid if I go into a sound sleep, I may wake up paralyzed and not be able to do anything about it or let anyone know I'm still in here somewhere. New symptons hit again tonight while I was awake. Body just went out of my control. Head jerking, arms jumping, legs (especially right) twitching, chest cramping, etc. Annette said my toes curled upward during this, instead of down like in normal foot cramps ... weird? I don't know, all I can do is use CH coping methods and try to breath. Yes, Pink, you were right about my having problems with side effects of meds. Many from the Prednisone. I've been keeping a daily log since the first time I had to go to the local clinic for emergency like symptoms. This was after the 1st ER incident. Here's how the meds were given: Sept 2 - 7: Given some type of shot, don't know what it was, but didn't do anything I know of. Put on Medrol Dose Pack (started at 6 pills taper down one each day) plus Celebrex and Skelaxin. Sept 7 - 20: Put on 80mg Prednisone, dropped Celbrex & Skelaxin somewhere in that time frame. Sept 20: Having more severe pain and tremors, Doctor raised Pred to 120mg. Sept 22: Added Amitripiline 25mg's per day. Sept 25: Started tapering Pred slowly. Sept 29: Clinic to Ambulance, quit breathing, fire department paramedic intercepts ambulance, revives me, continue on to ER, 5 hours to stablize. Sent home?? Oct 13: Pred now down to 20 mg's continuing taper. Still taking 25mg Amitrip, but don't think it's doing anything at all. Still feeling side effects of Pred. Can't get to kitchen and back to look at tapering schedule, but I think it'll be at least another 2 weeks or so? Have no clue yet what this new Neurologist might prescribe for pain (allergic to codiene), but I need something fast as pain worsens by the hour and spreading quickly. Pain is chronic now, with extemeley painful "attacks" hitting randomly. Have appointment at 1:30 today, wondering how I'll get to car, get in, and ride 30 miles to Doc. This chair is only one I can sit on for long. Had to add pillow as even my butt is in pain. :-[ I'm thinking the Pred side effects will go away eventually, certainly the pain masking is going away! Even while on 120mgs, I kept telling these doctors I could still feel this "whatever" was still spreading, the Pred was only covering the pain. (Also still need Prilosec for stomach acids fom Pred). On a good note, although Chronic with CH, I still have episodic cycles in Jan through March & September. Was having around 20 attacks per day/night for last month, but am now back down to my normal average of about 8 CH attacks per day/night. If the 2 attacks hit at same time (I don't think they're related) I try to fight, but can only hold on so long, then just lose it and spasm until it ends. Ready to die at those times. In the meantime, I try to think positive as best I can. Tend to get angry and frustrated at times, but work my way out of it. Not going down without a fight! Don't know why they haven't put me in the hospital yet, where they could let me sleep and monitor what's going on? May have found something by now! Will probably end up there anyway as I may not be able to move at all in the coming days at the rate its going now. What to do ... what to do? I don't know ......... Just hope I guess! Think I'll try to make it to the bedroom, lie down by my precious wife and take my chances. Feel like I may not have that opportunity again for some time ahead. Hope I'll be back with better news, thanks for being here all! Dave |
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Title: Re: Nevermind, I'm just going to vent ... Post by TxBasslady on Oct 13th, 2003, 8:24am :) Hi Dave Sure hope the doc does something today to try and find out what the problem is. I am confused as to why the doc hasn't hospitalized you yet. ??? Wonder if Bob has a point about it being the prednisone. I have heard that it can do some really weird things to the body. Please keep us informed as to what the doc says or does today. ;) Sending lotz of pf vibes to ya, sweetie 8) Jean |
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Title: Re: Nevermind, I'm just going to vent ... Post by AlienSpaceBabe on Oct 13th, 2003, 10:36am You'll be in my thoughts.... pf vibes and doc-finds-the-problem vibes coming to you |
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Title: Re: Nevermind, I'm just going to vent ... Post by Dave_Emond on Oct 13th, 2003, 11:23am Wow, did I almost post some gibberish! Head now clearing up a bit. Made it through night laying on my side in bed. Of course, wives as they are, immediately swooped over and wrapped around me ... I almost hit the ceiling! Scared her awake though, so we're even :) Love her! Slept about 2 hours. Woke to lower level CH attack, so wasn't thinking and swung legs off bed ... Ow! Both legs screaming in pain now, or is that me? Tried to stand ... long time ... finally, used walker for about 15 feet, but couldn't stay up. Annette got chair with wheels and pushed me in here. She is now over at the American Leigion, they are going to loan us a wheelchair. I wish it were the Prednisone, some of it might be. But, this all started back on August 26th, with just some nerve pain in upper left shoulder. Spread through whole left side before I went to ER on the 31st, and again that night of September 1st. Took no meds until September 2nd. At this time, was only feeling shooting random nerve pains. Medrol, didn't help much, pain kept spreading. Started on 80 mg of Pred on the 7th, helped a lot for a while, but knew it was still spreading, enough to where pain was getting to be too much. Went to 120 mg's on the 20th. Helped a lot, but could still feel spreading. Side effects of Pred (am guessing Pred): 1. Had to eat, couldn't stop once going. Took a long time and serious bloating to monitor eating. 2. Gained over 15 lbs. in first couple weeks. Eating? Probably to some degree, but much swelling on face, stomach, ankles and feet. 3. Stomach acids burning, stomach and esophagus. Prilosec controls this now. 4. Rash on chest, shoulders and back. (Still there.) 5. Maybe pulse elevated from Pred? 6. Difficulty breathing ? 7. Dizziness and eyes rolling, hard to think clearly at times? 8. Insomnia Think those are all due to Pred. Muscle weakness probably result of tension from pain, lack of use, and "spasm attacks." As I taper, feel like face is melting, look like Basset Hound :-/ Guess only time will tell, but now that both legs are gone and think it will continue through rest of body, going to need pain relief of some type. Will see what Neurologist says today. Hey, I'll take any suggestions on what you all may be thinking, everything is worth looking into. I really appreciate all the support you all have shown me. Thanks, Dave |
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Title: Re: Nevermind, I'm just going to vent ... Post by Surf on Oct 13th, 2003, 1:30pm Dave; You rant and rave all you wish, I'll listen. Sorry your havin such a bad. I am here thinkin of you and will be sending my PF vibes your way along with some prayers. Don't you quit. Hang in their buddy...Surf |
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Title: Re: Nevermind, I'm just going to vent ... Post by maria9 on Oct 13th, 2003, 2:45pm Dave, Sorry to hear about your continuing health problems. Hang in there. Just curious, have the doctors ruled out Guillain-Barre Syndrome and Multiple Sclerosis? Maria |
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Title: Re: Nevermind, I'm just going to vent ... Post by Surf on Oct 13th, 2003, 3:49pm Words... When things go wrong as they sometimes will. When the road you're trudging seems all up hill. When the funds are low and the debts are high. And you want to smile, but you have to sigh. When care is pressing you down a bit. Rest if you must, but don't you quit. Life is queer with it's twist and turns. As everyone of us sometimes learns. And many a failure turns about. When he might have won had he stuck it out: Don't give up though the pace seems slow- You may suceed with another blow. Success is failure turned inside out- The silver tint of the clouds of doubt And you never can tell how close you are. It may be near when it seems so far: So stick to the fightwhen you're hardest hit- It's when things seem worst that you must not quit. -Author unknown take care now, all of you...Surf |
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Title: Re: Nevermind, I'm just going to vent ... Post by taraann on Oct 14th, 2003, 2:40pm on 10/13/03 at 05:13:26, Dave_Emond wrote:
How did your appt go? |
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Title: Re: Nevermind, I'm just going to vent ... Post by oringkid on Oct 14th, 2003, 3:20pm Dave, so sorry to hear of your new and frightening troubles (I've been offline for a while) Have the Doctors checked for ALS? (Lou Gehrigs Disease) or RSD (complex regional pain syndrome) Specifically, post traumatic spreading neuralgia or as Maria9 suggested Guillain-Barre Syndrome? Just some suggestions. Please keep us updated and fight hard to keep moving. Sounds similar to something my daughter had when she was around 3... twice! The first time she lost the ability to walk and feed herself and became "locked". Many months of physical therapy ensued. The second time I kept her moving even though it was difficult and her recovery was MUCH quicker. The Doctors NEVER found out what it was... they tended to think Guillain-Barre, but some things did not fit. Luckily, she recovered fully both times... but it was absolutely terrifying for me. Since she was so young and also mentally retarded she was not able to tell me how she felt or anything, so I can't say that what you are experiencing is the same thing. She, luckily did not have any lung paralyzation, which sounds like what you may have had. It almost sounds like an extremely rapid case of MS. Just keep on fighting. Fight like you've never fought before. Keep moving. And keep on the doctors. Remember to keep us informed. That will help you keep moving too. I'm sending you strength and kinetic energy! Sherry |
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