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| Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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09-06-2009, 02:09 AM
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I having some problems lately and I may admit that I am a little embarrassed to mention this things… I have been having these crazy things happening to my head… I will be fine one second and two seconds later. I am in this tunnel vision.. It has been going on for several months now… Its kinda like I am high and everything is going really slow but I am completely conscious .. Now here comes the embarrassing part..
 Please don’t laugh at me… When I wake up from one while I was sleeping I realized I have peed myself... .. and I don’t understand what is going on because I will wake up in this tunnel vision type thing and then two seconds later snap out of it… And be fine.. but I am very tierd afterwards and I will go lay down and sleep they are very exhausting to me… I don’t know if it’s a seizure or what.. and I am to embarrassed to bring it up to my doctor.I am also afraid I am going to slip in to some kind of coma  … Last November I slipped into a coma shortly after I was told to stop taking my meds and I had to be completely off them or they would not do my other rib rescission a few days later I ended up in the ER for 3 and half weeks with no recollections of what happened for the 2 months before I wound up in the ICU… But during the time of the coma I can remember people coming into say there last goodbyes (so hard!!) , what they were wearing , and I started speaking German which I haven’t done in years… Every time I have one of those seizures I am afraid I am going to wind up in the ICU u again and die… I come close to dying 3 times… My EEGs said I was brain dead…. I am glad they never told my mother that because I told her I never wanted to be laying there in hospital bed the rest of my life and to pull the plug…  DOES ANYONE HAVE ANY ADVICE OR SIMLIAR SITUATIONS…??? I am so scared to death… And my family chalks it up to my medications and that I am taking to much at least in relationship to the tunnel visions and high feeling… As fair as the seizures they have 2 thoughts either it was a major reacation to the withdrawal symptoms and Lidocane overdose.. even though I had nothing in my system and I wasn’t even using the patches at the time I ended up in the ICU… Also does anyone have any thoughts on what extended relief pain meds work best for u… Please let me know right now they have me on avanzia and it really really really is not working…  I am crying on a daily basis every since the change… Also what are u taking for sleeping meds... I am going on 4 to 5 day benders with no sleep at all it gets so exhausting. Does any one have any ideas for sleeping meds?   Also i had great results or my SCS... Well not great but good... I was havin alot of trouble during the day with nausea but during the night i got good qualitie sleep... Which i havent had in years.. So that is postive... I could really use advice about: Tunnel vision possible seizures Coma Sleeping meds Extended Relife Meds
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Jacquelina . |
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09-06-2009, 12:35 PM
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Have they reevaluated you since these things started happening?
If not maybe you need to see another dr for a fresh evaluation. For a new view of all symptoms and not blamed on to the dx's you have already.
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Search NT - . |
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09-06-2009, 06:45 PM
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In Remembrance
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Jacquelina:
You've got SO much going on there, that I first off, Agree with JO*mar! You've got to tell this all to your doctor, as a matter of fact, the easiest way to do that, (for me) would be to simply print out what you just wrote. I often keep a list of notes for my Doc, and then, all I need to do is print it before I go. So, I have it, wether I'm having a bad day or not. 5 Days w/ no sleep will mess anyone up! I've gone 4 days awake, and four days asleep. My doctor marked me with post traumatic epilepsy. Whatever that is. Please, get to your doctor! Do you have a good Neuro, I forget, honestly. It sure sounds like you need some tests. It seems like you're falling asleep inappropriately. Because you're not sleeping when you should. That's just my guess, but you need a real good neurologist to manage this for you! Keep us posted.   Pete |
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| "Thanks for this!" says: | wildberry2277 (09-08-2009) |
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09-06-2009, 07:45 PM
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Senior Member
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I'm so sorry of your complications you have been having. I can't give you advice, but i can tell you my meds and experience. I've had RSD 14 years following surgery. I'm now generalized or full body. About 4 years ago or so, I woke up and was unstable- walking into the wall and door.got to the bathroom but passed out. I knew I was going out-hit my head on the tile floor, saw a bright white light. I had lost my bladder and colon. I couldn't get up, so crawled on my stomach to the door, and started banging on it. My husband had been upstairs at his desk. He opened the door and I asked him to call 911-had to ask 3-4 times. He was in shock. I was going in and out.Don't remember going to hospital. One paramedic told my husband he couldn't get a pulse, and thought I was dead. Got pulse on the other side,pressure was 60/40. Was in semi-iceu4 days. The hospital I asked to go to was the one RSDSA had their annual conference this spring. Had lots of tests $16K and total bill was $35K A RSD friend here locally has had 4 of them. My husband said I was out an hour to hour and half. My Dr. is a neurologist, phychiatrist, and pharmachologist. He said since I've had one, it's more likely I will have more. RSD is an autonomic disorder, meaning our involuntary organs are involved. It's why we have circulation problems, Hot and cold spells, high blood pressure due to the sympathetic nervous system and low blood pressure due to the para sympathetic nervous system. That's why I passed out- the big drop in blood pressure. I take vicodin for pain, lorazepam for anti-anxiety- which helps calm the sympathetic nervous system. Cymbalta helps with nerve pain-anti-depressant. Take 2 high blood pressure pills. Have my own unit to keep track of my pressure. Ambien Cr. quit working for me and my Dr. was just finishing a 200 person trial study for low dose Seroquel CR 300 mg. Had to stay in bed for 3 days during the initial starting of the med. I've been on it 2 months now and get 8-9 hrs of straight restorative sleep. It's amazing. Because I'm getting such good restoraive sleep, my pain level has dropped. I got the flu and that really set me back. My Dr. represents a couple pharmaceutical companies and does these studies.The Seroquel is acually given in high doses for bipolar or schizophrenia, which I don't have, but the pharmaceutical company wante to try and see if the drug in low dose would be effective for anxiety and during the study they found it was really good for sleeping also. The study is being written up now, then published, I'll let you know when it gets published, but I can tell you the sleep benefits are outstanding. My Dr. switched me from two double dosed anti-depressants to 120 mg. Cymbalta and that made a huge difference. I also have fibromyalgia and Cymbalta works well with fibro. I have had some severe crying spells, but they are not often or days in a row. Are you seeing a phychiatrist? I've been seeing mine for 5 years, and that has helped me immensely. I would like to encourage you either to tell your Dr. about the coma, or find a new neurologist. If you don't have a living will, you need one. The EEG test needs to be adressed should it happen again. Hospitals carry the forms and you can fill it out now rather than at a time of crisis My episode was 3-4 years ago and I haven't had one since. But I did have the bladder accident 2 or 3 times. The bladder and colon are part of the involuntary organs that are affected by the sympathetic nervous system. I told my Dr. about them, but he didn't give me any meds. They just stopped. Please don't be embarrassed. If you like, your welcome to Private Message me. Take care, loretta |
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| "Thanks for this!" says: | AintSoBad (09-06-2009), wildberry2277 (09-08-2009) |
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09-06-2009, 08:53 PM
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I have heard that bladder control, or loss thereof, is something that RSDers deal with sometimes. As the others said, don't be embarrassed, but DO talk to your doctor or find one that will listen and help you.
I am unable to take alot of prescription pain meds, but one that is working for me is Meloxicam. Don't know if that helps you or not. As far as sleep, I haven't figured that one out yet either. I usually take 3-4 ibuprofens before bed to help with pain so I can sleep. I try not to take the prescription meds, but should prob trust them more. Not sure. Anywho, good luck to you; will be praying for you. Suz
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| "Thanks for this!" says: | wildberry2277 (09-08-2009) |
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09-06-2009, 09:00 PM
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In Remembrance
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Please,
Anyone be ultra careful with Seroquel. Loretta, We've spoke about this, and I am not arguing with you, as you know. I so Very Much Agree with what you're saying however! I just want to warn about the Seroquel-----it's side effects! I have an RSD friend, who has had the sleep test, and got on CPap. But, this person had been put on Seroquel earlier. Gained MUCHO pounds! Like, a Lot! Then, this person would wake during the night, and start acting out. Raiding the refrigerator, then starting "housework", and destroying the "fabric of the family"! I've not even "heard" of this sort of behavior from street drugs! My doc gave me a sample of Seroquel, quite a few years ago. I took half of a 25 mg. It ZONKED me out for two days! Now, my friend was on some Hundreds of Mg. I don't recall. But, I stayed with this person and spouse for a couple weeks last year, around the holidays, and went to the Neuro with. He said, STOP THE SEROQUEL! STOP IT! Oh, was also on the other MONSTER DRUG, PROVIGAL! STOP THAT TOO! Think about that. It's Downs to go to bed, and Ups to clear your head... It's just not right. I've postulated (FOR MYSELF) a couple of decades ago, I want the SMALLEST DOSE of anything, that will do it's job, for me! Period! And, doctors can be very liberal with the dosages they give you! Always, Always, ask about titrating UP, to see where you get the desired effect! And, stop there! (Then, discuss that point with your Doctor, some meds, You need to take full dose. Some, you don't). So, don't take this on your own, speak with your Doc! Or, all you're doing over and above that, is working your liver and kidneys, with meds that may not need the "High Dose"! Seroquel, and it's sibling drugs, are NOT ASPIRIN! They're HDuty meds, and their makers, are hiring doctors, to do studies. (This is HUGE Money for the docs). So, take it from there. The cure, is NOT in a PILL! It's in a complete rethinking of your lifestyle! Exercise! Diet/ Nutrition Mental health. (Have a psychiatrist who specializes in chronic pain, in your "Line up". Refer there, when you get "out of sorts". And, finally and definitely lastly, your medications. Be sure you know what they are, how they interact, and take the lowest dose that works for you! Be well, ya'll.... Pete asb PS After writing this, I Googled "Rolling Stone Zyprexa" Which is, an article about Zyprexa, another "Aytipcal" med for the same illness' as Seroquel. I invite you all to do this. If you're using, or thinking of using any of these meds, your eyes will pop open! Even with all the "losing lawsuits" against them, the drug companies, keep producing, and paying doctors to do "clinical trials". Why? Because of simple math. They make more, MUCH MORE, selling these drugs, than they Lose, in the lawsuits! They're actually making friends with the lawyers! Think Hard about this. Last edited by AintSoBad; 09-06-2009 at 09:29 PM. |
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| "Thanks for this!" says: | wildberry2277 (09-08-2009) |
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09-08-2009, 12:37 AM
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This sounds like an absence seizure. I'm putting some links below and I urge you to see your doctor right away and see what, if anything, can be done.
Absence Seizure Atypical Abence Seizures Simple Partial Seizures Complex Partial Seondarily Generalized That's start for you to see how close they are to what you're experiencing. I recently wrote an article on types of seizures so that was the first thing that popped into my head when you described what you feel. Hugs, Karen
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Laugh until you cry, don't cry until you laugh. Living, loving and laughing with RSD for 14 years and counting. |
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| "Thanks for this!" says: | wildberry2277 (09-08-2009) |
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09-08-2009, 01:53 AM
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Quote:
What you are going through is not familiar to me, but the experiences you have been having sound both scary and interesting. Once you become used to them perhaps they will not be so scary in and of themselves, but the part about Coma does sound extremely scary. As Brokenfriend is well able to tell you, God watches over us, and if we believe on Christ, there is nothing to be afraid of, even in dying. As for going 4-5 days without sleeping, this is nothing new to me. I do become delusional after 7-9 days without sleep. I now sleep well about every other night, with the use of Clonazepam and Lunesta 3 mg. A word of advice re Lunesta: if you think it is not working at all, trying NOT taking it with or after meals. To me, this means, if I eat, wait a couple of hours before taking it [at least] or take it 30 mins to an hr before eating supper. Darvocet works for me as extended relief of pain, but my pain is due to spondylolesthesis [one vertebrae (I think it's vertebrae) pushed up over another and needing surgery]. How often do you experience the tunnel vision phenomena? Oh, like one of the others who responded to you herein, I, too, had an awful experience with Seroquel, even at low dosage: overly sedated and unable to function. However, as also mentioned in one response, people apparently respond differently to this medication. Please PM me if you would like. I would like to hear more about your progress. Caring About You - billie |
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| "Thanks for this!" says: | wildberry2277 (09-08-2009) |
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09-08-2009, 07:07 AM
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#9 | ||
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Thank u all for responding i cant tell u how important it is to me to have some support right now… Very grateful for all of u… I guess I am just having a hard time dealing bc I really just don’t want one more health problem… I haven’t had a recent experience… its been a month or so… But for awhile it was every other day…. I take seroquel when I need it for anxiety… but I cant recall if I took it on those days or not… I think u all know how it feels when u add one more problem to the list…
I am very scared of going back into a coma as explained before… I was going through serious withdrawals… At one point I was on almost 60 pills a day or at least at the time I was so… Coming off of them I slipped into a coma… and I would come in and out screaming in pain…. And they wouldn’t give me anything for it…. Screaming and crying and screaming… and nothing was done until my mom Told them that they better do something… then they gave me haldiaule bc I was in so much pain… So I don’t really know what happened there but I lost the 2 months prior… and being awake for the whole thing…. Was so scary.. I mean known what was going on… and people coming in 2 by 2 to say there last goodbyes.. UGH…. Yeah I am sick of the know sleeping thing.. way sick of it lol… I will call my PM on wed… the thing is that I am taking several drugs that help seizures so that is why I am unsure that is what is going on… If that made sense… Thank u again for caring and helping me through this very difficult timeHugs an painfree days ahead
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Jacquelina . |
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Confusion and a little scared... *a little long sorry*
Thank U Everyone!!!!!
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