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Originally Posted by wildberry2277
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 |
Hi Wildberry,
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