mjan

Well this topic usually brings on a lot of discussion. And the very word PSYCHO-SOMATIC is usually construed as all in our heads talk. Its not that we are FAKING it.. or psycho. It means the BODY creates physical symptoms (somatic) by our thought patterns. or traumas (our PSYCHE) So.. maybe we ARE what we think!! Our thoughts..beliefs..anguish..anything negative can ALTER our chemistry down to the cellular level. Its unconscious so NOT our faults as we are not aware. Month after month.. year after year of this negative unconscious thought pattern culmatively creates DIS-EASE.. or DIS-ORDER Next.. bad experiences.. or trauma..including bad chemicals we eat.. drink..or breathe.. adds to the genetic predisposition.. that long enough.. bad enough ...leads to diseases...including mental diseases. So in other words.. unconsciously our thoughts create balance or imbalance. NOW for healing it can work as well. THINK POSITIVELY.. with a good attitude..many can improve if not get well. But I contend it depends on how long we've had dis-ease symptoms. Improvement with any symptoms would be welcomed.. wouldn't it? So.. yes our minds are VERY POWERFUL.. and can change the negative to the positive.Does not mean its a CURE..but we never really know till we try. But in my case.. I am sooo OLD..and have had DIS-EASE for so long.. I am hoping to learn from these experiences..and improve.. the BEST I can. Ok.. just my point of view. Jan

AAAAHHHH... the medical field. You DO know that MD=medical deity?? ANyway.. yes MDs can be under or overly aggressive..or dismiss you as we all may know. But they hate NOT KNOWING !! They want some test to tell them YES YOU ARE CORRECT!! I always liked anyone who says, "I don't know"..but helps you find out. Have these 2 docs communicated with each other?? If if were me...I would go to my guru of a nutritionist. He specializes in this kind of eval that uses your Autonomic response to indicate or guide him to where you may be toxic..deficient..and builds up your systems..and WHALLA... no more DX or symptoms. His eval is so specialized and amazing that 2 neuros and their PA saw the difference and tell me to return to him when I have a flare. Now seeing him does not necessarily CURE me.. and his nutritional treatment is looking at allergins in my diet...like WHOLE WHEAT and SOY.. thought to be good foods. His nutiritional program is developed and organically grown HERE on a farm near by. Because its whole foods ground into tablet or capsule form it does NOT interfere with other meds. He also tests the meds to see what damage they can be doing and gives you something to counteract that damage while you MUST take them. He cannot and will not diagnose..or stop treatment..but can correct a lot of unhealthy problems. Perhaps you need a 3rd opinion. Do you like and trust your PCP? Mine is awesome..my last 3 were..all women who dont stop until they know. Best to you...I hear ya with the NO MORE DOCS and appts. ..not to mention the co pays for ALL the tests etc. Jan

Again..depends on WHO you talk to. When my husband had them..yes you could say he was in the psychosis part and it scared his dad. He tought he knew EVERY one..EVERYTHING was familiar. BUT.. a psychologist we were seeing (for aftermath of his brain trauma) said animals get REALITY 3 seconds before we.humans do. My husband was getting the reality 3 seconds before WE do..then 3 seconds later feels as if it was all so famliar. I thought he could use that to his advantage and not be frightened by it. He was in sales..he could look at a potential customer and know exactly what they were looking for. It REALLY helped his sales..customers were really impressed as he just knew what they could afford or not etc. BUT the neuro RN said he could be having more memory damage with dejavu seizures. I used to be on an epilepsy forum and yes people with seizures can get these type. They can be disturbing until you find out what it is. My husband had a medication change and they went away. Again our therapist and I thought they were ok..unless they upset my husband. Good luck finding out. Jan

Well all I can add is that when my husband had them..( he had seizures AND brain trauma from a major seizure)..we did not think they were that serious but the neuro's RN said they can do damage if not treated with meds. I hope you'll get an answer. He got on new meds and they went away. Let us know Jan

Yes I have heard of this. My husband, who had many kinds of seizues had them. Of course if you are spiritual..or in tune..they can be memories..but since you meantioned a headache afterwards.. I am afraid to say they MAY be seizures. A neuro who specializes in epilepsy would know. I am not sure if all neuros would know. Let me know how you're doing. I am concerned.. you can even PM me. ok Warmly, Jan

Actually I trust this neuro..just hopes he keeps me as I have never found any neuro who has this training in autonomic stuff. When I was being followed for MS..and mentioned to that MS neuro that I think I have an autonomic problem..he said NO. Oddly.. as I was transfering jobs and insurances and told him I probably could not see him again..I mentioned it again.. that I thought I had an Auto problem and He said you probably do.. see a cardiologist. I could tell he had no clue. BUT one of the Rhumies did..wrote the neuro and NO ONE read the freakin letter till I MADE them !! I believe we build a tolerance to meds..and many end up being dangerous togehter or end up with side effects as bad as what youre being treated for. I have had a terrible time finding the right hypertensive as once its mixed with another med.. I get tachy. See why I want to stay with a doc who knows about auto problems?? Then because my auto symptoms preceed these cataplexy episodes where I can no longer remain alert..move arms legs but can HEAR.. everything !! So now I am facing a possible diagnose of NARCOLEPSY with CATAPLEXY. Hopefully the klonipin will help prevent those episodes. Thanks guys for your responses... Jan

Again.. its hard trying to be NORMAL with other NORMALS..and your body will not cooperate. I used to get an annual intermittent FMLA..so the days I would be off would not be an occurance which would get me fired. So I do not know if it pay to get another at my new job. I was thinking of reducing my work days to 32 hours a week instead of 40. I am just draggin. I did take off 3 weeks as I could hardly walk/work.. my head would drop from fatigue..my legs did not work. I saw this amazing nutritionist who detoxed me from toxins and built up my systems/brain. It was amazing and it was not your typical supplements but WHOLE FOODS grown organically and ground into tablet form so it did not interfere with meds. In a relatively short time my fatigue went away..my cog fog improved.. and my balance has been steady ever since. Its not your typical nutritionist..but its amazing how clogged up our livers and brains are to the point of inflammation causing or excacerbating our symptoms. Take care and may your be blessed with good times with your family..do they know how seriously ill you get? Warmly Jan

OK.. had the referral.. the auto nomic testing.. some things positive.. some mild.. Positive TT..but not too bad.. but I DO NOT SWEAT hardly at all. OK..then gthis neuro sends me back to my PCP to handle the RX klonipin. My PCP is great.. after all she referred me to this autonomic specialist cuz HER MOTHER has the auto symptoms too..and he helped. But I felt he dismissed me.. just having his RN call me to take more SALT (but I have high BP) and fluids. I DO NOT SWEAT.. or hardly sweat so I am not to be in the sun or heat. I am senstive to meds. I have dry eyes.. mouth and ears..auto or Sjogrens? I thought he would follow me. Then I remembered I told him that he and his hosp clinic are in another tier of my insurance which costs me more. I would follow with him as he knows what is wrong with me..and no other neuro did. (they thought I had MS.) MY PCP is going to ask him to follow me. AND I am having a daytime sleep study MSLT or whatever its called.. to DX the narcolepsy/cataplexy. BUT.. the auto neuro said he was not sure I could tolerate the Klonipin with my beta blocker.. yet.. he's the one recommending that drug? I am now taking less of a beta blocker and as a result my usually high BP has been good. I do not get Low BP. I dont think I have the typical POTS.. as I do not usually get higher HR/BP when standing. I get the auto symptoms.. higher HR/BP when sitting still...then if its not under control it leads to this unresponsive state where I cannot move but can HEAR. I am falling apart.. very fatigued.. now sleepy.. with DAYTIME apnea...along with night apnea. So...what will Klonipin do for me? Make me more tired? Anyone have help with klonipin?? Jan

Julie I know what you mean about vision problems and driving at night. The group meets the first Wednesday of the month I guess from 6-8pm. In summer it stays light until 8pm. On the odd months of the year they host a speaker. Its in the Community Conference Rm #2 8700 Watertown Plank Rd which is NOT in Froedtert hosp but on Watertown plank rd. PM me I 'll give you the names and numbers. I too have Sjogren symptoms which they now are just thinking its more of the autonomic part so I no longer take the RX Plaquenil or Methotrexate..do you ?? You can PM me and at least communicate via emal if you like..let me know k? Jan

ME ME ME !!! I took their flyer but then I was not sure at the time what the heck my DX is..and I work until 7pm on Wed..so I didnt know if I would even go...why? I dont know yet where I belong. But..today saw my PCP and read my report and I do have some kind of autonomic problem. So you are not going in April??? We could MEET sometime. I would have to change my work hours for that day. Let me know Jan

So.. Suze...should WE all go with you to see alll those mean MDs at the ERs you went to who overmedicated you..and did not believe YOU and now have them EAT CROW????? heeheheee..

So...does he know that you had been slowly poisoned over the years from you environment? ALL docs need to know this..they may not know what to do..but it would be a missing piece in the puzzle. In MY opinion anyway. YOU should be on MYSTERY DIAGNOSE..show..honestly !! Let them pay for all of you to be tested and on the show. After all your husband had neuro symptoms too. Is this doc a local neuro then?? Jan

AHA.. the ear thing. Is it the inner ear that swells and nearly closes shuts? AND it presses on all the nerves on side of face?? I get that..due to lack of secretions/wax..It got so bad for so long they had to place a STiNT inside the ear canal..sothe ear drops could work. I got cysts in my ears when I was young. They never can SEE inflammation so they dont think its an ear infection..send me to the ear doc..and his tools can get INSIDE DEEPER..and WHALLA...SEE the infection. ONe guy just placed this antibiotic power inside my ear after gentling suctioning out the infection/pus. Amazing stuff. I am NEVER to put anything in my ears.. and looked at the non infected ear and was sure he would not see much or any wax..sure enough he was right. FEEL for you...i had one for 10 months straight until I demanded to see the ear doc. Good luck..so sorry you have been so sick. DANG!! Have you applied for SSI/SSDI?? Warmly, Jan

So...what's next for you? And how the heck are you feeling phsycially these days?? Warmly Jan

MD = MEDICAL DEITY... NOW MEANS...MIRACLE DAY !!!!! And.. he told you to go on the internet??? WOW!! You have been validated..finally !!!! Warmly, Jan

OK..maybe its a good thing to do the 8 hours only..for some..but not others with co-disorders!! I have had a sleep disorder..looking for narcolepsy with cataplexy. I have apnea and got the nose mask only..forget what its called. It took awhile to figure how to make it fit tight enough that there was virtually NO sound. BUT it would wake me up when I turned and it started hissing. I just couldn't take that..I gave up..tried again...gave up. I think I will have to try again cuz I have DAYTIME APNEA Anyone else catch their breath cuz of apnea while awake?? Still waiting more testing for narcolepsy with cateplexy. Of course my symptoms are not the standard ones.. my episodes ALWAYS begin with autonomic symptoms..tachy..high BP/HR..then I get so weak I feel as if I am losing conscious ness..cannot move arms or legs or remain alert ...BUT.. I can HEAR... just cannot MOVE!! Hence my user name is Whats Wrong With me?? Jan

Hello my dear one. Wondered when I would hear from you again. But..when you said you can't move but hear.. I got an A-HA moment!! Its either where I learned about cataplexy..related to Narcolepsy (which you know they think I have) cuz I can HEAR but not move my body..only I dont really know it..or do..then dont. I get numb arms..face sometimes. I am still in limbo with mine..but google CATAPLEXY..and see the You tube videos of this. There is one of a woman whose husband took the video to show the doctors what his wife goes through..only she was paralyzed with numbness..only moaning..until it passes. So maybe not quite like yours. But I have thought that you do have more than 1 thing going on here. My "episodes" as I call the so called cataplexy..ALWAYS always starts out with auto nomic symptoms that lead to this. Its scary..disturbing.. and just plain annoying isn't it? Jan

Your comment of GIVING UP DOCTORS FOR LENT... I must say made me Laugh Out Loud!! Great idea!!!! I find this so confusing. I only got verbal response to my initial testing. Waiting on his report to be sent to medical records to understand more Jan

Hope your daughter and you get some relief and soon. But I agree.. as a therapist I have seen pts fall into "discontinuation syndrome" from an antidepressant being stopped. They have CRASHED so badly.. some even became suidical. So.. take it easy.. and be real careful with antidepressants..esp from one to the other. Wellbutrin can get people manicky at times. some just react differently and this is different med than the other SSRIs. Let us know.. you have our hearts and prayers Warmly Jan

Hello and welcome Cordelia~! How are you now? I hope having a better day. You will get support here. I am still learning about what I have..dont have.. as I am still being tested after many many years of complex symptoms and episodes. I am on here every day.. HUGS to you my dear!! Warmly, Jan

Hey Sweetie.. WHINE all you want ok? And never promise not to again ok? Its only the sickness talk anyway. I am therapist.. and yet I need to whine...at least a little HUGS to you ~! Jan

When my Auto neuros RN told me to make sure I take my SALT (like I already do).. and drink lots of water..I have NO idea how much.. why? ANd if its a good thing with Hyperpertension?? ANY ideas?? Jan

Thanks for your response. It was my PCPs replacement that told me he could not RX me the Clonipin. So.. I went back to the neuro's RN who said Dr. could not either.. to go back to the PCP...GEESHhh!!! I just dont understand this leg thing..execept to say Its probably the spasticity..spasms I have had in my legs and back..only.. THIS is the worse.. so painful. I dug up some old Pain killers..just to sleep.. found my old knee brace (this is my good knee).. and use my non drowsy muscle relaxant. Its just a very NEW symptom..and it happend of course when I have no doc. Urgent care WAS a consideration.. or seeing her back up PCP but I could not walk.. had no one to take me either. I could go to the ER/Urgent care near my home that has valet service. Thanks again Jan