mjan

OH dear.. HUGS to you ~!! No wonder you are so disappointed...20 docs!!! YIKES!!! Glad you came here to get encouragement and understanding. So are you going to have the Holter monitoring and TTT with this cardiologist? Hang in there.. Warmly, Jan

YES YES YESSS!!! Its what brought me to my PCP in the first place. She then was astute enough to refer me for autonomic dys eval. BUT its related to just many neurogenic problems. I get a terrible pain..urgency..frequency but NO UTI!! Last night yup.. again.. felt a burning for a quick moment..and thought..now this might be a UTI..Nope..it stopped. The pain is gripping and it does affect urgency/frequency. It lasts 2 days max..but repeats every few months it seems. So its neuro pain..its noted..I just stay close to a bathroom until this bladder pain passes. Good luck.. let me know if you learn anything else ok? Jan

So sorry for ALL you are going through. Some of this stuff is just too hard to know. So...get it checked out. At least they can rule something out. Remember tho..they are limited by their TESTS and some tests just dont show what it is you are going through. BUt trust their experience to know if its serious or not. Good luck and let us know.. Jan

YESSS!!! But I thought it was from acid relux.. Had an ultra sound of Carotids and they were fine. No wonder.. I'll run this past my doc. Jan

See? I thought it was some kind of withdrawal.. ALL meds have the potential even if not physically addicting.. its called DISCONTINUATION SYNDROME.. and its REAL. I have seen this with people who stop their SSRIs even and get so depressed they feel suicidal!!! Ultram and Tramadol CAN have serious effects when trying to quit. So SLOWLY very very..S L O W L Y...my dear RN. Or like I said an addictionologist is an expert at this stuff. Glad its improving at least and now you know Jan

What did they tell you to do? And what did they tell you its caused by? Or maybe they dont know. But I had a sleep study looking for Narcolepsy with cataplexy brought on by autonomic symptoms. I do have sleep apnea ANd daytime apnea..but not sure why. I do have lesions on the brain on or near the brainstem. But they are having another daytime study MSLT..to see if I have narcolepsy with cataplexy My study is next month. Keep me posted ok? Good luck Jan

OH YESSS!!! Hey I think you overdid it too..but its sooo disapointing and frustrating isn't it? I am sorry I did not see your post earlier. I was just feeling so bad myself and went onto this forum to vent myself. I was looking forward to a work gettogether and I woke up feeling so bad..BP/HR and symptoms all over the map. THIS was my chance to socialize with folks at work..to bond with the one giving the baby shower (for a RN co worker) as she and I were not as close. THis was my chance!! I drove my fruit tray and gifts over to an RN that lives close by....went back home to rest..and I just started to cry!! I dont have anyone else to help me. Even though I am not as bad as most here..and of course YOU..but I do know what it feels like to have something to look forward too and just cannot make it. It doesnt' start out this way..it just happens. At least its my day off. I need to rest so I can work tomorrow. Hang in there..glad you can at least enjoy the fruits of your labor!! Jan

SEE??? Withdrawal can also make POTS worse. So..just a suggestion but see a psychiatrist who is a certified ADDICTIONOLOGIST!! They have amazing ways to help people in withdrawal. The withdrawal symptoms make them USE again..so be careful.!! I know.. I worked in AODA for 20 years Good luck Jan

OH Gary I am so sorry you are struggling with all this crap. Of course its physical and I am not sure many MDs can figure this out. But I finally got past getting help and just rest..saying this will not kill me..talk myself down. I guess. BUT dont forget the ART (Autonomic Response Testing ) or NRT (Nutritional Response testing) evaluation I told you about..either from a nutritionist or chiropractor TRAINED in this kind of eval. Its amazing what they can give you for remedies..to detox and build up your system. ITs worth EVER penny.. as they can figure out things NO ONE else even knows. They get to the source. ITs a help at least. You MAY be detoxing from the Tramadol..and maybe going to fast. You may... of course I am not sure..think about it ok? BUT I will pray you find some answers..and soon..

This makes me so sad. There IS help for sciatica..no matter WHAT is causing it. I had it for over 20 yrs..and ended up totally disabled..written off by the neurosurgeon and such. I said a Prayer and pointed to the Yellow Pages and was lead to this most amazing chiropractor. He does NOT manipulate the vertebraie which in itself can be risky. He uses a finger and B.E.S.T. technique which BioEnergetic Synchronization Technique. It releases what is pinched AND it gives you relief!!! Its simple and painless to do. Your body then once released can correct and return to its normal state. The sublaxation is back in its place..the inflammation resides . I am a walking talking MIRACLE that this works. AND after 20 yrs of being in pain and disabled I am walking with no more disc problems. Look it up.. get relief. Most MDs only know how to PRESCRIBE RX which only covers it up the pain rather than correct it..or get to the source of the pain..then lastly do surgery. This chiropractor is one of a few in our state that uses the BEST technique. Look it up.. don't suffer if there could be help. Jan Jan

Yes I think for most of my life I have not sweat and felt sick in the heat/sun. Then I actually was tested and they waited..and waited.. taking my temp and nope....I just didn't sweat or hardly at all. When I was going throug Menapause.. I ONLY had hot flashes around my neck..little sweat..but hot flushed feeling. No wonder I get sick in the sun. BUT.. I love the sun.. and the warmth..but only for a few minutes. Jan

WOWEEE!! I don't know what is more amazing that you had 2 docs who BELIEVED you..and knew what you were going through.. OR.. that YOU made it through this ordeal!! Good for you !! AND these are allergests..again.. amazing. Jan

Ok now.. I AM the oldest at 60 !! LOL All I know is that something has been wrong for a long time. But mostly since '93 and more recently getting worse. I have an autonomic problem AND some other kind of disorder or autoimmune problem..like Narcolepsy with Cataplexy but they still have not firmly diagnosed it. I am in limbo since my auto testing in 2/09 which he confirmed some kind of auto problem. Still waiting treatment orders. But good to meet all you ladies !! Warmly Jan

Oh my sounds terrible Angela..HUGS!! Do you think it may be a nerve thingy?? After all ..nerves HURT!! And you saw someone and no luck?? Did you go to the ER?? Have a scan..MRI?? I just feel so bad for you..keep us informed ok? Remember.. you are NOT alone!! Warmly, Jan

HI Sweetie.. YES.. just today!! But mostly I feel in the carotid arteries on right side but sometimes both sides. Its a PRESSURE.. also felt in my chest..often mistaken for a heart attack if I would see an MD and be sent to the ER.. and often get admitted. I DO have lesions on my brain and on the brain stem area. So they panic (a good thing) and admit me. I am discouraged as that autonomic doc at Froedtert clinic has not gottten back to my PCP. He knows my insurance does not cover all of the amt when seeing him but now I feel he dropped the ball. The poor PCP is trying to help..but needs his consulation. How are you doing otherwise? Warmly, Jan

OH yea.. PAIN keeps me up at night..but mostly I CAN sleep through the night..but once in awhile.. ALWAYS around 3:30 AM I wake up and remain awake for a couple of hours.. knowing I have to get up and work.. its gruesome. Jan

Yes thanks for this topic/poll. I too could not vote as they are STILL trying to diagnose me with narcolepsy and cataplexy. Now they are draggin their feet as my Autonomic testing was 2/5 and still no tx or help. My PCP has been trying to reach the neuro who tested me..and I said I would see him again. So YES I have not only nighttime APNEA..but DAYTIME too. And Yes they think my "spacing out" is micro sleeping where they brain "shuts off" reality to make up for poor or lack of sleep. And YES my "episodes" which they think are narcolepsy with cataplexy ALWAYS start with autonomic symptoms..and end up at time with altered consciousness..that looks as if I am unresponsive BUT I can HEAR. IT takes me HOURS to come out of this.. not your typical narcolepsy. I cannot speak for a long time...or its messed up..I am in a major FOG..and I present like I just had a stroke..weakness and off balance too. Go figure.. I am tired of this..and trying to keep working Jan

Yes thank you all for your responses. I always learn something new. Today it happened again. And just when I was thinking that today was such a good day (symptoms wise)!! I was finishing work..driving INTO the Sun..rather than on the sides and did NOT feel any heat..which may be the problem. I mean it was cool out..but once the SUN hit the front windshield..ALL the crappy symptoms came on. I was supposed to go straight to my daughters for Easter dinner but HAD to go home first an dlay down. I took my blood pressure and it was the LOWEST I ever remember (for me) 115/57..HR seemed normal. THen it went WAY up high.. and HR started climibing but for the most part stayed normal. It was my blood pressue that went down low then up over 40 pts. I felt nauseated..lightheaded..and knew I just needed to lay down. After resting for about 2 hours..it was ok..went and had a nice EASTER dinner. I am now worried that I will always get this way while driving.. I mean I cannot AVOID the Sun or I cannot get home. I put the fan on high and even tho it was cool out.. I lowered 2 windows thinking the cool air would help. IT didnt seem to make much difference...or.. it was too late. Any more ideas?? Jan

Oh my BIG HUGS ~!!! I hope you start to feel better and real soon. Yes remember..you are never alone ..cuz WE care !! Warmly, Jan

WOOHOOO!!! GO BOLT GO!!! ANd to think you were so upset before..now you SEE what your husband had in mind for you!! I can only picture you and your kids playing.. shopping..but the fun scene is YOU and your HUBBY having races!!! Glad things are looking up somewhat. Warmly, Jan

I found out from my TESTING that I hardly SWEAT at all !! And to be careful in the sun.. or getting overheated. I am still learning about this and have not even met again with the Autonomic neuro to find out what I should do etc. But I have noticed that now that its sunnier..and my symptoms over the years are getting more frequent and worse..that when I am driving and the SUN is beating in.. I feel nauseated..lightheaded..icky and even tachy. I never faint.. just feel like I am losing consciousness...lose muscle tone..unable to remain alert but can HEAR. They thinks its narcolelpsy with Cataplexy initiated by autonomic problems. What I am asking is WHY the SUN should be so bothersome..its not exactly a heat thing as far as I can tell. YOU see I do not have terrible POTS most of you do. I get symptoms SITTING.. high BP/HR sudden weakness. I have had 2 postiive TT tests but not as bad as most of you. ONLY my BP skyrockets THEN jumps down to normal range..so in affect I do go up 30 points or son. BUT was wondering what on earth is happening cuz I am in the sun?? Thanks for responding Jan

PLEASE.. PLEASE.. tell poor Sarah that she is NOT alone in this..that we folks who dont even know her CARE and will pray and support you both as you find the treatments and healing that she needs..ok? HUGS to you both !!! Warmly Jan

OMG Gary.. this is terrible!! Have you called ANY kind of MD? (not that they will always know)..but still My guts saying its the beta blocker. I once was given a BIG dose of one by a cardologist and WOW.. POW..I thought my head would blow off !! IT was so bad that I could not even sit up.. with the most amazing headache. The cardiologist called back and yelled at me..for not taking HIS help!! He thought he WAS helping my HR/BP problem. HE did not even care...nor make any suggestions Take care and let us know HOW you are doing..why are you going off this med?? JAN

Not sure if you are aiming these questions for YOU to answer.. or others..or both. But my parents are deceased..but VERY much alive in spirit..continue to try and help me..guide me. I was lucky to have parents ALWAYS put us before them. Too much so perhaps.. or is that unconditonal love?? Are you beginning to break the chains that bind you all these years? Are you putting YOURSELF first..now?? You are on your own timetable..but know this.. I will support you no matter what. I do not live your life.. have not walked in your shoes..had to learn my own lessons.. and now I see my own grown children living their lives.. making their own mistakes.. forging their way in this life's journey. I just want to BE THERE for them.. even if I do not agree. May you know such internal PEACE..and FEEL the SERENITY that comes with saying NO to what is not right or healthy for YOU. Again.. YOU are not alone!!! Warmly, Jan