mjan

Hi Erika Well I have this mucous that seems to makes it difficult to swallow..sleep ..talk cough alot. The GI guy doesn't examine this exactly. He'll see the larynix but its not his specialty. So.. I may have to see an ENT guy. I have Sicca syndrome where I have extreme dry eyes..mouth and ears. It may be affecting the INSIDE of my throat now too. Jan

Thanks Julie for your response. Boy.. get your child checked out..dont ya think? He should NOT be having a hard time swallowing. I just read about a lot of congenital problems leading later to esophagus disorders. YES been on a beta blocker for years..finally the Autonomic doc has reduced it. As a result my BP has lowered. How did you learn its related? Jan

Not sure if I mentioned this or not.. but on my little vacation last week .. my goal was to try walking. I have not been able to walk due my leg problems where my muscles tighten so hard they dont relax and I get muscle fatigue. OK..start a short walk.. 5 mins in and my chest gets to tight with pressure then my NECK got so tight with even more pressure.. got tachy and it all made me scared to death!! I got back and took my BP/HR and it really was ok. It just took awhile for this tight tight pressure to let loose. 2 docs want me to see a cardiologist and have another stress test. I have had them and I pass but while I am on the treadmill my BP skyrockets and I feel like my head and body is just going to blow. I begged the doc today not to make me have a stress test. My heart work up was ok each time. What else could cause this? My great PCP is not as worried as she listened to my carotids and they sound just fine. I dont want a lot of testing.. the cost alone.. and I have had them all in the recent past. Is this neck/chest pressure autonomic or cardiac? Thanks Jan

Most of you do not know..but I am very COMPLEX!! And that is just my personality!! heheheee Its hard to discuss your medical history as it so complex and most MDs did not want to know the WHOLE story.. ya know what I mean? Well.... a few weeks ago..I was awakened with the INABILITY to swallow.. at all!! THis has happened a few other times..or it been a struggle but this time NOTHING would move when I tried to swallow. Ok.. so today I see the GI guy.. a great guy.. with a nice pleasant personality.. puts you at ease.. and LISTENS!! I always bring notes so I dont forget to mention important symptoms.. I try to keep them to his speciality. BUT what really caught me off guard was ..he was writing down my issues and said.. you have an auotnomic dysfunction to me !! He said it a few times before it sunk in to ME that he knew what he was talking about. He is going to do an ENDOSCOPIC exam and then implant this little device in your esophgus which is hooked onto you for 2 days and it accurately records how much acid reflux you have or dont have. HE'll also do 2 biopsies..one of the stomach.. one of the esophgus. He's not even sure I have ACID REFLUX as I hae no pain and it CAN be silent.. he is more concerned about esophagoitis I think its called. AND he never heard of anyone "forgetting" to swallow when I drink water. I take a sip.. and walk around then notice I never swallowed. Also its been hard to swallow without choking each and every time I eat. YESSS I am taking the drugs even though he said it would only take 5 or less minutes. AND I may have to see an ENT doc to examine my larynix as that is a problem too. BUT.. folks.. HE KNEW ABOUT AUTONOMIC DYSFUNCTION and how it could be related!! Jan

Hi Brye~! Sorry you are in this mess. I hope there is something close to you. But like Broken Shell I too see Dr Barboi at Froedtert hospital. He sees folks from all over. BUT.. you need to have your records and a referral sent to him first. THEN after reading your records his office will call and set up the appts and then testing. Let's see..I saw my great PCP in end of November I think..she did the referral and sent my records..then got a call in December for an appt at the end of January..with testing rather quickly in early Feburary. He was amazing. After years of NO ONE who knew what was going on..he knew right away just from my records and history..and I had already had a positive TTT with no treatment to follow. BUT then he did not follow me. He made a recommendation for a med but then my PCP was on Maternity leave and no one would help me. When my PCP finally came back and called him..then finally emailed him.. he was very apologetic and got me another appt to follow me. Not sure what the break down was..but his RN was good at returning calls and giving results and recommendations. I did not like not hearing the results from him so now I WILL be seeing him. My case is not as severe as many here. BUt I have so many other complications of related type disorders..I need someone who knows what they are doing. Good luck in your search. Jan

First of all you have had TOO MUCH to deal with.. right? BUT.. I know what could help you feel better. A doc or two who KNOW you and your problems that would aggressively tackle your issues/symptoms and be THERE FOR YOU to call or come to!! Right? So.. I do believe in miracles...and YOU deserve one.. or twon Warmly Jan

Yes of course I would go to Urgent care or ER but.. I AM ON VACATION !!! And I was fine once back in my room.. BP/HR all within very nomal limits.. no tachy. I think its this GERD problem..so much pressure.. yet NO HEART BURN.. I can only feel some little pressure in my neck I think is the heartburn. I am still being diagnosed with sleep study.. with my 2nd testing being arranged. Some think I have Narcolepsy with Cateplexy. This NEW pulmonologist does not think so and neither do I. Unlike other docs who dont listen or know what to do.. HE is so agressive. He is sure I have some kind of neuropathy in my legs...causing the buzzing..internal tremors and tingling. NOW I have pain which I never had before. NOW I have terrible stiff muscles in my whole back..with spasms..and terrible muscle fatigue with pain. Of course everything nails it as FIBROMYALGIA. Who cares.. I just dont want to drag my legs around.. I NEED to walk and exercise.. as I am sooo out of shape. I dont have the serious POTS symptoms most of you have. I have an increase in BP/HR when I am at rest sitting quietly.. usually after eating..not when I stand..but have had 2 postivie TTTs. This gets so confusing but I am grateful for 3 agreesive..caring docs in my life. Thanks for your responses and support...yeah.. even my buddy Suzy Jan

Yes I am on it.. but.. ONLY as a PRN. AND that took a lot of convincing to try that a a PRN. Seems it can RAISE your BP..but.. it did not for me. It CALMED down my tachiness..and stopped further symptoms. I LOVE the fact that I can carry it and use it ONLY when I get tacky and it stops an episode.. for me anyway. To hink of ALL the ERs..Urgent care..days I missed of work becuase I could not stop these episodes. We'll just have to see how it goes now. Sorry ... when an MD looks as if they are NOT listening. BUt sound like he really was.. as he was trying to figure out what to prescribe...do you think? AND it tells me that when they do not know.. MANY just dont look at you or say ANYTHING.!! They like to have SOMETHING to prescribe..makes THEM feel better like they are treating you. Its the limitations of of Western meds. I used to see this amazing nutritionist who has the most unbelievable tool that can evaluate where you are deficient.. or tocix and CORRECT IT!! IT has truly surprised many of the specialists I was seeing and now they tell me to return to the nutritionist whenever I get something they can not treat. Its a specialty in nutrition and with chiropractic or wholistic kinds of folks. MDs just do not have this kind of traning.. RX is their tool. Good luck..let us know how you're doing Jan

Ok ok.. I know I am out of shape.. BIG time..but today took a short walk. Immediately my neck/carotid got tight..along with my chest. I have never had this before and I know some of you have. Seems I am adding new symptoms on over the years that are progressive. I see my POTS doc in July... the new Gastro doc this week for an ENDOSCOPIC exam as I have been having trouble swallowing. Seems that is related to my ACID REFLUX/hiatal hernia problem.ITs so bad that it scarring my throat and probaby my esophgus.. Is that related to the tightness in my neck/chest? I DO NOT Have any burning..heartburn.. cannot tell. BUT its part of my POTS symptoms when I get these "episodes" where my HR/BP skyrocket then I lose control of my ability to remain alert..cannot move arms/legs..or talk..BUT.. I CAN HEAR!!! Ever heard of such a thing? And.. get this: Met a new doc for my sleep study.. a pulmonologist.. who wants to help me with my LEGS.. go figure. He seems to be an expert with RESTLESS LEG syndrome..which he said I techinically dont have. He knows alot about leg problems..but my tightness and pain..buzzing..tremors CAN be treated by this Parkinson drug which he prescribed which I dislike. It keeps me UP at night now.. go figure..then it leaves me in a fog..more than usual I mean. Well... he means well.. and has my best interest at heart. So.. just curious as to why my neck/chest got sooo dang tight.. I could hardly breathe.. BP/HR wa ok when I got back. Jan

You know my dear how I worry about you. A "red line" is usually a sign of infection which is traveling..its called celllulitis. How are you feeling today? Is there any warm/hot feelings around this wound? If so.. or if the RED LINE appears you need very strong antibiotics as its a fast traveling infection at that point. Shingles.. another nasty chronic herpes-type virus. Hope you dont get that either. I know how you HATE ERs and MDs for the most part. Glad its better today. Keep me informed ok? Warmly, Jan

Oh my dear Suzy.. HUGS!!! Do you take any meds yet?? I finally got the Klonipin and it really helps when the tachy stuff starts..it stops it from going into a full blown attack. Like you I have other things going on..and I am hanging in..but I do not have the same kinds of symptoms. I do have vision problems..but do not get as sick as you.. I know. All I can say.. is that I a glad you come on here to get encouragement. Maybe there is someone who has similar illness/symptoms that can help more. Remember... I always care... Jan

OH my... is she on the computer? Do you have permission to say why she is in Asst living? Thanks for publishing her address.. I'll drop her a note What a GOOD friend you are Michelle Jan

I am wondering the same. I have sweated very little all my life..but lately do not at all. I also am noticing the SUN/HEAT make me sick instantly. I have every kind of shade device on my car windows as I work and trave with my job. In last few years..the sun coming in through my car window feels like pins/needles on my arms. Now I feel SICK when the sun comes into my car windows. I give up...LOL Jan

I have had 2 TTTs and they were positive and I NEVER faint. I feel badly for those of you who faint. I feel pretty crappy though...does that count? I guess I qualify..but my BP goes up way too high..they falls..and my HR does go up around 30..but not as high as most of you. Jan

Oh my dear.. I ALWAYS look for signs of YOU on this forum !!!!!! HUGS to you and yours!!! Yes I too have had nights of swollen feet...then edema up to my knees!!! Saw my doc.. and yahdedahdah dah.... I cannot wait to have a day or two when its NOT about ME and how i feel.. Be blessed...grateful.. and not to hard on yourself. Its hard to have these noticable comparisons. BUT ... know this... you are NOT alone...and I care...ok? Jan

Oh forgot to answer you inquiry. I did not think I could sleep for the sleep study. They made me go early... around 10pm I think..and wake up early 5-6AM. I think I did sleep some..according to them I did. Maybe it was a long nap. Not my normal amt for sure. You are wired up..EEG stuff on your head and also on your body/legs. They place a pulsox or whatever thats called on your finger. had to sleep on my back and I really cannot. They have an ultra red light on to watch you on their monitors. Dont let that bother you...just go tired ok? But I think I had my doc give me 1 sleeping pill. Because they found the apnea..( mild I heard) but still...you come BACK and sleep with the CPAP on to measure what number they will set your cpap on. Then a nurse came to the house with the equipment and demonstration. Good luck Jan

Yes had one..waiting on another. I do have apnea..snore a little..I mean ONE time and THAT wakes me up. Turns out I have swallowing problems..acid reflux and when I sleep my larynex practically closes..another story. OK..tried the nose pillow CPAP instead of the mask. If you make the straps really snug..its silent. BUT.. as you move.. the hissing WAKES ME UP!! I do not get the oh so wonderful feeling in the AM..but then I do not keep the cPAP on all night. Either I pull it off and dont know it..or take it off for WAKING ME UP!!! ok.. I am still adjusting to all of this... They think I may have narcolepsy with cataplexy. With that you need to have apnea at night...AND take the daytime sleep study where you nap. I am awating that. One neurologist thinks I have this.. another does not. All I know is that I am always tired and draggin.. Stay in touch ok? Jan

WOW Maxine...all I can say is HUGS TO YOU ~!!! Gentle ones of course. That IS more than one person can handle. ITs probably more than the medical community can as well. What I would do ..is..well..pray for guidance.. that the best docs do their best. I meant it. ASK to be guided to a spirit filled DOC or two who are willing to help in just the ways YOU need it. I have done that. LIterally closed my eyes..prayed to the HOly Spirit (and I am not that religious beleive me) and found the most incredible doctor who assisted in my miracle. Good luck.. I'll not only be praying for you..but your BEST CHEERLEADER!! WArmly Jan

WHOOO...WHOOOOAAAAHHHH~!! ENJOY~! YOU deserve to feel good...no matter what.. no matter how long. Hope your family is getting better!! THanks for sharing the GOOD NEWS!!! Warmly, Jan

I have had pressure in my carotid/neck mostly on left side or both at times. But now I am having this pressure/pain nearly everyday. I feel ok with it..but just wonder if its noteworthy to tell my PCP? OH.. and I started my Rx Clonipin PRN. I take it when I feel myself get tachy to prevent a full blown adrenal surge. Both the Neuro and my beloved PCP said to watch my BP as it can raise it high and I already on a betablocker for high BP. Actually my BP is GOOD and even better when I use the clonidine. Its NOT typical to use clonidine as a PRN med and not continous. Oh.. how I wish I had thise med YEARS ago.. I would not have gotten so bad. Anyone else take RX Clonidine? Thanks Jan

Interesting topic and I appreciate all your responses as well. I am working full time. I am 60 and working full time is really getting to me. I had to take a leave of absence from my previous job in 2006 for 3 weeks. It saved my life. BUT I was also seeing this amazing nutritionist..who specializes in ART or Autonomic Response testing. Its not your typical nutritional who looks at your diet etc. HE tests using the autonomic system and first detoxes any toxins he discovers..then builds up the system after this very thorough eval that looks at ALL your systems..your symptoms and all parts of the brain. I had horrible fatigue that eventually I coud not even hold up my head. I took naps at work and that bought me a few more hours but finally my body just quit on me. I was not diagnosed with an autonomic dysfuntion but they thought i had MS then. Anyway.. my fatigue..GONE..my cognitve dysfunction..GONE..my balance problems.. GONE. Now..I am not following what I was taught..I cannot afford to see him now as I am trying to pay for all the testing and evals right now. So this is all my doing. AND fatigue has returned. So.. all I do is work..then count the days until I am off..get rest rest rest.. until yes..go back to work and do it all over again. Its been draining. I do NOTHING else now. My autonomic symptoms are growing..and more frequent now. I have a terrible reaction to the SUN now and heat. It makes me dizzy..disoriented and weak when I am driving. I just purchased every kind of shade possible to protect myself AND keep the air on all the time. Its helping some. I am waiting for my job to approve me working 36 hrs..they denied it so I came up with a compromise. I would still work 5 days but one of them 1/2 day so I am available for their needs and yet I can rest in the morning. I am crossing my fingers it helps.

Hugs to you and your darling one~! The pics are just adorable!! You're a cutie pie too !! Sorry ..never had chest pains or shortness of breath and I did have a C section too. Maybe others will know..best to YOU..get some rest. IS this your first baby? WArmly Jan

Oh my dear one..HUGS~! Gentle loving healing vibes sent to you to heal and grieve. Its ok to HATE this disease and all that it takes and keep on taking from us..the "couldve beens..shouldve beens" But try to just stay with today..the best you can. You WERE with your darling Tami..you held her..took care enough to allow her to die in your arms.I am sorry you could not go further in helping out..but at least you were not denied it all. You must grieve some..not only for your beloved dog..but for YOU..!! Try real hard to just stay with what you still CAN do..love your family..and take care of yourself. Believe me.. some cannot do any of that. IF you worry about the future and what you cannot do..you'll use up much needed energy to get through..well..TODAY!! At least you know to come on here and accept our support!! Please let us know you are doing ok? Warmly, Jan