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mjan

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Everything posted by mjan

  1. Yes I get it..usually when standing. I always attributed it to MEDS!! Its one of the major side effects of pharmaceutials. But I will pay attention to what you all notice as well. Jan
  2. Hi Julie Have I told you lately what a GREAT mom you are? I am taking clonidine nightly. Started with hit as a PRN ONLY if my tachy/autonomic symptoms started especially when working.Wished I had it a long time ago. BUt now that I take it nightly rather than another tablet of Atenolol.. it helps me sleep and I am not groggy any more. At least not from that. Hope your son gets used to it. Does he take it late at night? Maybe back up the time in the evening so its not so bad in the AM. Let us know k? Warmly, Jan
  3. Although there is often an autoimmune disease connected to Dysautonomia..and I have one..I do NOT get the colds/flu or can brush it off if I start a sore throat etc. I see this amazing specialized nutritionist to rid my body of any toxins (believe me we have a lot from what we eat..drink..breathe in pollution and even from our meds). THen he builds UP my system by this very thorough evaluation that can detect any area of my system or brain that may be depleted of nutrients or toxic. He gives me organically grown nutrients which do not interfere with ANY meds cuz its WHOLE FOODS ground into tablets. He is so amazing that my specialists send me back this nutritionist as they cannot do what he does. Once our brains (and systems) are replenished.. and inflammations in our body eliminated.. you will see your symptoms diminish as your brain is healthier to fight off any invasive elements or virus' He corrected my balance..cog fog..improved my memory etc AND..I have this product called IMMUPLEX to keep my immune system healthy. Good luck warmly Jan
  4. Oh my dear Elfie.. you are young and need him right? You think of HIM..more than you.. right? Trying to keep HIM happy..more than you..right? He fits ALL the characteristics of something much scarier. When I said.. I bet he is charming..well liked.. makes promises..rarely if ever keeps them mosly likely never admits he's wrong.. never truly sincerely apologizes if he did hurt you.. and on.. and on its beause I am seeing a pattern with him. OH.. he may promise you.. conjole you.. but honestly.. does he make a single change for you????? This is the pattern of a sick relationship not a loving..giving partnership where YOUR needs are met God forbid.. you are headed for Domestic violence Oh .. he may not HIT you..not right away.. maybe he'll never hit you.. But has he ever slapped you.. pushed you.. has he? Has he tried to control what you are doing.. who you are with.. where you go? Does he want YOU to only see and be with him? And no other friends.. or even family? Does he make you feel so special to him.. you choose NOT to be with no others but him?? Does he ever put you down.. call you names..say he's sorry..then..does it again.. and again. Do you ever blame YOU for the way he acts.. feels..as if its all YOUR fault?? Be careful..cuz he WILL..he'll hurt you.. shove you.. slap you..one day. You are struggling with a nasty challenging disease.. and that is the hold he has over you. He would NEVER treat a MAN the way he treats you.. He wouldn't dare.. and get away with it.. so why does he treat YOU the way he does? Sadly.. I am afraid..you're going to find out for yourself. For you see Elfie.. we dont have feelings for him of course as you do. Do me a favor ok? If you wanna. I know this is so hard to hear right now. Write down ALL the reasons you like/love him. Write down ALL the things you do not like.. wish he would change. Can you honestly ACCEPT him just as he is?? KNowing it may just get worse? He will NEVER change.. he heats up.. acts nice.. then well..not nice.. mean blaming you.. and on and on..until he gets his hold on you. My heart breaks for you.. I am truly scared for you..but remember.. I care ok hon? Jan
  5. A WARM hello and WELCOME to you and your wife ~! I am soo amazed at not only how you show you care..take an interest in this disease (as you know its quite complex).. BUT.. that you would join a forum for her is so wonderful to me!! Of course YOU need the help and support as well. So remember..that WE care and will support YOU too!! AS far as your questions.. I do not know who are the spouses and partners on this forum..but I bet they will come through for you. The medical system..gosh so COMPLEX it would make you crazy. I hope your doc figures out a diagnostic code to get your wife into the hospital. What an excellent idea. If anyone is interested...note that I am NOT promoting any products or false claims..just what worked for me and several other folks I know and care about..approved by my doctors..to compliment your medical care consider this: I do know there are specialized certified nutritionists especially trained and equipped to evaluate your entire system..including every area of your brain..painlessly. Its done in an office setting..partly computerized. ( by those you can afford the program). They read your body systems through our electrical energy and tell you what area is affected..how to build up your system..detox safely if necessary..how to manage and maintain your disease/disorders. It worked for me when I had severe Autonomic problems..brain fog..severe weakness..memory and balance issues. ALL improved to this day that got me back working. Its NOT a cure.. but man a major improvement so I can continue to work and function. My neurologists were just so amazed that even they would send me back to him. What I really like is that you only use each nutritional product at a dose exactly for YOU.. ONLY for the time your body says you need it. For example.. if you need to enrich and decrease inflammation or toxic areas of your brain you dont continue to take the products forever..like with so many meds. He can even help with side effects of meds..he does NOT REPLACE YOUR MEDS at all..nor diagnose. BUT..Its a WHOLE new way of thinking.. so being open-minded..and deserate enough like I was helps. I know.. I am an example that you CAN improve and feel better. Take care...HUGS to you and yours.. Jan
  6. I did not mean to end it the way I did.. hit something accidently and it flew away. I am feeling so sick inside for you. I am scared for you even more. I do not want you to find out the hard way..how much worse its going to get. Is he the charming type? Is he likeable to most? Does he have mood swings? Is he sorry then..make promises..make you FEEL BETTER but then change again? PLEASE...do not settle.. YOU and YOUR health MUST come first. WE're here for you.. you are never alone ok hun? Warmly Jan
  7. Oh dear Elfie... HUGS to you !!!! YOU come first.. always...always..always. ASK yourself this.. AM I settling? Am I settling for the crumbs of niceties he offers? What was the BIGGEST clue to me.. is when you said you have to walk on EGGSHELLS!!! Why is this a clue? Cuz he is training you up that first and foremost .. HE COMES FIRST..always..always!!! You fit in when its convenient for HIM.. and you must remain convenient for hIM..his ways..his lifestyle..etc It WILL GET WORSE once you move in. I can almost guarantee it. You may need for reconsider many goals in your life.. but its YOUR LIFE...AND YOU ARE RESPONSIBLE FOR YOU
  8. WOWEEE..YIPEEE!!!!! The FIRST time.. that IS amazing!! Its going to be so nice...do you already have health insurance? Again.. I am so happy for you Jan
  9. Again.. I am hoping and praying for YOU..but even more for these docs to get it together. Just wondering...how bad is it if you do not have a GAG reflex? Aspiration risk? I too have had swallowing issues..everything ruled OUT (GERD ETC) so "I" think its CNS Told one doc that I sometimes "forget" to swallow. He never heard of that. I walk around with water in my mouth.. then cognitively recognize that I have not yet swallowed. Go figure YOUR MIRACLE IS ON ITS WAY!!!! Jan
  10. OMG...all I can say is how BRAVE you are..taking on the Medical experts..sticking to your guns..needing so much help. My guess is that YOU are helping THEM..learn from you..and help the next person that speaks a similar condition. Just sending HUGS..and HEALING VIBES.. BELIEVE in being directed SPIRITUALLY..and watch and see your MIRACLE unfold.. Warmly, Jan
  11. Hello Dale~! Sorry you are struggling so. WOW that is a very high and dangerous BP. What I would do is call your cardio or whoever is familiar with your POTS DX. If it does not stay up high...well then it may be the POTS. I have dysautonomia with periods of hypertention...went to ER and they were going to place a med in my vein to bring it down BUT..knew that with POTS it may come down on its own and then it would be dangerously LOW. At least this doc listened to me..and waited..and sure enough it came down to a nice normal on its own..just took awhile. OH and this happened while I was working IN a hospital at that time and the RNs insisted I go to the ER. THey knew nothing about POTS. Let us know how you're doing.. Jan
  12. Wishing you healing vibes.. and hugs. Here's hoping these docs are spiritually guided to help you figure things out. Dont give up..we're all here to help you through... warmly Jan
  13. OK..Ok.. I AM trying to take DEEP...slow breaths....cuz I found these docs advice to you so wrong. It just felt wrong. Sorry. They have knowledge yes..research..yes. But I go back to MY own theory that if these docs went through what the patient has been experiencing...they would think differently. There may be some truth.. but I feel strongly they are lacking the knowledge that lead you to this condition. If only it were hyperventalation.. you would simply change your breathing and be ok..whalla..no more symptoms. I just do not feel this is the case for you each and every time. Hyperventilation does not cause you to be so sick you are bedridden..does it? Yet paying attention to our breathing patterns..yes.. a good thing. MEDICAL PERCEPTION based on their experiences with patients..(legit) and based on their training and expertise(also legit).. BUT its can be limiting. There are so many other things to consider. Think of those here who have seen many different specialists. I have seen 4 neurologists..2 Rheumatologists..now a Pulmonolgist..GI and multiple PCPs. They are all trying to figure me out.. and agree its complex and very chronic. Everyone of the neurologist had a different opinion. BUT at least a couple did not make up their minds.. one especially monitoring me for MS.. says he never rules things out or in.. he waits and monitors. FINALLY he ruled MS out..but left me hanging. IT took someonere HERE to help me just recently to check on periodic paralysis related to potassium changes in the muscle. What looks like fainting.. (I am awake..can hear) but I cannot move. It always starts out with autonomic symptoms. I was lead to an expert MD (who also HAS this condition) to help my PCP figure this out. Here we are on the phone then my PCP and me are on our computers reading this web site. I get aura's too with this..and cannot move..I also used to have what looked like seizures.. I have time to get somewhere safe..I don't just fall down. But still I am going to have a sleep study to see if I have narcolepsy with cataplexy (loss of muscle tone). I am truly grateful for these docs...trying so hard to figure me out. My POTS doc said he'd be the consultant to those MDs who know nothing much about Dysautonomia.. as he told me you have more thant POTS..its more complex than that alone. Keep a diary..foods..stressors.. anything you can figure out happens before..during..and after you have these episodes. I hope you are guided to the right docs who can help you figure this out. Warmly Jan
  14. HI Again.. Just wondering if you found out if you live in a "no fault" state? You should get joint custody but.. its the physical placement and working out the details of visitation that could be challenging. Keep us informed. Prayers...lotsa love Jan
  15. Gosh Sweetie.. I know this is hard. Its scary.. your world has been shaken to the core. You need spiritual guidance that first comes with believing in something...someone..whatever you deem important. Stay focused..and beleive you will be GUIDED. OH..you WILL grieve...and go through all those crappy stages: shock..denial..anger..depression..resentment ..and on an on till you get to acceptance. Its not something you do alone...you need others..to ask for help..yup.. ASK for help. You will look back and what seems so awful and sorrowful today...will be replaced with an even BETTER life..love..happiness.. feeling so good about yourself and all you made it through.. which like it or not...does make us stronger. HUGS Sweetie Jan
  16. Yes one of my earliest problems is synergism between one med with another. Had a hard time taking hypertensives. But Atenolol has been ok but not always helpful with keeping BP from skyrocketing. I am on less Aten..now and use Clonidine which really stops all AUTONOMIC symptoms. (Finally!!) Albuterol is notorious for increasing BP/HR..so I use another one Xopenex HFA and it does not make me tachy. I remember reacting to Prozac..and sorry I hardly ever need an antibiotic..and wish they would avoid them if at all possible. My nutritionist helped a lot with side effects and other supplements to build up my system and decrease my symptoms. But he is a specialist in his own right. Not like your typical nutritionists. He has specialized training. Ended up having multiple meds eliminated and noted in my medical history. Good luck in getting help. Warmly, Jan
  17. Sweetie I am sooo sorry {{{ HUGS }}} Have you looked up the laws in your state? Many states have no fault divorce..and..when it comes to custody..you share custody which means you both have the right to make decisions about the children over school...health and..religion. Next you work out visitation..usually with help of each of the lawyers..days..holidays.. how much of the week etc and who gets physical placement if not 50-50 in time spent with the children which is a separate issue. Some parents can work this out amicably..others cannot or do not live up to your agreement. If you cannot agree..you have to go through mediation which is a requirement with children in a divorce.. and if you cannot agree..then a court appointed guardian ad litum is provided to protect the rights and well being of the children until the issues are worked out. Alimony..or maintainence..is decided also..so don't count yourself out if you deserve it. This may end up costing HIM more than he bargained for. Lawyers know all this stuff.. and will walk you through it. Child support is also worked out separately. Many guys THREATEN to take the children away from their mothers as a form of intimidation and abuse. IT works..its scares us. But know this.. he would have to PAY a lot of money..go through family courts.. psychological evaluations (both parents) and the kids too..then counseling if needed. He can make up stuff about you.. so have your ducks in a row.. keep track of what YOU do for your children..how involved you are..how you keep your finances going.people who can attest to your character (tho may not be necessary). Many guys do not want their kids full time..alone to raise anyway..but they want to make you miserable and scared. a JUDGE will decide with the input of the Guardian Ad Litum's feedback. So.. be prepared..look up the laws etc. This AWFUL event will make you STRONGER I guarantee you!! OH..it will make you scared so you must get support for yourself. A church.. a single mothers support group.. US here on this forum... will all be there for you. YOU can PM or email me ok huh? Warmly, Jan
  18. Just read a MDs review that its not true.. they even have studies on this. Its best to keep your heart disease risks down. A MYTH then?? Jan
  19. YESSS!!! I was just looking at my earlobes without earring on.. and noticed this. I have hypertension as part of dysautonomia..POTS..with other disorders. Is that for real??? Jan
  20. {{{ HUGS }}} You DESERVE love...understanding..CARE..and lots of that is HERE for you k? This is all too famliar. I thought I had a husband who offered understanding..devotion..and was oh so thoughtful. THEN.. he gets brain damage..short term memory blown out with an hour long seizure.. I learned early in the relationship how influential his parents were What THEY wanted was more control...and we disagreed on his treatment. He'd forget why we were together..leave..then his feelings would emerge..they are deep..and he'd come back..then leave..then come back..each time longer and longer..more and more being influenced by his family. I truly believe they told him he could never care for me.. ( they thought I had MS at this time) so might as well leave permanently. He was already feeling insecure about himself. Still...I was the one taking care of him..working full time for the health insurance and resting the rest of the time. He kept saying..maybe I just needed to exercise etc. I even fell one time and he told me I could really get up if I tried. He tried to help me.. he did. But I was not "fun" a lot of the time.. I know. Few years later he started a divorce..it SHOCKED me.. I knew it was his parents doing..he'd never ever think like that...then..well.. he died...unexpectedly..while staying with his parents.. the furneral was awful.. they tried to push me out even then.. DISEASE tests all relationships..it brings out the best and worse in some. A separation gives one time to think and re-think what IS important and well.. WHO is still important. NO ONE LIKES TO BE SICK..and miss out on LIFE!!! Hang in there.. you'll grieve..get mad..sad.. cry.. but remember..you'll have the BEST FOLKS here who truly understand.He needs time to figure this out for himself.. I hope he includes you in the discovery. Its hard to be left out.. wondering.. I know. PM me ANYTIME.. or email me k??? Lotsa love and hugs Jan
  21. As scary as it may seem (or not) its good to get a NAME to the monster!! Now who will treat you and will you get the same meds as your friend? How do you know about the cure for Hep C??..that is a miracle. Take good care and let us know how it goes. Warmly, Jan
  22. How interesting as I am having another sleep study AND MSALT daytime at end of month. I have already had one sleep study and thought I was going to bed too early..and WITHOUT TV hahahaaa... I think it was around 10pm. I finally fell asleep and was told I would have to have another study WITH the cpap to know what levels it should be set on. I guess I have sleep apnea..hypertension too. AND told several docs that I do stop breathing during the day cuz I suddenly gasp..then breathe again. AND..I know I am a very swallow breather. Ironically it was a Rheumatologist who was measuring my rib cage..had me breathe and said I breathe too shallow. I have a Cpap..get the straps on tight enough there is no hissing..but once I turn to my side ..my preferred position..the hissing would start..and I spend time adjusting the straps rather than sleeping. I find the cpap more trouble..and never woke up more refreshed anyway. THEN it would be worth it. Now I am going to have the MSALT I think its called.. to nap 5 times during the daytime to see if I have narcolepsy with cataplexy. DEFINITELY my autonomic symptoms precede these "episodes" I get that look like I am unresponsive yet can HEAR as I lose control of my abiltiy to remain alert or be able to move arms..legs. Its my slow mo way of fainting..only .. I can HEAR Jan
  23. Actually it was the neurologist who was conducting the EMG tests on both arms..and upper back (not sure why there). IT was positive for both with the right side weaker. I told him my legs are worse as far as neuropathy and then mentioned that I have tremors sometimes INSIDE my head that wake me UP!! (besides other areas). He said..I believe that YOU beleive you have tremors that no one can SEE. But as soon as I told the Autonomic doc..he KNEW all about it..(he did not explain it though) and said.. I bet others think you are crazy...well you are not crazy. OK..but what the heck causes it? That is all I ask. Maybe there is something one can do to prevent them. Jan
  24. {{{ HUGS }}} I am sorry you are struggling so. I really dislike when MDs tell you the worse case scenario without full proof!! Do you have family/friend support?? You know you are not alone..there is a forum I noticed on this disease. Its not fatal. Just like all these crummy diseases you learn to reduce the stressors and symptoms the best you can. But..you MAY NOT HAVE it either. What are they basing it on?? Could they get the symptoms confused with POTS/Autonomic disease symptoms?? Take care... lots of blood vials mean they are running multiple tests..to rule things OUT as well as diagnose.
  25. Awwww....HUGS.. Just remember...one day these docs will be patients... Hang in there k? And keep us posted Jan
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