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Tearose, you mentioned supplements in your topic title. Have you started on something new?

Gena, there are exercise videos specifically for people with MS, cancer, osteoporosis etc so why not dysautonomia???? Tearose, I, too am inspired by your messages but so far the cookies/sweets discussion is winning over exercises (LOL).....last night after reading messages, I ate 2 pieces of chocolate candy and I NEVER eat sweets!!!! I think we will need to put a warning on messages -- warning, severe cravings for cookies may result as a result of reading this message. (just kidding in case it isn't clear!) I start my yoga classes again in 2 weeks....I like to think I have been on my winter break. I do much better going to a class than getting an exercise done at home so I applaud all of you who can put in a video and do your workouts.

Like many others, my brain/nervous system is easily overstimulated. At Mayo one of the ENT I saw said that little things in a mall like patterns in the tile on the floor can trigger vertigo in many patients. Often the overstimulation triggers the flight/fight response which may be the reason for the panic attack. I don't try to go to movie theaters because of overstimulation and instead of walking through a shopping mall, I only go to one or 2 stores which I can access from the street and don't have to go into the center of the mall. When I do this , I have few problems. Of course, I go at the least busy time of day as well and this helps. You may find that this problem gets better over time. good luck.

Julia, I hope you are feeling better today. You really have a lot on your plate right now and I admire how well you are managing through everything with strength and determination.

Hi Tearose, just catching up on news and see you have been back at the doctors. Hope you got your EKG done today and get a clean bill of health (you know what I mean!)

I can remember that on a previous discussion on this topic, one of our nurses or nutritionist gave a very detailed explanatin why we need some sugar to get the right mix for rehydrating (too bad I can't remember exactly!). I know that I have tried several other drinks -- most recently, Gookinaid, someone recommended -- and it threw my electrolytes way off and I became very symptomatic. I remember someone else had the same reaction. Once again, it just shows we all react differently! I can't do the gatorade full strength either but I can't do without drinking it or I feel worse. I also dilute and salt the lemon lime flavor. They have a new lemonade flavor I think I may try.

Hey, thanks guys. The GI doc said the procedure went well and he found no polyps, no masses, no ulcers etc. He told my husband he saw "microscopic irritations" and did random colon biopsis. The pathology report said not something to worry about. She said this irritation often occurs in patients who have long term use of laxatives.....ok, here is the problem....I don't ever use laxatives!! I just wish I knew if the irritation is in any way responsible for the pain I get during GI flares. If I did know what causes it, then I could avoid. So, the good news, there is nothing more serious than the IBS we already suspected I had and in answer to your question, Tearose, they are not suggesting anything else. Now, say it with me....I am "normal" (LOL)

Hi Everyone! This is my first post in 3 weeks following colonoscopy and while I haven't come close to catching up on all the news, I do want to say thanks for your thoughtful expressions for my well being. Here's what I learned: staying the night before in the hospital so I could receive fluids made a giant difference; duccolax and magnesium citrate were all I needed for the prep; I was given propofol (heavy sedation) because it leaves the sytem in minutes and you wake up feeling rested with no drugged after effect. As a matter of fact, when I woke up, I felt like a new person!! For 2 hours nothing hurt, I had no dizziness, NOTHING BAD, and I kept saying to my husband (over and over again!) that I had not felt that well in 5 years. After 2 liters of fluid and my ANS put into a deep sleep, I felt FANTASTIC...it is really hard to describe adequately. Then.... well...the same old familiar routine returned. My GI system shut down for a week and I was in pain and then after trying to start it up again, my GI system overcompensated and was in fast motion for another week. I am trying to regain the lost weight and upgrade from baby food diet. I still feel weak every morning when I get up... But, things are looking up and I am glad I had the test done. It will take a while to get back to my regular posting as I am having trouble looking at the PC screen. But, I hope everyone is making progress. A quick glance at the board tells me there are a lot of people working through tests and I wish you all the best. Emily, I have had you in my prayers and hope that you will be feeling better soon. Welcome to the newcomers and also to baby Gabby!

Thursday morning I am having my first colonoscopy and first conscious sedation. I have done all my homework-- reviewing all old posts on the subject --and think I have everything set up as well as one can. I check in the hospital Wed afternoon to do the prep there so they can monitor me and administer fluids which will be very helpful since I know most of you wrote the prep is the worst for you. ALso I will meet with someone from anesthesia group at the hospital Wed and hopefully that will put my mind more at ease on sedation. My husband will be with me which is a comfort too. I am resting, doing mild yoga and visualization exercises with my instructor.....but with all this done, why am I not more relaxed?? My neck pain is worse today and I can feel that I am very close to a hyperadrenergic attacks which I hate. Whenever I get near a hospital this is always a challenge but I am determined to go through with this procedure! While I know this is not a big deal procedure, it is just something new for me to go through and my ANS seems to have some reservations (LOL). Logically I know I will be fine but would welcome words of support.

Sorry you are still having the heavy fatigue. That has to be overwhelming while keeping up with a little one. As to the 2nd doctor, it sounds like you don't want to leave any stone unturned so go! If you have a pretty good relationship with your pcp and want to keep him as your primary, I would suggest calling in advance or asking the psychiatrist to phone him to discuss why SHE thinks it is important you do go. Or, see the new doctor but do not request the results be sent to your primary -- until and if you decide you want them given to him. good luck and feel better soon

Martha, every day it seems someone writes a post about another horrendous doctor encounter. I firmly believe that when many doctors have run out of ways to help people like us, with less common conditions, they turn the tables on the patient. I can honestly say I have not had any experience like you and I don't know how I would react --at that moment-- if I did. Why is it so hard for a medical person to say "I don't know how to help you". It is not what anyone wants to hear but at least it is more honest that what yours said to you. I am glad you stood up for yourself. I am so sorry you had to go through this. I hope the PT may give you some relief.

Blackwolf, if there is one thing that I have learned since becoming ill that is that when YOU know something is different -- as in wrong, you need to investigate further. You had an x-ray but did they do lab work? Something could be off. I find that I get odd pains when I am mildly dehydrated -- which would seem impossible given the fluids I take in, but it does happen. Also electrolytes can get out of balance. Without restorative sleep I feel awful as well. Trust yourself. This has been going on for several months now so perhaps a more complete checkup is needed. It may give you peace of mind.

Hi Janet, yes I remember you (at least I think you are the Janet I corresponded with!!) A fellow Texan. I am so glad to hear you are doing well and that through Dr. Grubb you found a treatment that has improve your health and quality of life.

Emily, I hope that today will go quickly for you and that you have a sense of calm as you prepare for tomorrow. I know you are going to feel so much better when you finally have that gallbladder taken out. Just keep that thought at the forefront of your mind. Keeping you in my thoughts and prayers. Hugs, hugs and more hugs!

Tearose, not boring at all....rather very interesting. I am pleased that you had an obviously productive conversation. How considerate that he spent so long on the phone with you. good luck processing and determining your next steps.

Coming to terms with a chronic illness is a really tough thing to do. I was just like you thinking that after months of not knowing what I had, things would be so much better following a diagnosis. I would get treatment, maybe take 6 weeks off work and then be all better. It didn't work out that way but life has brought me surprises that I never would have discovered otherwise. I am not saying that having POTS has been good for me but it is true other doors do eventually open. Allow yourself to be in this moment and take the time to really see what is still wonderful about your life. You are in a transition which means it can be very confusing. But, rest assured you will get through it. Michelle published an excellent article about the various stages of chronic illness we all go through, some stages many times before we learn how to go forward again. I encourage you to read it. If someone remembers where that is, please share.

Ernie, I know I don't have all the answers to your questions but I thought I might add a suggestion. What about taking someone with you to sit in on your visit? I know you have a good friend who helps you and probably knows a lot about your condition. She could be the one to help you keep the focus on the things you want to ask or get the doctor to do (perhaps a list made up in advance?). Your friend could also take down notes for you to review later. With my last neurologist, I would make a list of the questions I had in advance and hand them to him when I arrived. He was great about going down the list, one at a time and giving me answers. He was very open to discussing different tests or medicines. Unfortunately, he has moved! I like the direct method ---If there is a test you want, ASK him to do it, versus trying to "convince him". I know it doesn't always work but I think being very clear about your needs is a good starting place. good luck

Welcome Kite! Sorry you have dysautonomia but glad that you have found the DINET family. There is so much good information on the website thanks to Michelle and also the posts from the regulars here that you should feel comfortable asking questions. Hey, Dancing Light, Merrill, Tearose and others we now (potentially) have trainers and another yoga instructor for the DINET spa!! I would like to get one of those body fat scales but I think it might scare me....body weight is fine but body fat....no clue. Merrill, you go first! Tearose, are those cookies ready yet?!

Ginger it is good that you and your daughter have come through this experience pretty well. Hope she has a good visit with her Doctor. Prayers being sent for your sister-in-law for a speedy recovery.

Kathleen, your heartfelt words are so true. In the beginning, I believed in the medical system and thought I was supposed to place myself in their capable hands but have learned that it is better to aim for a partnership, where I am more in control of directing my healthcare. Listening to those who have knowledge and then trying to relate it to what I know to be true about my condition. Sometimes this can be frustrating and sometimes this can be empowering. Having others here who walk the same or similar path is also quite validating and assuring. I smiled when you wrote about the "simple" procedure of having orthostatic readings done. A very good ER doctor (before dx) told me that I presented like 2 separate patients: lying down, everything looked pretty good, but standing I quickly progressed to crisis mode. I have told my husband that if I am ever groggy from meds in the hospital to demand that orthostatic reading are taken before they dismiss me, saying I am "just fine". Thanks for taking the time to share your thoughts and I hope you are recovering well.

Dawn, this is really encouraging news for you and your family. I am really happy for you. A doctor who is willing to listen and then help is a real gem. How did you manage on the trip? You "sound" really strong so I hope you are feeling better.

Earthmother, what a great idea! I think they would need to flash red AND send out a screeching noise to slow some of us down (not naming names!!!) Martha, you are one brave person to go out to a party on a rocking boat....thinking of it makes my head spin. Rest well and I hope you feel less dizzy soon. Nina, you didn't say....did you ENJOY your visit with your friends? I hope so. The truth is our friends could probably care less if the house is a little less than perfect but I know I do the same thing. I wish for you a good nite sleep tonight and hope that maybe tomorrow is a holiday for you. Today I went to relatives and had a nice 2 hour visit and now feel like a mac truck ran over my body. I don't get it! take care.

KAthleen, I think it is a good idea to have the basics about dysautomomia. Each person can add their own med information to include with a pamphlet that everyone can use. I think the icing on the cake would be for it to look "official" -- would a POTS doctor write something. I worry sometimes that printing pages from here --which I do -- may not go over so well with all doctors because they are not from a medical est. organization. MAybe just the references like michelle uses are enough. Let the doctors then research. Good idea! hope you are feelling better Kathleen.

Tearose, that is truly an amazing coincidence. I think maybe we should "adopt" the poem for our group! Thanks for sharing.

Emily, yu are a real trooper! I am glad you were able to eat some yesterday. How about sleeping during all this waiting? Poor or no sleep makes me feel 10 times worse. Even though my upcoming procedure pales in comparison to your surgery, it is still a first for me and I find that every time I put my head on the pillow, all I do is THINK. After 4 nights of poor sleep, I gave in Wed and decided to take something every night until I am through my hospital visit. Emily, did you get to meet with ANYone from anesthesiology at all? I know that the anesthesia is a big concern for all of us and you (like me) prefer to have all the details done in advance. Kathleen, in another surgery post, said she gave her doctor and anest. papers from DINET about her condition and it really helped. So if you want to eliminate that concern of waiting til the day of surgery by calling your surgeon's office, ask which anest. group he uses and get the number. Then call and tell them you would like to talk with someone Mon or Tues. It doesn't have to be the exact person who will be with you Wed but someone who knows how to intrepret your needs and note your chart. My hospital anest. group was very easy to talk to and an MD actually answered the phone and he asked questions about my health and then agreed that I will meet with someone the day before the procedure. The anest. even KNEW what dysautonomia is!! Which makes me think....of all the medical personnel, doesn't it make sense for anesthesiologist to know about the autonomic system? Oh, well, I digress. Emily, take care of yourself! Hugs.