Broken_Shell

Hi, I also use a contoured memory foam pillow. I had to try a few different companies through before I found a good one... they all seem to have a little different contour and firmness. Good luck! ~ Broken_Shell

P.S. Are you still on the double dose of Prosac? That actually could be contributing...

Hi Erika, If you can afford it, I would suggest seeing your doctor or the urgent care to get checked out and see if you can get some IV fluids. I have had several autonomic "GI flares" like this that landed me in the hospital. Keep trying the Immodium, and drinking lots of fluids. The foods that seemed to help me slow down are brown rice, apple sauce, bananas, and egg whites. Keep in touch so that we know how you are doing. ~ Broken_Shell

Hi Maggie, I had this done in April. I was admitted as an observed patient because of my dysautonomia and hypoglycemia. I chose not to take the Reglan, but had no problems with vomiting. It does make everyone nauseous though. The problem I had was that I drank nearly the entire gallon (about 5/6) and was very bloated, but still had no BM. I have a lot of autnomic symptoms relating to GI activity, and all of this GI distention and pressure triggered me to go into strange spasms and tremors - mostly in my hips, low back, and my eyes kept on jerking about and twitching. The nurse got alarmed and called my GI doctor, but he had nothing to say about it either. Once things got moving, I was woozy, very weak, and light-headed, but the other symptoms settled down. I did ok with the actual scopes, but it took me extra long to "wake up" afterwards. I was dizzy and couldn't sit up for a while, so they just put me back in my room until I was steady enough to leave. This was the second colonoscopy that I have had since developing dysautonomia, and had no long-term problems either time. Just know that when they say that you get cleaned out they are not exaggerating... the BMs become clear liquid and it really wipes you out, so you might want to keep a cool wash cloth close by in case you are getting faint, and maybe some soft TP and flushable wipes since your rear will likely get sore. Best wishes! ~ Broken_Shell

Hello, First of all, big HUGS and reassurance that those of us on this forum understand and know how you are struggling and that you are doing your best to be able to function and be a self-advocate in your treatment. Second, I am so appauled - I gasped when I read your post. That doctor obviously had made up his mind before coming into your appointment, and if that is how he feels, he certainely will not give you adequate care. A couple of times I have had health care providers going over my medical history say to me "so you don't have anything serious, right?" I want to say, "well besides being unable to stand up or work or complete my education or care for myself for 24 hours without assistance, or go shopping, or exercise, or shower on my own, or drive,.... no I don't have diabetes or hypertension and I haven't had a heart attack if that's what you mean." They just don't get it! If I were you, I would search for a new doctor, but I would also probably send a polite letter to this doctor explaining your situation and your symptoms, and saying that you were offended by his comment and are choosing to discontinue treatment with him because you do not feel that he has the exertise and background to care for you. That being said, if you are well enough to make it to another appointment (that's the irony of this all too), would you be able to see a psychologist just for a consult?... the reason I ask is because psychologists know about mental health issues, and therefore they know when they DO NOT exist. The psychologist would see that you are suffering from a medical condition that needs to be treated by a specialty MD, and this might help avoid future "confusion" (big quotes) over a diagnosis of dysautonomia. Sometimes it is outrageous, but we almost have to prove that we are suffering from a real and disabling medical condition when we barely feel well enough to make it through a day! Support and Hugs, Broken_Shell

Hi Jan, I am glad that your appointment went well. Even though it doesn't make you feel physically better, it is wonderful to hear a doctor tell you that you are not crazy and confirm the diagnosis you have suspected for years! Was this with Dr. Barboi? Who are you seeing for the GI testing? Best wishes, Michelle (Broken_Shell)

Sorry to hear what's going on... I understand that you are scared. Are you on a beta blocker yet? I am wondering if that might help in a small dose - it should help the racing heart and tremoring. I know what you mean about the trembling though, I got that when I was in the hospital a few months ago, and it was violent and painful, almost like I was having a seizure. Even though they might not be able to help, it is still a good idea to contact your doctors and let them know what's going on. Keep us up to date. You are in my prayers! ~ Broken_Shell

Hi, It is hard for those not living with a chronic, disabling illness to understand what we go through everyday. I feel the same way - should I tell my friends that on a good day I can push myself to walk from the car into the store, but I have to sit or crouch on the floor of the store while my mom does the shopping, maybe I can walk down one aisle before I get down? - Or do I just say that I went on an errand with my mom and let them think that I stood up and walked like a normal person and wasn't praying for strength and survival the whole time I was out of the house? You spoke my thoughts exactly - are they tired of hearing from me that I do not feel well? Because I am sure tired of hearing myself say it, and even more so of having to feel this way! It is confusing for me because on one hand I feel like I want to give my friends a reason to talk to me, so I try to sound perky and upbeat on the phone, but at the same time I don't want them to think that I feel ok and am just making excuses for not being able to visit them. It is a hard line to figure out, and it's just another one of the challenges those of us with dysautonomia face. On the other hand, our situations give us insight into what it would mean to be a caring, compasionate, and true friend, so if our bodies ever give us the chance, we will be able to really apply the golden rule in the future. ~ Broken_Shell

Hi Suzy, Hugs, Hugs, Hugs, and prayers for strength. I understand how you are feeling, and I hope that things will start to make a turn for the better for you soon. I just have a few thoughts... are you receiving disability? If so, you may be eligible for in-home personal care for a limited amount of hours per week. I am looking into this for myself right now. It might even be something that your insurance would cover if you have a doctor write an order for it. Are you looking for a new primary care doctor or a specialist? I will try to write you back about the kinesiotape as soon as I can. In the meantime, just feel all of us caring for you with our hearts and don't be afraid to ask your family and friends for help with your body. ~ Michelle (Broken_Shell)

Yes, I have various changes - flushing, looking pale, even looking yellowish or greenish, especially if I have symptoms including nausea and increased bowel movements.

Does anyone know how to help peripheral normotensive cerebral hypoperfusion, i.e. lightheaded and symptoms of reduced blood flow to the head with normal blood pressure. My BP usually runs about 90/65, but I can only stand up for a few minutes at a time and am now having symptoms sitting as well. The only thing that helps is laying down. Does anyone know if midodrine is supposed to help this? What about Florinef? Drinking pedialyte? Thank you in advance for your feedback and suggestions. ~ Broken_Shell

One more thought Rene, Have you ever tried a PPI... even just something OTC like Prilosec? ~ Michelle

Hi, There is something called interstitial cystitis which sounds like what you are describing. It is common among people with dysautonomia, IBS, CFS, fibromyalgia, etc. Here's a wikipedia about it... http://en.wikipedia.org/wiki/Interstitial_cystitis ~ Broken_Shell

Have you checked your blood pressure when this is going on? Is it continuous if you turn your head, or only happen some days?

I don't experience this, but does it coincide with your heartbeat? Do you have any other symptoms with it?

Oh Rene, I feel your frustration in your post and I wish I could offer better advice! I do owe you a PM...on my list when I feel up to it. Here are the only things I can think of for the nausea... When I get the nausea and diarrhea episodes, it helps if I eat a bland, dry diet - brown rice, egg whites, bananas, applesauce. The fish oil could be making things worse, have you tried stopping that? I know you were negative for celiac, but have you tried gluten free anyways? What about dairy free, corn free, soy free, additive coloring and flavoring free? Have you tried probiotics? Several varieties? Considered a naturopath to go the route of yeast overgrowth treated with Nystatin, probiotics, and an elimination diet? What about the anti-nausea meds mentioned by Heiferly? Good luck, and please know that I am keeping you in my prayers! ~ Michelle

Hi Bizbiz, I wonder the same thing. My hands and feets are always cold and purple and blotchy. If I shower though or go into a warm room, then they usually turn bright red. From the symptoms I have, I feel like I must have blood pooling because I always feel like there is not enough blood going to my head when I sit or stand up or eat. However, I think that it might not be so much of a traditional "blood pooling" as an inappropriate distribution and shunting of blood with respect to position and activity. I wish we could find more definitive answers about what goes on in our bodies. Then we might at least have a better idea of how to help ourselves function better. I am doing some trials with midodrine now, but it makes me hestitate some because this medication causes peripheral vasoconstriction, and my toes literally look like grapes without any medication. ~ Broken_Shell

Hi, I am in the club of forum women who have a very difficult time with hormone fluctations and menstruation aggravating autonomic symptoms. As I am sure you know, changes in hormone levels can cause many symptoms and effect the balance of the our already dysfunctional autonomic nervous systems. Here is the only specific thought I can speculate about the bradycardia... progesterone is present in the week before a menstrual period, and progesterone is a natural central nervous system depressant. In healthy people, this might be related with increased drowsiness and fatigue, but since slowing of the heart rate would occur in the presence of CNS depression, I think it is feasible to hypothesize that in someone with dysautonomia, bradycardia could result. In fact, this might even occur in healthy women. I just think that the decrease in heart rate might not cause symptoms in a normal person though, but it certainely could in us. That's just my two cents worth and educated guess . ~ Broken_Shell

Hi, I am also terrified of medications, take as few possible, and have had many bad experiences with medications that have made me this way. I am currently working on a small trial of with midodrine myself actually. That being said, I would suggest that you at least give the medications a try. It would be awful if you passed something by that may have helped you get somewhat of a normal life back without even giving it a try. Besides, midodrine and florinef are relatively "benign" medications compared to some of the other options. What I do if am trying a medication is to start with a tiny dose - I literally cut the pills into 1/8 or 1/6 of a pill sometimes. For midodrine I am starting with 1/4 to 1/2 of the lowest dosage pill every few days and monitoring my symptoms and reaction afterwards. Good luck and let us know what you decide. ~ Broken_Shell

My computer just deleted my long response ... here's an abbreviated version. Hi Suzy, You took the words right out of my mouth! I have very bad myofascial problems and pain and tightness in my neck and the base of my skull. I have told doctor upon doctor for years that there is some connection between my neck and my dysautonomia, but they just shrug their shoulders... and tell me that I am tighter than tight throughout my body, but especially in my neck. I was actually told yesterday by a podiatrist that he couldn't believe how tight the muscles and tendons in my feet and ankles are. I am one of those people who gets weekly myofascial and craniosacral work done by a PT, and it does provide benefit. Some days it helps my pain and tightness more than others, but the improvement is usually short lived or I make tiny baby steps of progress. I have been going for two years and working with a PT who I really trust and works well with my body. (You have to search to find a good practitioner). In terms of autonomic symptoms, I don't experience long-term changes in autonomic symptoms with the myofascial therapy, but I do know that for 24 to 48 hours after many of my appointments my symptoms are less severe and my body is in somewhat better control of itself. Also, I have mentioned on the forum before that using kinesiotape has helped me a lot. It is very effective at bringing down my muscle tension, and I have to constantly have it on several muscles in my neck and shoulders or the tightness is so severe that I am constantly dizzy and barely able to tolerate sitting up and holding my head up. Please feel free to PM me if I can provide you with any more support. ~ Broken_Shell

Thankful, My heart hurts for you loosing something that you are probably very proud of. I send hugs, as well as this thought... Nursing is one of the most caring professions, and regardless of whether or not you are able to practice again someday, you have undoubtedly touched many lives in the work you did. If you are able to return to work in the future, you will be all the better of a caregiver for having had the unfortunate opportunity to have dysautonomia. Keep your head up and always be proud, and as your name says, thankful for what you have accomplished so far inspite of dysautonomia. ~ Broken_Shell

Hi, My hair was falling out when I first started getting sick. I am not sure what it can be attributed to, but here is a thought. Have you had your iron levels checked? Anemia and iron deficiency can cause hair loss. Other dietary deficiencies can also cause this. Have you been having more GI problems or changed your diet recently? ~ Broken_Shell

Hi Angela, Sending hugs... just keep reminding yourself that inevitably things just HAVE to get better at some point. I hear you though... Murphy's Law applies to your body big time when you have dysautonomia ~ Broken_Shell

Hi, I am sorry for what you are going through with your family. I wish there was a way that we could make everyone understand what we experience every day. Remember though that 15 is a hard age, especially when your daughter's life is probably changing a lot right now due to factors both related to and completely seperate from your condition. This is one thing that I think we all struggle with... we are scared of what is happening to us, and our family members are scared of what is happening to us too. Fear of the unknown creates a lot of stress for everyone. We all want to stand by our loved ones in difficult times, but some days we just feel like we need a break, and I think that this is a source of stress for all of us and our families. It might help your daughter feel better if you let her know that you understand that what is happening is scary and difficult and that there will be some changes that need to be made, but that you love her and are going to do what you can to make both of your lives the best quality that they can be. Hugs and Warm Wishes! ~ Broken_Shell

Hi, I have an almost constant headache and everything seems to make it worse... I don't know what to blame it on - eating, bowel movements, standing, etc. I wish I could offer something to help, but I can tell you that I understand! ~ Broken_Shell