dawn

I've thought about trying it. I think my ankles would swell. I had to sleep sitting for 2 nights, 3 times when they did that treatment for vertigo. I felt awful. The incline pillow sounds like a good idea. Dawn

Morgan, How discouraging!!!!!!!!!!! I always have "normal" tests too. My stomach doesn't empty yet the gastric emptying study was normal. When I can vomit food that I ate 2 days prior DAH it's not emptying. Don't disappear, we need your insight and guidance. I'm so depressed lately. Lets have a pity party. I'm tired of my friends calling and talking about the vacations they are taking and the concerts they are going to (Paul McCartney). For me one day just runs into the next. Yah gotta laugh at the irony of all this. Take Care, Dawn

No doubt, down in the hole. Spend too much time alone. Need to work on mental hygiene!!!!!!!!!! Went to walk in clinic this week with pain between my shoulder blades for 14 hours that wouldn't quit. Tried antacids and Zofran. EKG was OK. She thought gastitis, taking Prilosec twice a day and Mylanta. Symptom after symptom. I want to get off this Merry Go Round. Nausea, Panic, Sweating, Fatigue, Headache, Tachy, Insomnia. Went off my estrogen in October the hot flashes are the icing on the cake. Dawn

Thank you for your support. Geneva, your post was one that gave me alot to think about. It brought up my guilt issues. My first husband Steve (the love of my life) and I were married when we were 18. High school sweethearts. Life was wonderful, he was an athlete, a discus thrower. He got a scholarship to the University of Washington in Seattle (his brother played for the Sonics). I had the dream life. He qualified for the Olympics in the 1970's. We were best friends. Then...my stepdad got throat cancer back in Wisconsin. He insisted on dying on his farm. (Had his jaw removed, a trach) it was just too much for my mom so we moved back to Wisconsin with the intention of moving back to Seattle. He fought for 2 years. At his funeral I was 6 months pregnant with Ben. We got kind of comfortable being back home. The Saturday before Thanksgiving in 1982 (Ben was 15 months old) Steve suffered a cerebral hemorrhage. He had brain surgery which left him paralyzed on his left side and with an IQ of a 3rd grader. They had to remove a large portion of his brain due to an underlying AVM. He was hospitalized for 9 months. To make a long story shorter after 2 years I divorced him when he also developed manic depression. Life was a stress filled ****. It is all like a blurr to me. He is still alive and lives with his mother who is 89 going on 60. So did I stay and do my best? Yes, I think I did. But in the end I left. I've seen therapists and psychologists and the guilt never leaves my heart. When I see him I get physically sick afterwards. He's a shell, he's not in there anymore. I don't want my present husband Larry to feel like he has to stay. I think the reasoning is "I left", I can't expect more from him than I could deliver. Dawn

Roselover, I have the same problem. Usually drink at least a 12 oz. glass of water before I get up along with my beta blocker. I always feel really bad in the mornings, morning clinic appointments kill me, but at least they can see how bad I feel. I seem to feel better when I only sleep about 4 hours, get up awhile and drink, then go back to bed. I have had a sleep study. It was a joke. The adhesive they use for the electrodes on your head and on the piece under your nose smell like rubber cement. Of course you're going to mouth breathe!!! I fell asleep at 11:30, someone knocked over their tray table at 2:30 which woke me up. I told the tech I needed to get up awhile so I could fall back asleep (the adrenaline had kicked in). She said well, the test is over at 6:00 am cuz that's when I'm done. So I left at 3:30 am. They diagnosed me as moderate sleep apnea and gave me a cpap machine. i never got the hang of wearing it. It made my sinuses ache so bad from the air blowing in. In my clinic notes my physician wrote "CPAP a bust." I agree an IV would be so helpful during the night. Dawn

Geneva, I guess we all know that we just do not thermoregulate like we are supposed to. That's why the hot weather affects us so bad. In addition most of us don't sweat properly. The only things that comes to mind is hypothyroidism. Have you has your thyroid checked lately, besides a TSH, you need a T3 and T4 checked. Just a thought. Dawn

Hi Linda, I get the same episodes. I have went to the ER a couple times. They do an EKG, some blood work and tell me to see my regular physician. My doctor says when we have such a large release of adrenaline (autonomic storm) we frequently have excessive urination ( I also get diarrhea). He says those are normal responses to the hormone as is our tachycardia and flushing. I know what an awful feeling it is, I'll jump up and say here it comes. It lasts 1-4 hours, then I'm usually so exhausted I sleep. I really hate it when I'm alone or when it hits during the middle of the night. I no longer go in when it happens. It's never helped just caused more stress. My diet is terrible. I did see a dietician and she said we need 50 grams of protein a day. I don't get close to that. I was trying instant breakfast a couple times s a day but have fallen off that wagon. I think the episodes are random, I can't seem to correlate them to anything. Sorry this is happening to you. Dawn

Thank you Blackwolf & Morgan, I have asked my husband to go to marriage counseling, his response was a big NO. He thinks it's a bunch of bull___. He has this "warrior" attitude about everything. Separation would be like the end for him. He would just move on. My parents are dead. I do have a sister and a brother who would always be there for me. My brother who I am closest to lives 350 miles away. Sometimes I think with all this time on my hands and no energy to do things makes me think way too much. Our marriage is not something we can really discuss unless I have a plan, he would just say "what do you want me to do?" It's just such a hard adjustment because I was always so independent. I never asked anyone for anything. I am just so frustrated with the helplessness I feel. Dawn

Just wondering how everyone copes with being ill and still being part of their family. I am starting to feel like a burden. I have thought about getting an apartment by myself just to free everyone up. I also wonder if it would benefit my health also by eliminating alot of stress. I really feel like my husband has had his limit in dealing with me being ill. Our adopted son is 14 and he would do fine with his dad. My other 2 boys are 23 and 25 so they are independent. I don't want this to sound like I want pity. It's just I don't feel like I belong here anymore. We were always active as a family. I know I'm depressed. My psychotherapist says "situational depression." She suggested I live alone in fact. She has met my husband. He is a controlling person, very intellectual. I think he feels helpless that he can't "fix me." Our relationship has really deteriorated. I feel like he's more of a dad figure than my partner. Has anyone divorced after getting this illness? I worry about the stress of divorce. I get anxious thinking about being alone and sick. Don't know what to do. Any "wisdom"would be appreciated. Dawn

I have episodes of nausea, sometimes for days. Zofran works for me. I do have delayed gastric emptying which I think plays a huge role. My nausea got much better when I saw a physical therapist for vertigo and she did a treatment where they shake your head and watch your eyes through these goggles. I can't remember what it is called. It has to do with these crystals that can become loose from your inner ear and float around making you dizzy and nauseated. Is your balance impaired? It really helped with that also. Just a thought. Dawn

Love the humor in the posts. I have the same problem, used to be a mall junky, now I seldom go. I had this problem at work with the flouresant lights. My husband said the lights "pulse" he said to put a lamp on my desk with a regular bulb and that would help and it did. I think we are so sensitive to everything. I have some weddings coming up and just dread the noise and stimulation. But I'm becoming so isolated that I am going to make myself go. I have found that otc dramimine seems to help. Dawn

Hi, Almost 50, in January. This past year has been the worst. Had to quit work. Do notice the tachycardia and syncope are better. I now have episodes of bradycardia in the 40's which I think makes me feel worse. I have more fatigue, headaches, nausea, slow digestive emptying, hot flashes, general flu like feeling, muscle aches, shortness of breath, depression than I have ever had. Sorry to be so gloomy. It's been a horrible year heathwise. Dawn

Sun, I know how debillitating nausea can be. If you have a high heart rate for long periods of time that can make you nauseated. Think of the runners who vomit at the end or during the race. Being dehydrated can also make you nauseated. Are you keeping a log of your heartrate? Do you have someone who can check it while you are sleeping? When I was first diagnosed my heartrate never was below 120, usually ran 140 range all day. I felt nauseated all the time. A lose dose beta blocker (inderal 10mg) took care of the tachycardia. Lexapro made me nauseated also, all the SSRI's did. But it does get better as your body gets used to it. Have you tried anything over the counter for nausea? Doctors seem to think when we have a fast heart rate it is due to anxiety and stop there. Did the cardiologist do any testing? I went through that for a couple years until I had a tilt table. I would guess your cardiologist does tilt table tests or knows someone who does. I think you should make a list of your symptoms by severity. Tackle each problem one at a time. Finding a good internist would be where I would start if you have health insurance. Staying with one physician who sees you when you are symptomatic is important. If we go to alot of doctors they tend to just pass us along, I think seeing the same physician helps them address our issues and access us much better. Wish you luck. I feel for you. Dawn

Frustrated is one way to put it. Yes I have difficulty walking and standing (ex:grocery store lines). It's one of those conditions that they can't cure so it's kind of up to each of us to find things that work for us. Medications seem to work for awhile then lose their effectiveness. I am so sick of being sick. I feel like a drain on my faimily. They come home from doing something and I'm in my usual spot on the couch. I can no longer drive either. To lose our independence is the worst. I have found I have an occasional good day and then I tend to over due. I understand your frustration. It may be helpful to journal what you eat, your activities, the weather outside (barometric pressure seems to have some effect) and see if you can find any thing that is correlations. Good Luck- You're not alone. Dawn

Linda, So happy you found a knowledgable physician. My internist is a God send. It helps so much to have someone who takes us seriously. Don't worry about the testing, it's usually not as bad as we anticipate. Plus the technicians are right on top of things, it's what they do all day. Try not to even think of the tests til you get there. The upside is you will get some answers which makes any test worth it. Dawn

Thanks for the info Dawn

Michele, I understand how you feel about not going anywhere. The more I stay home, the more anxiety I have about going anywhere. I had to quit working in October and it has not been good for me emotionally. I MAKE myself go do something (shopping or lunch) about once every 2 weeks (which isn't enough). It helps if you go with someone who has a sense of humor and takes our symptoms lightly. I have a friend who I will say "I feel dizzy" his response is "How can you tell?" I've had to lay down in stores with my heart racing out of my chest and everyone walking by me but I got through it and people have been kind. It's always hard convincing them not to call an ambulalnce. My husband always preaches, crank up your sense of humor and I think he is right. I'm not minimizing how you are suffering. I am so depressed sometimes I can hardly get out of bed. I no longer drive because of syncope. But I know spending alot of time alone isn't good. People need people. As far as exercise, I have good intentions. I don't follow through. Don't give up on recovery, I was really bad 11 years ago for 2 years. Then I started working part time then full time for the next 9 years. Have you tried any of the SSRI,s sometimes they help. I'm still counting on a remission again this time. I picture myself healthy and active. Don't feel alone or like a whimp, this is a difficult condition to deal with. Don't be hard on yourself. Believe in yourself and treat yourself with only kindness. Dawn

My Dr. has suggested possibly trying cymbalta. Has anyone had an experience with this medication? Dawn

Hi, I had very low BP and tachycardia throughout my pregnancy. Also vomited everyday. Fainted several times. I wasn't diagnosed with POTS at the time. They said an epidural was out because of my low BP, I had a normal vaginal delivery after 24 hours of labor. Ben weighed 9#3 oz. I fainted several times after he was born while in the hospital. I had alot of post partum depression and didn't feel well for a long time after. As long as your heart is healthy I think you'd do OK with labor. My close friend does all my anesthesia and he did give me some gas at the point I had to start pushing. Don't really know what your symptoms are. Dawn

I spoke with Morgan. She said she is just "fried." She is too tired to post so asked me to pass on that next week will be difficult, Jake will have biopsies, an MRI and probably a PET scan. She will post again when she knows more. It's going to be a stressful weekend for her so keep her in your prayers. Wish we could do more. Dawn

Morgan, Reflect on all you have been through and survived. You can be strong, your spirit is still strong, I sense that in you. You will be strong for Jake. We are here for you. Lean on your husband and all of those you have let lean on you. I know how hard this must be. Sometimes you wonder just how much we can take. I wish I could take some of your pain for you. God Bless You and Jake. Dawn

Hi Linda, I can't believe your bp got they low and you stayed conscious!!!!!!!!!!! Florinef is a safe drug, it's a type of steriod. It helps our body hold in the sodium so our bp stays higher. When I took it I didn't have any problems except that my potassium got low. The doctor probably is just focusing on your BP and syncope now so you don't faint and injure yourself. I'm sure she will follow up with more of your symptoms when you have a retun visit. The problem is there aren't alot of solutions to our symptoms. I don't know what "natural stuff" you take but you need to be careful mixing some of the natural medicines with the florinef. Believe me I know how it is to leave a doctors appointment disappointed. I'm sure we've all experienced that. We all just want a magic pill that will make this all go away. Dawn

Morgan, A prayer from me to you Dear God, May your light burst forth within me, to bathe my inner self and shine through me to bless my son Jake. Amen Dawn

Hi, I've assumed autonomic neuropathy and dysautonomia were the same, whever I see my internist he writes one or the other for my diagnosis. I was diagnosed at age 39 but think I have always had POTS. My doctor says when I was younger I could just tolerate the symptoms better. I can relate with the gastroparesis, I drink alot of protein shakes and take reglan if I'm going to eat food. Karyn, I am now 49, I actually was doing pretty well until last year when the symptoms became really bad again. I had a hysterectomy when I was first diagnosed for fibroids. I have been on estrogen therapy until October. My physician thinks now maybe my vessels will harden. He describes them as rubbery like a babies. Dr. Low says it's just a labile autonomic system. They both believe as our arteries get harder our symptoms should improve. I'm thinking maybe that is why my bp got high on my tilt table test last week because they are getting firmer. I am getting less syncope. I hope they are right. Who would think we want to get old But if it improves our quality of life I'm for it. I think my worst symptoms now are the fatigue, nausea, imappropriate sinus tachycardia and just a generalized flu like feeling. The situational depression doesn't help, I had to give up my school nurse job in October. I miss it soooo much. I notice now have less of a startle response like I did when I was younger. For me the symptoms have waxed and waned, I did really well for 2 years on Prozac then it stopped helping. Lexapro worked even better for 2 years then it didn't help. I haven't been on an SSRI now for a couple years. I did try Lexapro again this summer but couldn't tolerate the GI side effects. 4 years ago I had no side effects at all. Go figure. It's great to have you on the forum Karyn. The drug that is recommended now is mestinon instead of midodrine. Haven't been able to try it yet because my sodium stays too low. Dawn PS I'll turn 50 in January. Maybe it will be the best birthday ever.

Morgan, Go to google and look up spiritual healer + washington. That's how I found the 2 around here that do reiki. Also if you have a natural health food store they probably have some names. When I lived in Seattle I worked for a Dr. Bagnal he was a retired surgeon who only practiced alternative medicine. Hair analysis, chelation, laitrile for cancer. He wrote a book and went to Sweden to teach every now and then. He was from Wenattche(?spelling). I loved that guy. Dawn