Broken_Shell

Hi, I came across this article the other day and thought it was well written and gave a good overview for individuals with both medical and lay background who weren't familiar with dysautonomia... http://www.supportdysautonomia.org/pots.html I am glad that you have an open-minded PCP who wants to better understand your condition. ~ Broken_Shell

Hi, I know we've briefly discussed hormone before... I have had problems with hormones (measured blood levels as well as amenorrhea, spontaneous cycles, anovulation, etc.) since developing dysautonomia. I am 27 and trying to find a HRT that agrees with my body and does not involve menstruation (my autonomic system cannot handle the blood loss and prostaglandin production). I am familiar with the theories you've mentioned because I have wondered about them myself... I just rationalize it saying that my body is so autonomically dysfunctional and weak that it is just ensuring that I am infertile by having my hormones out of whack. I previously had regular cycles, but things changed dramatically since developing dysautonomia. Wish I had more answers, but I offer my support! ~ Broken_Shell

Hi Erika, I had a "virus" 7 years ago that preceded my dysautonomia. It was about 6 weeks of fatigue and swollen glands in my neck, but I never fully recovered and felt "right" afterwards. Since then, I have become gradually more and more disabled by symptoms, to the point that I am now. I would estimate that I function at about 25% of a "normal" level if even that - I had to leave graduate school 2 years ago, and am now unable to care for myself on a daily basis. I am glad you posted though because I have been wondering the same thing... my days are bad and worse. I wish I were exaggerating. I have maybe about 1 hour total cumulative time each day that I can minimally function, and any time I attempt to do something I can do it for maybe 5 minutes max before the dizziness and other symptoms require me to stop. These days, I fight to brush my teeth and wash dishes 2 minutes at a time without having to kneel on the floor. Someone has to pretty much be with me at all times. I am actually looking into home care beginning in the Fall when my caregivers, who are teachers, go back to work full-time. Like you, my small periods of minimal "improvement" are sporatic and my variable symptoms fluctuate throughout the day for no reason, although I tend to be the worst in the mid-morning. I also have hypoglycemia and myofascial pain that complicate my days, but I have yet to really see any improvement or stability in my condition since developing dysautonomia. I hope that your rough day has improved some. Hang in there! Feel free to PM me if you need a shoulder ~ Broken_Shell

Hi, I am so sorry for what you are experiencing. The crashes are so much harder to accept than the improvements, not matter how large or small they are. I wish that I could offer you good advice, but hang in there and do anything that you can that makes you feel better and helps your body manage better. I will keep you in my thoughts and prayers. Like Firewatcher said, we are in boats along side yours and will keep bailing ourselves and each other as best we can... be scared and have a good cry of devastion and frustration if you need, and then promise yourself that you will not give up. I've been declining for the past several years and especially the past 24 months, so I know it's hard both physically and emotionally, and I am here if you need a shoulder to lean on... or an extra bucket! Much Support and Understanding, Broken_Shell

Hi Jan, I don't know if I'll be up to attending this month. I tried the past two and had to leave after an hour, but let me know if you find out the topic for August. I think if you leave a message for Dr. Barboi's nurse she can get back to you with the information. Thank you! ~ Broken_Shell

Hi Jan, I can relate. I don't have this happen as often as I did when I first developed dysautonomia, but this is what I experienced... - A trembling or quivering feeling in the base of my head where my head meets my neck (but deep inside at the actual junction); I described it like there were wind-up teeth chattering back there! - An abdominal trembling that occurs on bad autonomic days with eating; almost like my insides are so over-stimulated and stressed by digestion that they are shaking. It sometimes extents to my extremities, and if someone lays next to me they can sometimes feel it. I don't know what to make of it, but it's always good to hear others experience similar things though. ~ Broken_Shell

Oh Rene, I am not up to writing much, but thank goodness someone FINALLY took you seriously enough to admit you and take a look! I am glad they determined the cause of the I symptoms.... but now to treat it is another battle. In terms of the iron deficiency, be sure that you get that colonoscopy done to check for anything going on there. Have you had the occult stool cards to check for blood loss in the stool? The iron can cause a lot of constipation and GI upset, so start slowly with that, and as someone else suggested, take it with orange juice if you can (just be sure it is not the OJ with added calcium which would interfer with absorption of the iron). I also have a speckled ANA. I have had 3 doctors in the past month tell me to re-consult with a rheumatologist because they feel like with all of my symptoms, there must be something rheumatological going on. I have been worked up multiple times over the past 5 years with no specific findings. Good luck honey - hang in there. I am sending prayers and a smile! ~ Michelle

I've had it multiple times. After the injection I had a facial flush and then felt some extra thumps in my chest and a little jittery for about 20 minutes. Good luck!

Hi, I live in Wisconsin and just got approved for a wheelchair at total coverage through Medicare and Medicaid. I worked with a company that processed everything through my insurance after I submitted my doctor's prescription and diagnosis information. I didn't pay anything up front and the company representative was very helpful in showing me wheelchair options and talking about coverage. I just got the news about the prior authorization last week, and hope to have the chair by early August... and yes, I got to choose a color and I went with green! ~ Broken_Shell

Hi, You might want to read through this recent post.... http://dinet.ipbhost.com/index.php?showtop...mp;hl=neck+pain ~ Broken_Shell

Hello, I have tried two different brands of calcium citrate, and within 15 minutes of taking a tablet I am starting to get sleepy and sedated feeling. I tried taking it at night, and after a few days I was still feeling this same way when I got up and had a hard time waking up in the morning. I really sholud be taking calcium supplements because I don't have any dairy in my diet. I was diagnosed with osteoporosis at 22 years old. I also take the prescription 50000 IU vitamin D twice monthly, and recently had my blood levels of both vitamin D and calcium checked, so I know they are not high. Has anyone ever heard of or experienced this? I know that with dysautonomia we seem to be incredibly reactive and sensitive to everything, but I feel like this is just ridiculous! Any ideas or thoughts? Thank you! ~ Broken_Shell

Wow... does your doctor want to repeat the test and see if the values of being so elevated are replicated? What was your blood sugar with an insulin that high? Were you having symptoms? Did she check your proinsulin and C peptide at the same time? When do you have to make the decision about repeating the 72 hour fast? Do you have a home glucose meter? How often do you go low and does it tend to happen at a specific time of day? Sorry about all the questions... I will keep you in my prayers. I am still battling my hypoglycemia on a daily basis, but the endocrinologist has stopped investigating for the time being. Keep hanging in there! ~ Broken_Shell

Forget a whole day... I'd be thankful for an hour! I have not felt normal for over 7 years since developing dysatuonomia. I am the same as others who have posted. I lay on my couch and think "I'll just get up and do this or that." Then I stand up and reality hits and I realize that I won't "just" do anything, and I will fight my body every step of the way for every little thing that I do. It blows my mind how disabled I actually am, especially if I look at healthy 20 and 30-something year olds. For instance, my sister woke up and had 4 episodes of diarrhea this morning, but she still went about 90% of her normal daily business. In comparison, I can barely walked from the bathroom to the couch just because I had a normal bowel movement. Even though I don't readily think of myself as disabled, I would estimate that I function at less than 30% of a level of normal. ~ Broken_Shell

After you have checked the expiration dates on the strips, are you getting the same readings? What do you mean by "high"? Are you diabetic? Why did you initially use the glucose meter? Adrenal fatigue is usually associated with hypoglycemia. ~ Broken_Shell

Were these pm salivary cortisols or samples taken throughout the day? Let us know when you find out what the abnormalities were. ~ Broken Shell

Feeling accepted is always validating and reassuring. I am glad that you have some health care providers who "understand". I hope that the allergy regimen takes a new turn for the better soon! ~ Broken_Shell

Usually it is recommended to take thyroid medications in the morning because they can cause insomnia if taken at night. If you have a hard time waiting to eat after arising, maybe set an early alarm and take it before getting out of bed.

Does anyone here use salt tablets? Can you please share with me the brand/type that you use, how you use them, and any positive or negative effects you have noticed? Thank you in advance! ~ Broken_Shell

Hello, I hate having a BM... it takes everything out of me and leaves me feeling like I just ran a marathon or something. I usually have to get laying down as quickly as I can make it out of the bathroom, or actually crawl out to the couch. I also frequently get nauseous after having a BM. Things are more tolerable if I pass small volumes of stool at a time, so I do the best being somewhat constipated. You are not alone... I wish I had some advice to offer. The only thing that helps me some is taking an ice pack and cool washcloth into the bathroom to put on my face and the back of my neck. Else sometimes it helps a tiny bit if I drink cold water while in the bathroom. ~ Broken_Shell

Thanks for posting

Hi Cat Lady, Here's my pharmaceutical expertise... meds are considered expired when they have lost 10% of there potency. In other words, they are still 90% potent. The pharmacy is legally required to put an expiration date of one year on dispensed meds, unless the date on the package from the actual drug as a sooner date. In other words, even if the date on the manufacturer package is 5 years from now, the pharmacy will still put a one year expiration date on it. There are two concerns: if the medication will still be helpful, and if it will be harmful. Most tablets and capsules are unlikely to harm you if you take them after the date, but they might not help as much. However, since the drugs are chemicals and can not be verified to be stable after the expiration date, they may undergo some type of chemical degradation that could harm you. If they are say 6 months past the date, then they are probably still safe. Longer than that and you may to taking a chance. The pharmacy keeps very thorough records, so if you contact them, they may be able to check the lot number from which your medications were dispensed and give you some more accurate expiration dates. However, with things like Nitro and EpiPen, I would definately advise that you closely follow the expiration dates since any loss of potency could render them unable to save you in a life threatening situation. Happy cabinet cleaning ~ Broken_Shell

When I was first diagnosed I wasn't feeling well, but I could still attend school, drive, exercise, care for myself, etc. That was 7 years ago, and I that I didn't feel well back then, but how I was would be 100% improvement from where I am now. I am unable to care for myself consistently or leave the house. When I do go out, it is just to sit in the store and wait while my family does errands for me. For the most part I can't drive, do any type of activity, do things around the house, etc. However, my situation is complicated by daily episodes of hypoglycemia and severe myofascial pain and headaches. So of my autonomic symptoms have improved in the past 7 years, and some have worsened. I don't think that there is any good way to know what will happen, you just have to hang in there, don't give up, and make lots of lemonade with all those lemons life gives you! ~ Broken_Shell

Hi, I agree that many of our "other" symptoms are probably related to autonomic and generalized neurological dysfunction, but I do feel that doctors are too quick to blame all of our symptoms on this condition as well. At any rate, here is a list of some of my "atypical" symptoms: - Strange sudden feelings of falling, tipping, gliding, etc. I have a lot of proprioreceptive disturbances. - Pressure in my head and wooziness associated with GI activity: eating, BM, passing gas, even stomach growling - Excessive "thirst" and urge to drink water, especially in the am - Myofascial tightness and pain, especially in my head, face, and neck so bad that I can not bite or chew and have to puree my food - "Auras" that occur without migraine - Feelings of tightness and numbness over various parts of my head - Extreme heat and sun intolerence; even if it's not hot, to have the sun directly on me causes bizzare symptoms and feelings - Above even in relation to being within a few feet of a burner that is hot - High serum creatinine and albumin - Low BUN - Multiple daily episodes of sporatic, non-fasting hypoglycemia unresponsive to dietary changes - GI "flares" of nausea, excessive bowel movements, and increased autonomic symptoms: cold sweats, dizziness, chest symptoms - Extreme sensitivity to medications and supplements - Temporary secondary amennorhea and large increase in symptoms with resumption of hormonal fluctuations - Daily feelings of being "floaty" or "spacey" as if there is not enough blood going to my head in the absence of BP fluctuations That's all I can type for now. ~ Broken_Shell

I am glad to hear the good news . I will keep both of you in my prayers for a strong recovery and positive days ahead! ~ Michelle (Broken_Shell)

Hi, I feel this way sometimes as well, but you have to remember that anyone affected by this condition is being asked to handle a lot more than they ever thought they would. I am 27 years old, and I can no longer drive, be left alone without someone calling to check on me, care for myself on a daily basis without help, etc. I used to be active, energetic, and a very motivated and ambitious person with a lot of potential. Now, it is a good day if I can leave the house to go sit in the store while my mom does errands. All of our families and friends get over burdened, and they don't know what to say to us. They are scared and confused the same way we are. I have been ill for 7 years, and we are continually facing new challenges, disappointments, and frustrations. Things at the beginning were a lot harder because my family didn't realize that I wasn't exaggerating or at fault for what was happening to me, and none of us could understand how these things were happening to me for no apparent reason. Is there still tension and frustration over the independence and oportunities lost for everyone involved? Yes, and that is to be expected with any chronic illness. Just try to let your family know that you appreciate their time, and when you feel guilty, think about what you would do if the tables were turned. In reverse circumstances, I would care for my mother and give up my "normal" life for her in a heart beat, if I had one. So, feel guilty, feel sad when you need to, but don't forget that everyone is doing their best and have faith that somehow it will be good enough and see you through! ~ Broken_Shell