Glad it's not just me...
- I finally found out that I have dysautonomia a few years ago. That was one of the happiest days of my life...to know that I wasn't imagining all the aches and pains and ailments and that I wasn't crazy. It really is hard for someone who doesn't know and understand to even comprehend what we go through. I was on 13 pills a day. Several Rxs and some vitamins. I did that for about 2 years after being diagnosed and, for me personally, I feel like the side effects to all the meds were worse than the actual disorder. I took myself off of all the medication and haven't taken anything for any of my symptoms in several years now. I have just learned how to deal with it all. Some days are really hard and certain time I break down and cry or want to go hide in a closet. I know there are things that I could/should be doing differently and I would feel better so I think it is just a different walk for each and every person. I think that some things that help one person might not help the next so I agree with the ones who say "Find a good support person" that truly helps. I also find that having to get up every morning and get ready and come to work helps me feel better as the day goes on. I certainly have days where I feel like I need to be on disability because just the task of getting out of bed is painful. But I just keep on moving and wake up everyday praying for a good day.
- —Guest Cassie
Thank God for good Insurance
- I suffer from Dysautonomia, and have for three years now! Thank God that i have good ins. Im unable to work because of my systoms are very severe. I stay at home most of my days at the age of 48, But my Disability pays really well. Thats something that a lot of people doesnt know that you can go on Disability for Dysautonomia. And it helps with one less worry in your day and that is money!
- —Guest Bambi in Florida
Feeling Great
- After suffering through 4 yrs of Doctor visits and unending test that revealed that I was a puzzle, I was diagnosed with Dysautonomia- POTS by an outstanding neurologist at the U OF U, and sent to Boston to the autonomic Lab for the final conformation. A once 15 mile a week runner, I found it more and more difficult to get out of bed let alone climb the stairs each day. In my research of this disorder I found the story of DR. Ben Carson. A renown Neorosugen at John Hopkins. Long story short... He spoke of Glyco- nutients and their support of our immune system and cell to cell communication and how when our immune system is recieving these esential surgers it can funtion at it's full potenial. OK.. I started on these glyco- nutients 6 months ago and started feeling better within the first week, so I stopped for a week and started going backwards. I have been on this product for 5 months now and i have not felt this great in 4 yrs. I want to tell everyone. This works.801-719-0454
- —Jeffreymk
various frequencies cause it
- I have blood pressure plummeting, blood sugar surges, heart palps, sweating and chills, and many more dysautonomia symptoms which appear when I am in the vicinity of various electrical/ radio/ and magnetic frequencies--cell towers, microwave towers, wifi routers, wireless frequencies, digital frequencies, cell phones, smart meters (wireless utility meters)..... Be careful guys, smart meters are coming to a town near you, so if your symptoms are getting out of control, you might want to check that out. I also have celiac disease and a number of other auto-immune diseases and MCS. I have improved some since going gluten and sugar-free, but a pesticide incident made me really bad again, so also chemicals cause the dysautonomia for me. I have had some success using various supplements--especially B12, calcium AEP, pantethine, and CoQ10. Electrolyte balancing, hydrogen supplementation, and alkaline water also all help.
- —Guest Evie Carter
Finally Found the Right Doc
- I've suffered from CFS, strange pains (fibromyalgia), inappropriate vasovagal responses, and other weird symptoms for 12 years; saw every kind of specialist and was told there was nothing to be done. I finally found a chiropractor who specializes in physioneurology, nutrition, and brain balanced therapies. We found a severe intolerance to gluten, which could be responsible for autoimmune responses. Cutting out gluten, dairy, and taking supplements such as phenylaline, adrenal support, digestive enzymes, etc. has brought about a 50% improvement in just 3 months. Too bad I had to pay out of pocket because insurance doesn't cover this doc. If they did, they could have saved a TON of money over the last 12 years. Totally worth the improvement.
- —Angela_Morrow
dont stop pushing for answers
- I was always treating my symptoms. which resulted in me taking 10 pills aday to treat something that we didnt know the cause of. this has been my life for 7 years. im 20 and i just found out i have Dysautonomia. Its a relief to know its not all in my head, and other are in the same boat, any suggestions for a you girl with this disorder?? jla12990@verizon.net
- —Guest crazy
My Dysautonomia Story
- First I just want to tell everyone that is going through dysautonomia; it is a tough journy but you WILL get through it! I am worse than what I was when I started but also stronger than when I started; I know there are other people out there with it! You will make it through this high hurdle in life though! I have NCS, a lot of symptoms and hard days. Excrutiating stomach/chest pains, stomach aches, nausea, headache, loss of breath, cramps, dizzyness and fatigue are just a few of the symptoms I battle with daily. How I do it? SUPPORT! You need people on your side, so find TRUE friends, family members and others and Tons of sodium and hydration of course. Homeschooling or online schooling, however hesitant you are (like me) at the idea makes it that much easier. When you feel good you can get together with your friends. If you are an animal lover, let me tell you, pets help a lot. But if there is no one else to care for him, make she is he is not high energy. YOUWILLGETTHROUGH!
- —Guest Caroline
dysautonomia
- Has anyone here ever been tested for any autoimmune illness? I have Sjogrens syndrome and it causes all kinds of issues. muscle pain (fibro) ibs I get tachycardia sometimes as well. Its worth looking into.
- —Guest Michelle
not crazy
- I thought I was going crazy but a neurologist who finally knew exactly what was wrong with me. I take Flornif which is working great. I also have GERD which seems to go along with Dys. Cut out caffeine and all sugars. Take time in the mornings for yourself to adjust. Each day is different. I have found that rainy weather makes my Dys worse so I know these days are bad. Take advantage of the days you feel your best and get out there. Its not the end of the world and Dys will not hold you back. Just learn your good times of the day and bad times of the day. Don't expect to run a marathon first thing in the mornings. Cut out greasy fried foods. Be active, I found Yoga and walking to be great. Also I do great with Reebok balance shoes which help with the dizziness. Hope this helps. Love the support groups!!
- —Guest tonya
son recently diagnosed with POTS
- My 14 yr old son was diagnosed a couple of months ago with POTS. He is having a hard time. Symptoms come and go with no rime or reason. One minute he seems ok and the next he is on the couch or in bed. He suffers from headaches, nausea, abdominal pain, insomnia, rapid heart rate, temperature intolerance, just to name a few. He is on doxepin and many vitamins. A couple of years ago he had similar symptoms that eventually went away after 2 months. There were several short episodes after that but this time it seems like it is here to stay. I know he feels detached from his friends. He is unable to play hockey (which he loves) and hasn't made a complete day in school in a very long time. We now have a 504 plan for him. It may help with homework but not the isolation he feels. Depression is becoming an issue. I am so worried about him. I want to make him better but don't know how. There is now a concern of midochondria disease. Anyone else out there with that also? Thank yo
- —momofPOTS
inapproriate sinus tachycardia
- I have an abnormally fast heart rate. I discovered this at age 25. Also, when I am fairly busy, as when working as a nurse, I can get a temperature elevation above 100F that I don't see in co-workers doing the same level of activity. Exertion in a hot environment is very difficult, with a sense of becoming mentally vague. Nothing has ever been found wrong with my heart. I seem to have not much else wrong with me. However, I fatigue easily. Walking up stairs can become overwhelming for me when others older than me are having no problem. I stop and tell them to go on ahead while I catch my breath. That symptom I noticed as young as age 19. Doctors seem to have absolutely no interest in my reports of this "condition." I am discouraged by that.
- —Guest Rose 76
age
- you talk about going to the MVP center in Birmingham, they do not take any one past the age of 30 i believe, they would not take me when i was 62, guess they think anyone that old doesn't matter anyway but thats far from the truth. my mother will be 102 in aug. and she enjoys her life and still lives by herself. i take ultram 2 times a day and it helps with the hopeless feeling and lack of energy, plus a lot of omega 3's magnesium, and a host of others. dR. rOGER mURPHREE in Birming. has helped me also their no. is 879-2383, they will talk to you on the ph.i disagree with the lady that says to drink gator aid it has tons of sugar in it and also its acidic. what all of us need is to get our bodies alkaline. i drink ionized, alkaline water from a water machine the Japenese people built, it hydrates your cells so fast, unlike reg. water. and all bottled water is acidic. Get a chlorine drops tester and check your water and you will see. My no. is 205-629-7210 if you are interested .
- —Guest madonna cole
dysaut.chronic fat. fibro.
- Sorry to hear so many sad reports, i to have had all these same symptoms, with little results , and a lot of pres. meds. they made me feel out of control one day i saw a program about all these same symptoms and this mans name is Doug Kaufman, he has a show called know the cause, it comes on t.v. dish at channel 262, or you can go to know the cause .com and learn ever thing i did. it changed my life for almost 2 yrs, then i wavered off the program and now i am having problems again. i was able to get off zoloft, ambien, atenenol, ativan, neurotin,clonopin i only took a few times for panic attacks, i changed my diet elimanited all sugar, ate fresh foods no processes organic when i could afford it. stay away from paints with chemicals, lotions that have paba in it and laurel sulfate, just look at the web site and you can see for yourselves. Those of you that are having these problems ask yourself thesse questions. Did i take antibiotics? have i been exposed to mold or mildew? just try!!
- —Guest madonna
My solutions
- I have been dealing with this for most of my life. I was thrilled when the doctors finally stopped saying that it was all in my head. And even more thrilled to find sites explaining that I wasn't abnormal. My symptoms are insomnia, bowel "issues", dizziness, pounding heartbeat, physical anxiety, chest pains, depression, fatique and panic attacks. What works for me is staying away from alcohol, walking (about 3 miles a day), healthy eating (lots of fruits and veggies, little to no sugar or processed foods), a strict sleep schedule, and acupuncture. I have an amazing acupuncturist who has pulled me out of the hole of depression and always aleviates my other symptoms with body work and herbs. I know a lot of people think that acupuncture is mumbo jumbo, but unlike western medicine, everythhing she does helps and has no side effects. After the mounds of meds I have been prescribed by other doctors, I find a solution without drawbacks to be life saving.
- —Guest Kendra
Help!
- I have dysautonomia and its ruining my life! If any teens read this and wanna talk id appreciate it! My email is irishdancer.kaylee@gmail.com thanks!
- —Guest kaymarie
