bellgirl

Jen has a good point. Anxiety has always seemed to be an issue for me. I do cry more easily, but is that my beta blocker or the dysautonomia? When I am upset, my chest tightens, and I have trouble breathing. When I'm happy and excited, that can trigger symptoms, but when I'm happy and content, then I feel better. But I can come down with symptoms, too, at any time, but my emotions do affect the severity...

Tell your doctor about the white stools. That definitely needs to be addressed. Fatty stools, shout your liver to me...just saying...YOGURT, and whoever mentioned the BRAT diet, that is great for diarrhea..., so sorry...sounds like you might need a lot of fluids, too. So sorry you are feeling so badly. I will pray for you!

Katybug is right...Our blood is very thick due to hypovolemia and dehydration, and it is also very hard to find a vein when you are dehydrated. I used to start IV's on children as a nurse years ago, so I know from experience! My blood has been thick for years and I always wondered why...now I know!

My dad had hyperbaric for the piece of bone in his head that was being rejected by his body after cerebral aneursym surgery. That was 25 years ago!! It didn't work, but they were trying to get more oxygen to his skull bone to prevent putting a plate in his head instead. Needless to say, he ended up having the metal titanium plate put in it's place and lived for 12 more years, and even went back to work!! Gotta love his determination Is the pooling and neuropathy so bad that they fear it is cutting off the circulation/oxygenation to your feet? How did they determine fatty liver disease? I had hyperlipidemia at an early age, now off meds, because of side effects (not being able to walk to the BR), and because of diet (or lack of one...lol), and dysautonomia my cholesterol levels are better? Just wondering... I'm glad you like your doctor. I like my doctor's too, and that is half the battle!!

I have to say that my Beta Blocker, even cardioselective has affected my breathing some, more initially with my body getting used to the drug. I have the option on getting on a channel blocker, (according to my sleep apnea doctor), if it gets really bad, but I think there are more side effects with that med, so I opted for the cardioselective BB. If I drink too much fluid, or overeat, this also affects my breathing. If I overexert myself, or am having problems with my asthma, it can also affect my breathing. Sitting slouched, which I am very guilty of doing, makes it harder to breathe, as well. I also can't be in one position too long either. My Cpap has helped my breathing while sleeping, immensely. So that being said, there are other factors, too, other than medication...

I read a lot, play with my dog, make jewelry, and spend time on the computer during the day. I am fortunate that my husband works at home most of the time, though he is working away today. This is a scary illness, sometimes, but the more knowledge you have about it, the more at ease you will become, and when you realize that someone is just a phone call away, and any of us would certainly understand what you are going through on this site, as well, just know we are here for you; you are not alone. I'll pray for you, because that is how I handle everything in life! Hang in there; we all have scary times...

I would go for the vertical instead of the horizontal, if you can, because people on this site have said that they feel gravity would have diagnosed them with Chiari. Is it more expensive to get it this way? Just curious...If you are ruling out Chiari, it makes sense to me, (as a retired nurse)

God knows I love to sing, and I manage to get up there because He gives me the strength to do it, but I'm exhausted afterwards, and Mondays are my rest days; used to be the day I cleaned. Oh well, dust bunnies are my friends!!

There are head ache specialists, but a neurologist would be your best bet. Getting an MRI is a good start, when you have headaches to rule out more serious reasons for them, but I believe they can be triggered by hypovolemia with POTS or hormones. I had migraines before menopause, but now I have more stiff lower head and neck pain, but I also have kyphosis, too, which exacerbates the problem. Beta blockers work well for regulating heart rate with sinus tachycardia or arrhythmias. It has made a world of difference for me. It took a while to find the right one. I lie flat in bed, but have a firm foam pillow to lie on, and that helps with the discomfort in my head/neck. Welcome to the site....hope your MRI goes well

After reading all of these answers, it is plain to see that there are so many levels to this illness...I think it is wonderful that you can spend 6 hours at the zoo. I love animals, too. I used to be the energizer bunny, but I have learned through totally crashing and (almost crashing my car), that I need to listen to my body and know my limits. On a good day, my limit for being out is 2 hours. I sat on an overturned bucket at Lowes shopping with my husband the other day, after finding lawn chairs twice to sit in before that...it was not a good day, and I shouldn't have insisted on going to buy spring flowers. My doctor always tells me I should never push myself to exhaustion, but I try to be as active as I can. Some days I have to stay home, some days I can go to the grocery, some days I go to the doctor (I'm tired of this one), other days I go to the YMCA to exercise for 45 minutes, usually twice a week, some days I walk my dog short distances, some days I go to choir and sing (Love this one). You do what is best for you!!

Maiysa, I'm so sorry that you are feeling badly We all have those days, and I know it can be frustrating. I had some neuritis on my right side for about 5 years, that made it hard to sleep at night after a virus I had 14 years ago, when I first started having symptoms. It finally went away, but I have to admit that just two nights ago, I was achy all over, like a flu, that kept me awake most of the night, but I didn't have a fever, and I did somewhat better yesterday, than this morning I woke up so stiff, I could hardly move, finally worked out the stiffness, and then ended up with stomach pain; but I have finally decided that this illness is just unpredictable!! I have always had a lot of neuro related symptoms from the start, a lot of Multiple Sclerosis- like symptoms for as long as I've been sick. I've never had thyroid issues, though, and never been tested for MCAD, but I do have allergies and asthma, too. Have you been tested for any autoimmune related illnesses? All that bruising concerns me; Did you run into anything? I would definitely let your doctor know about that...Have you had a CBC lately with your blood work? I would ask the doctor to get a platelet count, if I were you. Let us know how you are doing...I'll say a prayer for you, too! I hope you have a better night...

Vision disturbances are very common. To be honest, I have a binocular defect that was caused by a virus that started all my symptoms. Don't give up though, because I finally was able to get some good contacts, after many years of not being able to see properly. It is true that vision waxes and wanes, and some days are better than others. If she has an eye appointment, and her vision is not good on that day, cancel the appointment and make another. I also have constant tearing, which always gives me blurry vision. This last eye doctor was so patient with me, and let me blot my eyes, so that I could see as well as to be expected. I'm so excited that I can see the leaves on the trees again!! Try to be positive, and know that some days are better than others!!

I have a lot of neurological symptoms, kind of like multiple sclerosis, which I thought I had at first, being that I also had a virus that misaligned my eye, (possibly optic neuritis), when all of this began. I have twitching and tremulousness, also. I am dizzy, drop things, and have buzzing, burning, paresthesia, and electric shock like nerve pains. I was just diagnosed last year, but have had symptoms for 14 years now. It is a neuro/cardiac issue for me. I also have Mitral Valve Prolapse, and Sleep Apnea. I also had hypertension for 12 years before being diagnosed with dysautonomia.

Magnesium is supposed to be good for your nervous system, along with the B vitamins, but yes, it is hard on the stomach, and it does decrease your blood pressure. I had more trouble with hypertension, before my diagnosis, and my neurologist told me it is good for the nervous system, too. I only take it once or twice a week. I'm doing the same with the CoQ10, too, because I don't want to be hyper again, but I would rather take supplements than too many medications. I had blood work done for the vitamin D, and that could have been the reason for my fatigue, too, and since my insurance company wouldn't pay for provigil for fatigue, because it is predominantly used for MS, (and they probably don't know enough about dysautonomia), I decided to get more blood work done...so now I'm on 4,000 I.U.'s of vitamin D for a month and than 2,000 I.U. for maintenance thereafter per doctor's orders. I can't take NSAIDS either, and take Naproxen/Aleve when I really need something for pain, because it doesn't seem to affect my stomach, as much. It actually used to be a prescription medication but is now over the counter. It was used for muscle pain, way back when. I took it the first time when a horse stepped on my foot, back when I was riding horses...lol. It worked very well .

I'm using flickr to share a picture from my son's wedding, but I put this website, as a guest, since I'm only sharing pictures with friends and family, but maybe I didn't give the correct information for the website, because I know I was doing it right. So if you could give me the information to share you as a guest to see my picture, that would be great!! Or can't that information be shared? Thanks, Kim

Did you have ice in your drink? I can't drink anything with ice, either. I rarely drink soda. Lemonade is a good alternative at a restaurant. Ginger ale settles your stomach, if you like soda. I agree with the caffeine answer being the culprit. I drink sports drinks, vitamin water and Sobe.

I sleep on my left side with bed flat. I have Mitral Valve Prolapse, and Sleep Apnea. More people have apnea on their backs from what I was told at the sleep clinic. I would wake up gasping, as well. Sounds like you should consider a sleep study. My Cpap machine has saved my life!! I actually sleep now; I was awake all the time without it. Sleeping on your left side is better for your stomach, and I read it is good for those of us with MVP. I was already doing this before being diagnosed!! I can't lie on my stomach; my neck is too stiff, and I feel like I am suffocating

This was so thorough...I'm impressed!! Thanks Rich...When I have a problem with breathing, I do take special effort to concentrate on the way I am breathing, so I get better perfussion, slow deep breathing through my nose and out my mouth (that is how our bodies are designed to breathe). There are a lot of times when I am not conscious, that I am either holding my breath, not sitting properly to get the best lung expansion and perfussion, possibly worrying over something, that I could just pray about, and remedy by releasing some stress related issue that happens to everyone; it just affects us with breathing problems more than someone who doesn't have them. Climbing stairs is very taxing for me, too. I also have Mitral Valve Prolapse, so I am sure this doesn't help matters, along with yoyoing heart rate, blood pressure lately has been somewhat constant, due to B/P medication, though, which I am grateful!! I know that my Cpap has helped me sleep so much better, because of my sleep apnea, along with the small dose of clonazepam at night. Any eating causes blood pooling for me, so I have more trouble breathing after I eat; it doesn't matter what I eat. I can eat better in the evening, because of my nausea in the morning, so that's when I try to eat the most. Small meals during the day...drinking fluids is better in the afternoon, although I force myself in the morning, as well. I can't drink anything too cold, ice in a drink is horrible for me. It makes my heart ache! This has nothing to do with an achy breaky heart...lol I used to scoop out the ice in a restaurant, and then it dawned on me to start asking for NO ice. My son tells me I would be very comfortable with the drinks in Europe...they are room temperature

That sounds a bit high to me, but what is "normal", anyway...lol...Seriously, though...I would think that the 80's would be normal

I have read that marcaine is better for those with dysautonomia for a numbing agent. I'm going on Thursday, and already feel your pain!

Oh my...don't even remind me...I went years without sleep!! It's horrible...wouldn't wish this on a wasp...so sorry I'll say a prayer for you...and your son. I broke my arm when I was 8...that's no fun either Drink plenty of fluids...remember you loose a lot of fluids with those surges, and more when you are awake, too!!

I love my schnauzer, Windy...I just got her groomed short for the summer, but too early (she was all matted because of wearing sweaters this winter); she was shivering when she woke up, poor dog, and she just got over "Vestibular Disease", too! I didn't know whether to laugh or cry; talk about sympathy from her master!! She is still stumbling, but much better, because I had to carry her everywhere, and I'm not exactly stable either...lol . Back to the subject...How are you doing Lemons and Elfie? Any better ...we love you!!

I would imagine that being in a very cold climate causes vasoconstriction of the vessels, which causes less blood flow, especially to your head, if you are hypovolemic, but deficiencies in vitamins or malnutrition can also cause alopecia. It is true that in the winter, everyone's hair grows more slowly because of this. I have very thin hair, worse through menopause, but I thought it was more hormonal for me, but it could have been lack of nutrients, as well, since I had lost about 15 pounds over the years, since I was sick 13 years before my diagnosis of dysautonomia, too.

Hi Bex, welcome to the forum...This happens to me as well...I have a Mitral Valve Prolapse, which can cause tightness, and irregular heart beats at times. But others who don't have a MVP, still have these issues on occasion, so it could just be the Dysautonomia. I have other breathing issues as well, including, sleep apnea and mild asthma, sometimes bladder/bowel issues when my symptoms flare, but no EDS here. Everyone is different, but a lot of us here have similar symptoms. The best thing to do is talk with your doctor about your concerns. You will find everyone here to be very supportive and encouraging, and also very knowledgeable on this site. You will feel right at home here to relate to others who will understand what you are going through

Sorry Elfie, it is hard for others to be understanding, when there is nothing to see on the outside. Just yesterday, I went to Lowes with my husband to buy several things. I had to sit in their lawn chairs twice, and then I turned a bucket over to sit on it, waiting for him. I reach a limit, and then I have to leave. Even watching a movie, I had to squat to get relief from pooling, even sitting down! I still try to function, as normally as I can, though, and I have to say my medications have helped me immensely; I'm a lot better than I was, but it is still a daily struggle, depending on how I feel; I stay at home most of the time, and when I go out I am usually only 5 minutes from home, so even if I get in trouble, I can call someone, or better yet, go with someone. Maiysa, I have a white Schnauzer, btw! She is older and more gray now, but I love spending time with my dog, too!!