bellgirl

That is wonderful Always good to get a ray of hope and sunshine!! I've always exercised my whole life until I had severe vertigo and dizziness, but now with treatment, I also go to the YMCA twice a week on the Elliptical for about 3 miles and walk my dog every day. It does help immensely. Sometimes I really have to push myself to go, but it is worth it. I know my limits and I listen to my body, and I rest when I need to

Like Dani, mine will feel heavy and hurt, especially when I sit too long, (it's the extra fluid with vasodilation, which is caused by some of the medications we take, too). I had this once on the right side of my body, too, after a virus with nerve pain. It took several years to go away; I couldn't even sleep on that side for years after without it going numb, but it is better now. I thought I had MS for many years before my diagnosis. I finally went to a neurologist and had that ruled out just recently, and I have no cerebral aneurysms either, which my dad had; thank God for that!!

Swallowing is part of the Autonomic Nervous System, and ours tends not to function properly. Since we drink more than the average person, too, it is bound to happen more frequently for two reasons. This is actually a normal part of dysautonomia. This happens on occasion with me, too. This is another reason why we would prefer not to eat, too, not even to mention the nausea...I choked on some pills once pretty badly, that I thought I would have to call the paramedics; I would always take several together, and if they are large, like flax seed oil capsules, they can turn sideways . I also had angioedema once, but I think I was allergic to a blood pressure medication I was on...my throat swells on occasion with itching, and I have several allergies with asthma, as well, so yes, it can be scary, too! But the best thing to do is to remain calm, breath through your nose, slowly and know it will pass. Panic attacks, which we are prone to getting also, because of the physiological anxiety caused by the tachycardia, can also cause tightening in your throat, too!

So sorry Lilly; It's hard for them to understand, because it is an invisible disease. I try not to talk about it a whole lot anymore, but I did have him drive me to my doctor's appointments, (which some were 2 hours away), as Tennille said, and had him come in with me, so he would understand more fully what I was going through. I think it helped some...that's what we all are here for on this website to support one another, because you know we will always understand On Christmas day, I was very sick, and my family helped me. My sons even cleaned up the kitchen without me asking, but they are adults now, and they are more understanding, since they don't have to deal with me on a daily basis.

Dysautonomia is the disfunction of the autonomic nervous system, so anything your body usually is supposed to do automatically, isn't working properly. This includes the sympathetic and and parasympathetic nervous systems (which can hardly be contained in a book, in simple terms). This is not easy to understand, especially when the circulation to our brains is compromised by dehydration, (lack of oxygenated blood to the brain)...lol. So just think about it; this includes just about all body systems. When I try to explain it in simple terms to people, who are interested, I go from the top of my head down, and mention all that our body is supposed to do without thinking, heat regulation (pituitary in brain), blinking, tearing, sneezing, swallowing, breathing, heart function, blood flow, elasticity of vessels, blood pressure, endocrine, gastrointestinal and urinary function, muscle and nerve function. It is very complicated, and there are so many doctors who are still researching it all, and don't completely understand it!! I find myself holding my breath for no apparent reason, so I think we all do this without realizing it, then our bodies, the wonderful compensatory functions that we do have, goes in a panic mode to get oxygen to the brain by hyperventilating. As far as sleeping goes, since we are not awake to realize it, our body wakes us up to breath, gasping to get some O2 back into our system; about 30% of us have sleep apnea, so I would recommend getting checked. I went for 3 years without sleeping properly, and I couldn't function during the day. With my Cpap machine at night, I'm alive again, and much better . "Life is not measured by the number of breaths we take, but by the moments that take our breath away." Hilary Cooper

Oh my, I could write a book, but I won't...lol. I've done every exercise known to man. Dancing, (ballet, jazz, tap), drill team, swimming, running, aerobics, weight lifting, softball, hiking, canoeing, scuba diving, horseback riding, tennis and I even went mountain climbing once!...Always on the go

Thanks for the help. I don't have hyperflexion or elastic skin, but I do have the high palate and kyphosis, that is prevalent with Eyler's Danlos; as far as I know I don't have Marfan's; thought I might have other autoimmune processes going on, but I was tested for MS, by my neurologist after my diagnosis, and alot of the tests for that are autoimmune related. I was tested for Myasthenia Gravis, because I have some issues with droopy eye lids, and weakness, but that was negative. I did anticholinergic receptor antibody testing done. (That was before I was diagnoses with dysautonomia). I was doing some trouble shooting with my internist, and she was willing to humor me...lol . I'm somewhat concerned with the Mast Cell issue though, because my mom has Chronic Lymphocytic Leukemia, and although my blood work is negative right now, the hereditary factor is there. So much to learn Actually, the bystolic is working very well for my increased heart rate, rigidity, and tremulousness, and the last time I got off of one to try another, I had a major panic attack So I really don't want to do that again!! I've never had one of those to that extent. I'm functioning pretty well with the meds I'm on right now. I just have to pace myself, rest when I can, stay close to home,(driving exacerbates my dizziness); I do go to the YMCA twice a week, walk my dog, and try to keep my activities to one thing a day, and if I become more symptomatic, I stay at home that day. My boys are grown, and I am not working now, so I play it by ear (Ha-ha...excuse the vertigo pun) and hope for the best Thanks, Kim

I actually fell off a horse once, so that's why I thought this might be CSF, but right now I am wondering whether it could be related to the nerves in my face around my tear ducts, or related to the allergic reactions I sometimes get for no apparent reason, and after reading all you have written and referred to about Mastocytosis, I'm beginning to get concerned about having this, as well. I had angioedema once, and thought it was a reaction to an antihypertensive med, I have flushing all the time, sometimes I have trouble swallowing, and I have various allergies/ asthma, etc. I also have itching on occasion in different places, hot spots, and various fungal infections, too, that come and go. I have to say that I am used to weird symptoms, as we all are, but I've learned to deal with them pretty well, now, at least knowing that it is all related somehow to the dysautonomia. At least there is a reason for these strange things happening, even though the doctors are stlll learning about it all, as well

Thanks Julie and Jangle. I use Pataday at times, when all of a sudden my eyes are full of histamine, but it seems unrelated to that. It happens anytime I go from a standing to lying position, lean over or are out in the cold, too. I am constantly dabbing my eyes with a tissue. I kept thinking I had a CSF leak, because of Intracranial Hypertension before my diagnosis of Dyautonomia. The tears are not normal either; they dry to a crust on the tissue, and I am wondering whether I could get them tested for protein and glucose. They are sticky, too. I have never met anyone with this. I've never read anything about it either, and have become somewhat frustrated with it. I will try to get a presciption from one of my doctors for Ketontifin. I've been told that if you get your tears tested, they have to be refrigerated, and have to be done within an hour. I also need to go to the eye doctor, since it has been awhile since I have been (nobody can give me a proper prescription, because of my binocular defect, and poor circulation to my eyes, when I exert myself). I have trifocal and bifocal contacts and still need reading glasses!!

The cherry hemangiomas we are all talking about are not infectious, just annoying, but anytime you are on antibiotics you are more prone to getting yeast or fungal infections. I would be very careful taking oral antifungals, I did this once for ringworm, because it was lingering, because, as you mentioned they can be liver toxic, and we only have one liver, and a lot of us are on many medications to begin with. My bilirubin was elevated when I was on Zocor, and then I had the weak muscle reaction on that, too, (couldn't walk to the bathroom one night), so I took myself off that med, and try to keep my cholesterol down in other ways, like diet and exercise. Thrush, lillybits, is usually inside the mouth and on the tongue, this isn't even white like thrush; it is red, bumpy, and burns, itches, if I let it go out of control, so I just keep applying tea tree oil, and it keeps it at bay. It also has an odor to it, too.

I know most of us have irritated dry eyes, but when I am really symptomatic, and my head feels full, stiff neck, rigidity, jaw hurts, and dizziness, I end up having uncontrollable tearing, not crying, just tears literally pouring out of my eyes. I also become more symptomatic when I sing, chew, read to much (straining my eyes). I've talked with my doctor's about this, and nobody has an answer for me. Does anyone else have this problem? Does anyone know what causes this? Thanks, Kim

I would go to a better sleep clinic. I only slept for about 2 1/2 to 3 hours the first night, because I didn't take the ambien they offered, (I was already on clonazepam, so I thought that would be enough), then I had a second night, because they said it wasn't enough to fully evaluate me. I think I only had 2 episodes of REM sleep, 92 arousals, 64 hypopneas (small irregular breaths), and 15 apneas. That was why I was constantly tired, falling asleep sitting up during the day, and just plain exhausted ALL the time!! I am so glad they did a second night, because then I was also fitted properly with a full mask (I'm a mouth breather), and one that fits my small face, too! I went to the Sleep Disorder Center of Alabama in Birmingham, Dr. Adams. They are affiliated with UAB. They check for all kinds of sleep problems, not just apnea, so that you are evaluated well. They even measured my O2 levels, movements, checked for heart arrythmias, seizures, nasal pressure, snoring, etc. It was very thorough. They were able to determine my Cpap pressure this way. I would definitely recommend doing this. Joy, Kim

I also have them (the little raised red dots), and yes, they are cherry hemangiomas. But I find it interesting that so many of us have them. They are benign, but I just read that there is a significant increase in the number of masts cells in people that have them. Now broken blood vessels could be lillybits leukemia, too, or if you are having significant bruising, like lemons said, maybe you should see your doctor. The cheesy mouth could be a fungal infection; were you recently on some antibiotics for an infection? or maybe your immune system is compromised? I've actually have had fungus on my lips now for about two years. First I tried vaginal yeast cream on them, but now I am using tea tree oil. It is more irritating, than anything else. (burns, itches, goes away, and then comes back! Does anyone else have trouble with yeast or fungal infections? Told this to 3 doctors now, and they just listen to me...that's it

I was a pediatric RN for 10 years Loved taking care of children. Joy, Kim

Are you on a Beta Blocker? I also agree with rubytuesday! I would call your doctor. My heart rate was 50 with B/P at 80/40, I was so lethargic, fatigued, and crying about nothing, and I knew I was at risk of blood clots or my heart stopping. I immediately got off my beta blocker, atenolol, but than 3 days later was put on bystolic after having severe tachycardia and a panic attack, which is working better for me; but if you aren't on a beta blocker, you definitely need some medical attention!

My goodness, this is like reading a book. A good one, too, because we can always get ideas from others in our own treatment, but everyone is different, and you need to find a doctor you can work with. I was diagnosed with asthma about 26 years ago, was on 5 meds at the time, had severe allergies, and desensitization shots for 4 years. I only use an inhaler now when I need it, but I too, was somewhat concerned about being on a beta blocker, because of my asthma, and sleep apnea, which was just diagnosed. At first I was on atenolol, but it decreased my heart rate and blood pressure, too much. It is short acting with a half life of 6 hours. I also take Lorsartan/HCT for my B/P. When I was between beta blockers, I had a horrible panic attack and was immediately put on Bystolic, which is a new beta blocker that has a 12 hour half life. It is working very well for me. I made sure, being a nurse, that I would only be put on a cardioselective beta blocker, so that I wouldn't have breathing problems! It was a risk I was willing to take, because I was so tremulous, and symptomatic all the time. I felt like the road runner...lol. I also take clonazepam to sleep, and have a Cpap machine for my sleep apnea. I only have trouble with my asthma after I am sick with a respiratory virus, now, so I am much better. Now I wonder about the asthma diagnosis, but my sleep apnea doctor says, if I was wheezing, that I did have asthma

People are always telling me I have cold hands, and a warm heart You all are discussing the Endocrine System, which is extremely complicated, and even the doctor's know it is not an exact science. All of the this is horomonal related, and the two things mentioned here were angiotension and catecholamines. From what I have read and understand is that angiotension is released from the kidney, which not only triggers vasoconstriction and high blood pressure, but also releases aldosterone from the adrenal cortex, which increases the catecholamines (epinephrine) from the adrenals, which causes the fight/flight, jitters, flushing, cold hands and cold feet, because your body is making sure that your vital organs have enough blood flow; so when you eat, in order to digest properly, you need the blood flow to your stomach to digest, so your body goes into emergency or fight/flight mode to do this, because we are chronically dehydrated. That is why it is imperative that we drink lots of fluids, all during the day. There are some that even need IV supplementation in order to be able to sit up, because of this. I just make sure I don't expend any more energy than I have to, and pace myself, so that my symptoms are kept at bay, as much as possible. Wearing gloves, scarves, and socks and tights in the winter helps with this immensely. Also drinking warm liquids, and taking warm baths are great, too!! I am on Losartan and have been for years, probably about 12 years, but to be honest, it keeps my blood pressure down, but once the weather gets cold in the winter, I don't thaw out until May, even being on medication. The flushing, which I always thought was menopause, (symptoms were raging then) along with the palpatations, is what happens after the adrenaline surges that you all are talking about, so you actually work your body up to adversely affect the temperature sensor in your brain in your hypothalmus, which is trying to compensate for the temperature changes going on all at the same time. Note, I haven't even talked about the pancreas releasing insulin to compensate for the simple and complex sugars, while eating, and then there's your thyroid and your ovaries, (testes if you are male) to keep balanced. I guess I forgot the parathyroid!! This is why this is so complicated!! It does explain alot of our symptoms, though, and is very interesting, and I am glad that doctors are doing research, and obviously, we are, too

Vitamin B complex, Magnesium and Flax seed oil

Yes, being on a Cpap machine has helped me immensely. I have sleep apnea, heart palpatations, and arousals that wake me up all the time. I also take Clonazepam. It really makes the difference during the day. I read that 30% of us that have Dysautonomia have sleep apnea. I would get checked for it.

For 3 years I couldn't sleep. It really was taking a toll on my body, and I was unable to function during the day. I was up for hours every night, until I was totally exhausted, then I would sleep one night, and start the cycle all over again. It was my heart palpitations that would wake me up, and also sleep apnea, which I didn't know I had at the time. I now am on several medications, one for my heart, a beta blocker, called bystolic, and one to help me sleep, clonazepam, and I sleep with a Cpap machine. It's amazing the difference this has made for me, but everyone is different. Digestive issues will sometimes keep me up, as well. I would try not to sleep during the day, though, because I believe it always makes it worse. Talk to your doctor, and maybe he will be able to help you, as well. Warm baths do relax you, that was a great suggestion, and sometimes I will get up only after being awake for an hour to read, or write poetry.

I am constantly nauseated, and never seem to have an appetite either, but, I know, to survive, I have to eat:o). I weigh a 105# and I am 5' 5''. I've lost about 10 # in the last year. Protein is probably a big factor, since I am not a big meat eater. I also have GI troubles, so malabsorption could also be a problem. I eat many small meals, because if I eat too much at any given time, I end up suffering the consequences, cramping, diarrhea. I do exercise, because I know I have to in order to stay healthy, and I think it is helping me develop some hunger on occasion, (even though I push myself to do it). Because I don't eat much, I find that eggs are a good source of protein, along with fish, chicken, beans and nuts. Keep in mind that when you drink alot of fluids that that will satiate your appetite, if you have one, so that is probably the reason that you aren't hungry, and if you are dizzy at all, like me, that in itself will put you over the edge of nausea! Even though Ensure is full of nutrients, the iron in that drink could cause stomach issues. I've been told that Boost tastes better, and the colder the better, but of course if you have GI issues, cold can also cause gastric emptying, too:o). I have decided that medicine is an art and a science, and if you are right and left brained like me, , you'll somewhat understand what I am talking about. You know your own body better than anyone else. Experiment with different foods, but change something one at a time, like the doctors tell mothers of babies that have food allergies. Take it as one of life's challenges. I love a challenge Hope you are able get the proper nutrients in the long run.

Life is a gift, but we were never guaranteed an easy ride.... As a nurse years ago, especially of childhood cancer, I have to say that that was the worst situation I have ever experienced in my life; taking care of suffering and dying children!! I have been blessed with two wonderful children, who are relatively healthy, my faithful husband, who takes me to the doctor, (although he doesn't completely understand what I am going through), he tries:o). I have wonderful friends, although I can't always be with them; God is my rock through this; I could never have survived the last 13 years without Him. I have accepted my illness, but there are still days that I don't do very well with it; I try to be positive, because we have a choice every morning to see the sun shining, even if it is behind the clouds:o) Life is unpredictable, but we were never in control of it, even before we were sick, (even though we may have thought we were). I don't compare myself with others, because I am an individual, and God created me for a purpose! I wasn't really sick until my early forties, so in some ways, I had a pretty full life, before I became ill. As a nurse, I have to say that I was very frustrated with my doctors at first, knowing something was definitely wrong with me, and they couldn't help me. Then I stopped going at all, after a neurologist thought I was crazy, which was a big mistake on my part. A few years ago, I developed horrible vertigo, without being able to do anything during those episodes, except vomit and stay in bed; but now after finally finding the right doctors, medication, and Cpap machine, my life is so much better. I'm not cured; somedays I'm sad about that, because mentally and physically, I would have so much to offer others. But then I found the internet and this site, and it has helped me immensely, because I can still help to encourage others and offer medical knowledge. I am very grateful to have some cyber friends, who truly understand my situation completely, and I am very grateful for the support I am getting through others on the internet...Thanks, Kim

I went 13 years without a diagnosis, but to be honest, I wish I had had a doctor to know what was causing all my symptoms, so I could better take care of myself. The good thing is, I had listened to my body and started taking steps on my own to compensate for my symptoms, but after awhile, I was desperate to find a doctor. My husband was only working part time, and we bought our own insurance, which wasn't very good, but I went anyway. He did go full time, just in the nick of time, so that it kicked in on the day I had my colonoscopy, and I was diagnosed a week later, after finding some wonderful doctor's in Birmingham. I had severe vertigo and dizziness, and I was at risk driving, nauseated all the time, couldn't sleep (because of increased heart rate), and had lost 10 pounds. I never thought I would say this, but I am very grateful for the medication I am on to help me, along with a Cpap machine to help me sleep! I'm not as dizzy, I'm sleeping, which is wonderful, and I'm able to eat more and exercise, which I could barely do before my diagnosis.

My veins have always been prominent, and I'm an easy stick They love to see me coming to draw blood or start an IV...My veins are even more prominent in the warm weather. My blood is extremely viscous; almost looks like syrup. If I don't exercise enough, or if I'm on my feet too long, I have some swelling and pooling which can cause some pain in my lower extremities. I've been on medication for hypertension for about 12 years now, and now that I am on a med to decrease my heart rate, my blood pressure stays pretty low, but I used to have low blood pressure, when I was younger, and I'm fine as long as it doesn't go below 90/50. When I am standing still, which I don't like to do, I have to move alot or cross my legs, or even squat to prevent pooling. I also where tights in the cool weather. It helps immensely. I have more trouble in the summer months. So winter is my friend.

I had a virus 13 years ago that misaligned my eye (blurred vision), and caused severe paresthesia and neuritis on my right side, pitted edema in my ankle. I was diagnosed with hypertension and hyperlipidemia then, and MS was ruled out, thinking that I had optic neuritis or ocular aneurysm. I few years later in 2003 I had a virus that caused my eustachian tube to malfunction, and had to have ear surgery. I also have had many strange nerve issues along the way. Then I coughed up blood, about I/4 of a cup for no apparent reason, after running with my dog, bronchitis (I think NOT) was my diagnosis in 2004. I have had asthma for 26 years, as well. Then I started having debilitating vertigo on several occasions in 2009, and was diagnosed with vestibular neurontitis or labrinthitis, and have been dizzy ever since with constant tinnitis. After almost wrecking my car, misjudging curbs, scraping the side of my car and the undercarriage, and having horrible abdomenal pain (Had colonoscopy), I prayed, and found an ENT in Birmingham to get tested for Meniere's, and other inner ear issues, and Dr. Pappas having done a thesis on Autonomic Vertigo, sent me to the Automomic Disorder/Mitral Valve Center of Alabama to Dr. Phillips, and the rest is history. I was diagnosed with Dysautonomia/Mitral Valve Prolapse/ Sleep Apnea last year in August. I have to say that I never thought I would be comfortable being on all these meds, but it has literally changed my life to have this treatment. I'm on Losartan, Hydrochlorothiazide, Bystolic, Clonazepam, Ambien (which I haven't filled yet), and Urogesic blue for spasms, and Albuterol, when I need it. I also sleep with a Cpap machine. I have good days and bad days, I don't work, but when I pace myself, and don't do too much on any given day, I am able to do most of what I enjoy, walk my dog, exercise at the gym (I push myself, but it helps), and have accepted my "new normal". Life is a gift, and I'm living it one day at a time. "Life is not measured by the number of breaths you take, but by the moments that take your breath away." Hilary Cooper