bellgirl

Most of the time I don't have an appetite either and am nauseated all the time...I always thought it was because of my dizziness, but now that is somewhat better with medication, I feel it is probably more gastro related. I have a smooth muscle relaxant, Urogesic Blue, when I have a lot of side pain, phenergan puts me to sleep, and the only time I vomit, is when I have had vertigo, but my stools can fluctuate at times, so getting a nutritious diet is essential! I have lost 10 pounds, but I eat whether I feel like it or not, because I know I should. I can eat better in the evening, so I take advantage of that, and everything in moderation and small amounts, more frequently. I can't tolerate high fat foods, so I know I will suffer the consequences if I do, and that also helps me keep my cholesterol down, which is good. I've always been thin. I weigh 105# at 5'5".

I had an Echo laying down and sitting up in Birmingham at The Autonomic Disorders and Mitral Valve Prolapse Center of Alabama. I have a Mitral Valve Prolapse, and I could see it, watching the monitor!! I knew they were finally finding answers. It was actually a relief for me after 13 years of waiting

Sometimes medication can help. Like a smooth muscle relaxant, Urogesic Blue, can help with bladder spasms, which I have, if I drink too much water. I bet this one might work for you as well. Talk with your doctor. You will need a prescription for this one, but it relaxes the sphincter!

Are you exercising? This helps with lung perfusion, and increased lung capacity, so does singing, btw...I've never had Lyme (was tested by my neuro), but have had other lung infections, but don't know if there were 2 bacterial infections at the same time, but you know about my asthma, lung bleeds, and sleep apnea, so I have plenty of breathing issues, without the other two!! I hope you are able to find an answer...

Keep it up...so much better exercising. It is worth every minute...Way to go

If I were you, I would go to another sleep clinic, which tests for more than sleep apnea, or go back and get a second night. Mine tested for respirations, nasal pressure, oximetry (Oxygen saturation in the blood), arousals during sleep, EKG, EEG, and limb movements. I only slept really well for about 3 hours, because even on my clonazepam, I couldn't sleep with the 128 wires, 16 leads ( 8 on my head), belts across my abdomen and chest, leaking mask, etc!! So I had a second night, took the ambien with the clonazepam, still didn't get much sleep, because the mask kept leaking, respiratory therapist kept waking me up to tell me to sleep on my back, and only had 2 REM episodes, which the average person has about 5 a night. So, all in all, to be honest, those were two miserable nights, but the rewards of my Cpap are amazing!! I have to have a total nose/mouth mask, because I mouth breathe a lot. I have a Resmed Quattro FX. I have a small face, and it is the best fit for me

Thanks for all the posts...Mine is bilateral and constant...I've gotten used to it, and the hum to my Cpap, drowns it out at night, but as I write this, it's my constant companion. I guess I'll just have to "Sing a new song" during the day, or maybe buy a new song bird!! Now that's an idea.

I know that when doctors are unsure of the reasons for this illness, it does make it scary at times, when we don't have all the answers, but God does. I know when I have trouble breathing, my chest hurts, or I have awful pain in my side, I sometimes feel like it is terminal, but I know, in of itself, it is not...Although life is life threatening, even for those who are the picture of health!! Life is unpredictable for everyone, so we need to live life to the fullest when we can!! I listen to my doctor's, listen to my body, listen to God, live the life He has given me,(It's a gift), and take care of myself in the best way I can with the One who holds my life in the hollow of His hand. Every morning has new mercies, "great is thy faithfulness"

Thanks you guys...and for the forum post, too...just wondering who it effects. Nothing is going on with my inner ear, as they first expected I had Vestibular Neuritis, but after two major bouts with vertigo, I was also tested for Meniere's, so it is just Autonomic Vertigo according to my ENT, Dr. Pappas Jr., who wrote a thesis on it:o)

I have had the rushing kind and popping, only when it is really bad...always had sinus issues, have a deviated septum, and supposedly had Vestibular neuritis, but am negative for Meniere's. I had horrible debilitating vertigo, only twice, with vomiting, bedridden; couldn't walk, but I am dizzy all the time. My clonazepam has helped with my dizziness, though, and I'm much better. Still have nausea, though, because of the dizziness and GI issues, too.

Yes, yes, yes. I was referred by an ENT Dr. Pappas Jr. in Birmingham, affiliated with St. Vincent's and was seen in 12 days. They didn't do any blood work, there, but I had an Echo, Stress test, EKG and Tilt table. I've received good treatment there, medications, fluid loading, salt, exercise, etc., but I still don't know the root of my problem. The treatment is working for me, so I am satisfied. Dr. Jane Phillips is my doctor, affiliated with Trinity Medical Center. The head physician there is a cardiologist, Dr. Phillip Watkins and wrote a foreward to a book, "The Mitral Valve Prolapse Syndrome/Dysautonomia Survival Guide" written in 2002. I was sent to the Sleep Disorders Center of Alabama by them; I also have sleep apnea (Dr. William Adams from UAB), and my neurologist is Dr. Riser from Brookwood Medical Center and he did a lot of blood work, to rule out other issues, MS, Lyme disease, autoimmunity issues, and also had an MRI and MRA, since most of my symptoms are considered neurological. They are all good physicians, they listen, spend quality time with you, answer any questions you may have, and are very professional...

If it is noisy around me, I am not bothered, but when it is quiet it is deafening!!

I prefer to be up moving, as well, (NOT standing in one place, that is the worst thing for me), but always at the two hour mark, I immediately get fatigued, and of course dizzy I can sit, but I have to move around a lot, or get up in between, or my legs will go tingly or numb. I was watching "War Horse" at the theatre, and I had to get up; didn't want to walk in front of people, so I decided to squat at my seat instead. Believe it or not, it helped immensely. My husband wants to get me one of those kneeling chairs. I think it would be good for me. They were popular in the 80's....some of you weren't even born yet...lol

I have sleep apnea, and have a Cpap at night!! It has saved my life. I couldn't sleep, because of my tachycardia and sleep apnea, and I was dying from insomnia!! It is sooo much better. I'm on clonazepam at night, too. I'm much better rested, and function so much better during the day. My beta blocker, once we found the right one, helped also. I'm on Bystolic

I'm the second child, first girl, and started having symptoms when I was 42, 13 years ago. I have two children, neither of which have this....

Look at the Chest Pain topic that was posted. There are some articles and explanations there...many responded to that, as well. You aren't alone, like Lisa said. I think we all have it...even after having stress test, echo, EKG, Holter monitor, etc....I just have a mitral valve prolapse I believe it is just the way it is...possibly even spasms in the heart, possibly vessel related...not sure

I've lost 10 pounds, and my beta blocker isn't helping me gain it back, like I thought it would. I'm really rarely hungry, (nauseated all the time), but I force myself to eat small amounts, but drinking all the time doesn't help with that either. I'm back to the weight I was when I first was married . That was many moons ago. Gained some through menopause, but then lost it again I'm 105 at 5' 5''

I have chest pressure all the time, btw, and I don't have to be exerting myself, in fact, it doesn't seem to matter what I am doing. I can even be lying down. I've had echo, EKG, stress test, and had CRP tests all the time when I was on Zocor. They listen to my carotids all the time, too, but I just think it is part of the dysautonomia, and spasms...the heart is a muscle, too!!

Julie, I find what you wrote earlier about familial aneurysms interesting, because my dad had a cerebral aneurysm 12 years before he died, and my grandfather was 46 when he died of a massive CVA (without meds). I've probably had more MRI's than lollipops lately...I'm convinced that when it's my time to go meet my Maker, I, too, will end up with a stroke...but meanwhile, I'm living life as fully as I can, because even though life is short, God is good!! My son was just married over the weekend...it was glorious...appreciated every moment, but still very, very tired and symptomatic!! Thanks Anna for the articles...always interesting!!

They are both full of water, too, and fiber, also Celery with peanut butter and apples with caramel syrup!!

I do have sleep apnea, not very much REM, mouse breathes, gasping etc. Needless to say, I wasn't getting any quality of sleep and felt like I was literally dying for several years. I'm on a Cpap machine and take Clonazepam .5mg. every night now. I am so much better...still wondering what causes what?! Mostly obstructive apnea, but did you know that the average person has like one CNS apnea during the night? Strange happenings...

This used to happen to me all the time in the middle of the night, so I wasn't sleeping well at all!! Now on my meds and Cpap machine (for sleep apnea), it only happens at about 5:30 or 6:00 in the morning. It's my wake up call!! So if I go to bed at a reasonable hour, I'm a lot better now, thank you, God...

I've only had two really bad ones, but they happen all day long really to a lesser extent...Once I was upset/angry, because of frustration in finding out where I was going in a car (actually this has happened, anytime I would get very angry without meds) ; the other was when I was inbetween beta blockers; it was a full blown panic attack, but being a nurse, I knew what to do...Go to a dimly lit room, sit down, drink small sips of water, try to take slow deep breaths, and pray!!

I'm A positive:o)

Thanks Rama, boy, this took a lot of time. I think I will copy and research some more. I find it interesting that I have always loved licorice and used to eat it for my stomach, and it was actually helping my high blood pressure, too!! I like your herbal ideas...Used to use Kava Kava, Valerian and L-cartinine, too....interesting!!