enko Posted March 17, 2011 Report Share Posted March 17, 2011 Hello all!I'm not diagnosed with dysautonomia, just with mitral valve prolapse, and I've found this site while poking around to find something more about MVP which connected me with dysautonomia. Well, here goes my lamentation.. Few years back I had presyncope few times (first feeling dizzy, spinning, having trouble breathing and collapsed loosing sight and posture but I still could hear). To be honest I've ignored it for some time and once told it to my doc. He said "You have low BP, drink more water and eat salty.". OK, I always have a bottle of water with me and take sips. But after that I again felt that dizzy feeling and spinning around, mostly in warm rooms, open sun and where's a lot of people. I have managed to avoid further damage by sitting down. And again I ignored that episodes.Three years back I had my appendix removed. I've woke up one morning with awful pain and was taken to surgery in short notice. After that I had slightly elevated temperature for eight months (it was reeeeaaaally annoying) and again my doc just waved his hand off after blood tests "I don't know what's the problem. Probably a small infection." It didn't "help" that I've told him that I'm also feeling often headaches and chest pain. Probably wasn't worried because the pain was on the right chest side For years I have had that headaches and they are getting worse. Sometimes I just can't get out of bed because the pain and often no painkillers help and sometimes it lasts for days Since I'm also having problems with my eyes I'm quite often with my ophthalmologist. Once I complained on often headaches and she asked for a neurological checkup. Well, the neurologist asked how often I have headaches, what kind of pain and other than saying that I'm underweight and that I have stronger reflexes on my legs asked for a regular blood, thyroid and EKG checkup. The tests returned fine and she was wiling to leave all behind with "Contact me when you'll have that headaches again." I've asked what to do with that collapsing sensations I have (because I've stated it in first interview) so she said that maybe I can go on testing of autonomic nervous system. First I had to go to cardiologist. I've had ultrasound checkup on heart that showed that MVP (without regurgitation). Holter showed some sinus arrhythmia, few AV blocks and nodal rhythm. Cardiologist asked did I have episodes of fainting and palpitations. I've stated my case (first palpitations I had a long time and they occasionally come back, together with pain in left chest side). He cleared me as healthy. I've asked for a second opinion and had the same answer. I guess I'm too young to be sick (27 y.)Now my only hope to find out what is wrong is that autonomic nervous system test. I don't even know what it means and what they are going to do to me And will my doc even read the results in manner that she really cares. I'm extremely tired and trying not to slip deeper into depression but it's really hard I'm having memory problems and feeling confused all the time, I'm constantly tired and sleepy (I literally drag my feet) and can't wait to have a nap (I sleep 10 or so hours daily and it's progressing and I'm waking at night more and more often). That temperature and right chest pain are kicking in every now and then. Also I'm loosing weight and muscle tone (and I unfortunately don't stand exercise because my heart goes wild and I can't catch a breath). That headaches are awful and I get to be hypersensitive on smells and light and I'm really, reaaaally afraid what will that heat do to me next summer And doctors tell me that everything is just fine with me :( Am I crazy? They are making me feel like a hypochondriac and I don't want to talk about my problems with anyone any more I just want to cry now Does any of you have any advices what to do at least with that headaches? They are really killing me..Did someone of you have that test? Can you pleaseee tell me something about it? Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 18, 2011 Report Share Posted March 18, 2011 Hi and welcome! Have you checked out the DINET Web site? There is a ton of info there on the various types of dysautonomias and a lot of info on what testing they do at various centers. There is also a list of docs that people on the site have used and found to be helpful. It's a lot of info to process, but there is a wealth of info there. Please check it out. I know I printed out a lot of the info and took it with me to my doctor when I found this site and wanted him to pay attention to what I was saying. Luckily I have a PCP who's willing to listen and took my articles to read. Good luck! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 18, 2011 Report Share Posted March 18, 2011 Did the Dr. say they want to do a Tilt Table Test? Google it --it's not a bad test at all and can give lots of useful information. Quote Link to comment Share on other sites More sharing options...
enko Posted March 18, 2011 Author Report Share Posted March 18, 2011 Hi and welcome! Have you checked out the DINET Web site? There is a ton of info there on the various types of dysautonomias and a lot of info on what testing they do at various centers. There is also a list of docs that people on the site have used and found to be helpful. It's a lot of info to process, but there is a wealth of info there. Please check it out. I know I printed out a lot of the info and took it with me to my doctor when I found this site and wanted him to pay attention to what I was saying. Luckily I have a PCP who's willing to listen and took my articles to read. Good luck!Thank you!You're lucky that your doc listened.. Mines just wave with hand no matter what I say.. I'm reading that data at least for myself... Quote Link to comment Share on other sites More sharing options...
k'smom Posted March 18, 2011 Report Share Posted March 18, 2011 Hello! I'm so sorry you are having all these issues and no one is really listening. Well, to be honest, it's probably not that they aren't listening or think you are crazy, it's probably the fact that they just don't know. Over the last year and a half, I have to taken my daughter to more doctors than I care to count. I'm still surprised at how many wanted to put her on meds for depression, (she's no where near clinically depressed!). She was told her problems were because she was obese, (she's well within her normal bmi for height and weight). Some doctors will say whatever comes in to their mind to compensate for their lack of understanding or knowledge. My point is, don't let it get you down or cause you to give up. The symptoms you describe are not normal for healthy people. You know something is wrong in your body, so continue until you find a knowledgeable doctor to help treat you.I can tell you what our experience was with autonomic testing. I'm not sure if it will be the same for you. I think it depends on where you go and who performs the test. I'm definitely no expert!First they did a sweat test on Kay, which consisted of putting some electrodes in different spots, feet, legs, hands, arms, head--if I remember correctly. It was NOT painful in any way to her. It sends a signal and registers the amount of sweat to see if you're in normal range.Second, she was hooked up to a continuous EKG, blood pressure and finger heart rate monitor. She was just watched for I think 10 mins or so and all of this was being electronically recorded. She was already on a tilt table and they raised the table to an almost upright position to monitor and record any changes in BP and HR. Pretty much everyone can probably relate to the fear of the unknown and your desire to find out what's going on with you. Try to relax, because I'm sure the anxiety of it all compounds your symptoms, and like Chaos said, try to go through the list of doctors here because so many others have no idea what dysautonomia is, much less how to treat it. Good luck and our prayers are with you. Quote Link to comment Share on other sites More sharing options...
enko Posted March 18, 2011 Author Report Share Posted March 18, 2011 Did the Dr. say they want to do a Tilt Table Test? Google it --it's not a bad test at all and can give lots of useful information.No, didn't even mention it. Quote Link to comment Share on other sites More sharing options...
enko Posted March 18, 2011 Author Report Share Posted March 18, 2011 k'smom,Thank you a lot for taking the time to write that down! It means a lot to me! You're right, they probably don't know. Just yesterday I was reading about dysautonomia in my native language (I'm from Croatia) and I could find just barely some data. Syncope and presyncope is something that needs not to be treated. Some people with dysautonomia were given meds for depression. IMHO, depression is a side effect of dysautonomia and not a cause and the problem won't be solved... I just go back to reading... there's a lot of data on this forum.. Thank you all who posted Quote Link to comment Share on other sites More sharing options...
k'smom Posted March 18, 2011 Report Share Posted March 18, 2011 I'm in agreement with you about the depression being a side effect. I believe meds such as Zoloft, ect., can be very harmful if taken when not needed. The only thing I would say on syncope/presyncope not being treated, is that there is a reason for it to happen. So the cause of pre/syncope should be determined and then treat the cause. I've learned the hard way with my daughter the pre/syncope can be very dangerous. Passing out while in the shower ended with her being admitted to the hospital with head trauma and bruised ribs. So be very careful with accident prevention. Quote Link to comment Share on other sites More sharing options...
enko Posted March 18, 2011 Author Report Share Posted March 18, 2011 Ouch.. I'm sorry to hear that about your daughter The advice my neurologist gave me was "Sit down and let it pass and avoid that kind of places". Well that surely won't help cause I still need to use public transportation (and many people in a small room triggers me). Life is horrible for me right now At least you understand what I'm talking about.. Quote Link to comment Share on other sites More sharing options...
songcanary Posted March 18, 2011 Report Share Posted March 18, 2011 I had the same loss of muscle tone and weight loss. In addition to extreme fatigue, chills, nausea. I thought I had Addison's disease at first, I was really scared and felt like I was watching myself die. I told that to my doctor and he thought I was just being melodramatic. NOT. When I finally got diagnosed with dysautonomia at the Cleveland Clinic, I was started on doxepin and 2L salt water, plus compression hose. I had also recently started Armour thyroid. I also quit working to rest my body. It really helped me to do that, I know for some it is not possible but I am self employed and had a thriving business I gave up; it was like a death, so hard.The site info helped me tremendously, it made sense of these senseless symptoms. Best of luck, keep searching for a doctor who will listen. In my case I had to switch more than once and I am SO glad I did, even though at the time I felt ridiculous. Quote Link to comment Share on other sites More sharing options...
mwise Posted March 18, 2011 Report Share Posted March 18, 2011 Google Mayo Clinic as it gives good explanations as stated below about the tests & more. Here are some of the autonomic tests you may want to have done:§ Valsalva maneuver. This noninvasive test checks the functioning of your autonomic nervous system by analyzing your heart rate and blood pressure after several cycles of a type of deep breathing: You take a deep breath and then force the air out through your lips, as if you were trying to blow up a stiff balloon.Tilt-table test. This test monitors how your blood pressure and heart rate respond to changes in posture and position, simulating what occurs when you stand up after lying down. You lie flat on a table, which is then tilted to raise the upper part of your body. Normally, your body compensates for the drop in blood pressure that occurs when you stand up by narrowing your blood vessels and increasing your heart rate. This response may be slowed or abnormal if you have autonomic neuropathy.Gastrointestinal tests. Gastric-emptying tests are the most common tests to check for slowed movement of food through your system, delayed emptying of the stomach and other abnormalities. The testing can take various forms. One test may measure the rate at which food leaves your stomach, while another checks how well your stomach muscles relax after you eat. These tests are usually done by a doctor who specializes in digestive disorders (gastroenterologist).Quantitative sudomotor axon reflex test (QSART). This test evaluates how the nerves that regulate your sweat glands respond to stimulation. A small electrical current passes through four capsules placed on your forearm, foot and leg, while a computer analyzes how your nerves and sweat glands react. You may feel warmth or a tingling sensation during the test.Thermoregulatory sweat test. During this test, you're coated with a powder that changes color when you sweat. You then enter a chamber with slowly increasing temperature, which will eventually make you perspire. Digital photos document the results. Your sweat pattern may help confirm a diagnosis of autonomic neuropathy or other causes for decreased or increased sweating.Urinalysis and bladder function (urodynamic) tests. If you have bladder or urinary symptoms, a series of urine tests can evaluate bladder function.Ultrasound. If you have bladder symptoms, your doctor may do an ultrasound, in which high-frequency sound waves create an image of the bladder and other parts of the urinary tract.I have had several of tests: Tilt Table, QSART, Gastric Emptying Study, Ultrasound along with lots of blood work tests. Good Luck:) Quote Link to comment Share on other sites More sharing options...
enko Posted March 18, 2011 Author Report Share Posted March 18, 2011 songcanary,I already changed PCP once, and they're both not listening.. argh.. The worst thing now is that both of my parents and me are under same doctor, he tells them everything.. P.S. I like your nick Well, I like birds, and I've got a little budgie from a friend few days ago. He's such a cutie Sorry for off-topic Quote Link to comment Share on other sites More sharing options...
enko Posted March 18, 2011 Author Report Share Posted March 18, 2011 mwise,thank you for that precious info! Wow.. there's a lot of things Who knows what they are going to do to me.. Well they're at least going to do something.. I just want to know what to do to stop all of that awful things happening to me Quote Link to comment Share on other sites More sharing options...
ladyt Posted March 18, 2011 Report Share Posted March 18, 2011 Hi...I think docs handle poorly to be un the shaky side , so insteed of trying to undertand the patiens situation they start looking like crazy for the u are ust stressed out explanation. I am now at the piont that i belive if i whent to the doc whit a broken legg he would ust say u are stressed out or to layed back or somthing I have had the tilt test, thats how i got my diagnose..=)wouldnt it be wounderfull if only people over 75 could gett sick..? I hope u find advises and info here that can help u deal better whit the stuff u are going trhou.. i dont have any for u now, exept to say there is many of us that looks fine (or so some claim) on the out side but are a freakshow on the inside....best of luck Quote Link to comment Share on other sites More sharing options...
enko Posted March 18, 2011 Author Report Share Posted March 18, 2011 Ooooh, I just love the "You are just stressed out" explanation.. I should keep some kind of record Thank you all, I'm feeling much better because someone is understanding me Hugs for everyone Quote Link to comment Share on other sites More sharing options...
enko Posted March 19, 2011 Author Report Share Posted March 19, 2011 Oh and, songcanary don't mind me asking.. did you manage to get some weight and muscles back? If yes, what did help? Quote Link to comment Share on other sites More sharing options...
songcanary Posted March 19, 2011 Report Share Posted March 19, 2011 Oh yes. It seemed like the very day I started doxepin that I had a good appetite. It was like a miracle. Doxepin is a known appetite stimulant. I don't know if it was a coincidence or not, because I also started Armour thyroid at the same time. I still take both of those meds. I have gained all my weight back and then some. I started yoga in the fall, very cautiously, and it has made my legs in particular the strongest they have ever been. I did have to take it slow and many times I left class because I felt lightheaded and it really scared me. But with time I could tolerate more and more. Now I can enjoy a full class three days a week. I think yoga in particular has helped because the poses are beneficial to the autonomic system, kind of like I'm pumping blood more efficiently, if that makes sense! Quote Link to comment Share on other sites More sharing options...
enko Posted March 19, 2011 Author Report Share Posted March 19, 2011 How is Doxepin and your BP? Mine is low, doesn't he make it even more low? Quote Link to comment Share on other sites More sharing options...
songcanary Posted March 19, 2011 Report Share Posted March 19, 2011 Good question. I think in high doses it might, I have read literature to support that. But in low doses, at least for me, it doesn't seem to be a problem. I take 25 mg at bedtime. My BP is the same as it has always been, about 100/70 give or take 10. Quote Link to comment Share on other sites More sharing options...
enko Posted March 19, 2011 Author Report Share Posted March 19, 2011 Thanks, that's a relief Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.