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I Know I Can't Be the Only One ...

I was diagnosed with dysautonomia about two years ago.  Anyone who joins this group will know the story, but since it seems no one does yet, I'm going to explain the illness.  Dysautonomia is caused by malfunctioning of the the autonomic nervous system (which controls all “unconscious” bodily functions - like heartbeat).  In people with dysautonomia the person's vagus nerve (one of the 12 cranial nerves) malfunctions, causing the ANS to not work properly

Dysautnomia comes with a host of other illnesses, including chronic fatigue syndrome (CFS,) vasovagal or neurocardiogenic syncope, panic attacks, anxiety, inappropriate sinus tachycardia (IST,) irritable bowel syndrome (IBS,) postural orthostatic tachycardia syndrome (POTS,) and fibromyalgia.  Not everyone has all of these symptoms.  (I unfortunately do.)

Or another way to say it: frequent, vague but disturbing aches and pains, faintness/fainting, fatigue and inertia, severe anxiety attacks, tachycardia, hypotension, poor exercise tolerance, gastrointestinal symptoms, sweating, dizziness, blurred vision, numbness and tingling, anxiety and depression.

I really hope that someone joins this site that has the same problem.  If not, I'll have to be content to share my story for now.  I will go into more detail later, I guess.
brandnew brandnew 21-25, F 36 Responses Dec 13, 2007

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Do you also get a morning headache after getting out of bed?

My 12 year old daughter is dealing with similar stuff

I have all of this but have been diagnosed with generalized anxiety that is aggravated by vasovagal syndrome. I have a lot of these symptoms and now wonder if I was misdiagnosed.

I was diagnosed with dysautonomia about six years ago. But I had spent three years without an attack.... until last week, now it's accompained with a terrible complicated migraine, unfortunately living in the "third world" hasn't helped. People say it's psychological, that I'm just seeking for attention or that I'm faking it. I'm visiting the cardiologist today, wish me luck guys. (excuse me for my poor English)

Need to find a specialist that does autonomic testing including a tilt table test. Unfortunately many times simple blood tests will show everything in range even though your body is totally dis regulated!

I would like to join, my daughter has this condition. I also fear I was misdiagnosed, they said I have MS but I believe it is Dysauronoma.

I, too, have had dysautonomia for two years as the result of a head injury. My symptoms did not appear for about one year . They , then, began in a very dramatic way. I was fortunate that I have an excellent internist who practices many alternative modalities as well. Once he was sure that it was dysautonomia , he said that the key to my recovery would be an osteopath who practices OMT
( osteopathic manipulation technique) . They receive extensive training in treating conditions of the brain ( cranial- sacral ) . I made an appointment the next week. I have been going ever since. Sometimes I go once per week. Sometimes I can" hold" the treatment for two weeks. He told me at the onset of treatment that there would likely be some very rough patches and he was not kidding. Like many of you, I can have good days and even a couple of good weeks but if I overtax my brain in the slightest, I'm back in bed for days, weeks or months. I haven't been able to work at all during this time.
Every organ and system in my body has been affected multiple times .

The neurologist I went to , early on, said that there was nothing that could be done to help me besides the passage of time . He said I would be better in three or four years. So useless.

My osteopath said he felt that with treatment, I would be better in two years. I have been seeing him for 18 months and he still feels I will be recovered in six more months. Like all of you say, this has been a very difficult road. Everyone's symptoms are different and the path to recovery is not a linear one. Sometimes , for every step forward, it seems like you take two back. That said, I firmly believe that I am getting incrementally better every day.

For any of you who do not have a medical provider who understands or treats your condition in a way that is helping you, I urge you to find an osteopath (D.O.) who practices the osteopathic manipulation technique ( OMT) in your area. This is a very complex syndrome . I have yet to find anyone besides an osteopath who understands it. You will feel so validated if you do it, and you will get better.

All of these disorders/symptoms would have been called hysteria in the 19th century and they were right. Seek a psychodynamic psychotherapist and in a few sessions you will stop talking about your physical symptoms and start working on the deep unconscious pain that causes them. Try reading Edward Shorter's From Paralysis to Fatigue and Dr Sarno's Divided Mind.

Wow. Please explain to us what medical authority you are that you think these are symptoms of "hysteria"? Your total ignorance on the subject of this SCIENTIFIC hormonally inflicted problem is astonishing. As a medical student and a patient suffering from POTS and dysautonomia I am confronted daily with people like you who don't believe that their child/sister/wife/parent is suffering from a disease causing hormonal imbalances. This is a serious, debilitating issue and it should be treated as such. Read a textbook.

My daughter is nineteen, she was diagnosed five years ago, after many trips to er's and doctors, with dysautonomia. Never heard of it before this. She has been put on, what seems to be the normal meds for this:midodrine,salt and lots of water. Day to day she is a beautiful, active young woman. But the episodes are increasing as is her anxiety. She recently took a medical leave from college. My daughter can be fine one minute, then just as fast gets a headache, her heart starts to race and then a curtain closes over her eyes and she faints. During these fainting spells, she has violent convulsions.
This past week, she banged her foot so hard for an hour she broke a small bone. (I was holding her hands from striking herself). Medical doctors, this past summer, told her these convulsions were due to a psyco occurrence in her past that she is suppressing. Now she feels like the doctors think she is crazy. Does anyone else experience this seizure activities? Thanks for listning

Since finding this site and this thread, I have gone on to join 3 different Dysuatonomia groups through Facebook, and now know that hundreds of thousands of persons throughout the wold struggle with multiple variations of this disorder/disease. I have gained an immense amount of invaluable knowledge from being a part of these groups and am so very grateful. It all started here. So, good luck to you all, we are kindred spirits and I will alwys pray that you will continue to find better health and greater happiness.

I am going through the same symptoms with shortness of breath with any type of exertion. Normal chest ct's, normal stress test, normal echo, normal angio. I had a positive tilt table test (passed out) and an abnormal pft that showed restrictive lung defect with no apparent cause. I am thinking a type of dysautonomia but don't know where or how to get this diagnosed. I have been to too many specialists that tell me they can't find anything or that its just anxiety. I feel horrible and can't accept these findings. I am 36 yrs old, male and up until 4 months ago was an active athletic person. Any help or suggestions with this will be appreciated.

Forgive me, but I'm repeating my response, so that more people read this and perhaps may be helped...We just found out this week that my husband has this condition. Previous diagnosis was multiple sclerosis, which we now believe he doesn't have or is secondary, not sure. It turns out, after doing a battery of specialized testing, his vagus nerve is being pinched by bones in his scull, which also pinches his jugular veins (both run through the same sheath). His doctor recommended NUCCA therapy. It's a form of chiropractic manipulation of the scull and upper neck vs. the mid/lower spine. Our doctor explained that it has had very promising results on this condition (results w/in just a few sessions!). Perhaps you need to check that out as well. In the meantime, if I can answer any question, I'd be happy to do so!

I have been reading all these reports, as my best friend of 30 years has been diagnosed with dysautonomia. I want to know what I can do for her, and more importantly, what she can do for herself. Due to other illnesses, she has been bedridden for the last year, if not more. I think it would be beneficial to her if she got up and walked a bit, even if it's just to the end of her driveway. I do not want to push her into anything she's not ready for, or able to do. I want to help her, I love my friend. What can I do?

Forgive me, but I'm repeating my response, so that more people read this and perhaps may be helped...We just found out this week that my husband has this condition. Previous diagnosis was multiple sclerosis, which we now believe he doesn't have or is secondary, not sure. It turns out, after doing a battery of specialized testing, his vagus nerve is being pinched by bones in his scull, which also pinches his jugular veins (both run through the same sheath). His doctor recommended NUCCA therapy. It's a form of chiropractic manipulation of the scull and upper neck vs. the mid/lower spine. Our doctor explained that it has had very promising results on this condition (results w/in just a few sessions!). Perhaps you need to check that out as well. In the meantime, if I can answer any question, I'd be happy to do so!

HI I have a 13 year-old who has dysautnomia, i can tell you she have had a very bad times, she started when she was 8 year-old, doing gymnstics, she started with dizznes, she turned very pale, sweeding and very tired, we stared going to many doctor, but all the test were graet, so the dr just told me to take her out from the symnastics, she felt beter for 3 years, but if she had any illnes she started again havin the normal symptoms of the illnes plus be pale, sweeding, dizznes and tired. <br />
Since 1 year ago the symptoms have increased alot, now she is having nause, vomiting, dahiarrea, had aches, orthostatic hypotension, her heart is faster, she has pain in her legsm stomach, feet, arms, plus the other symptoms, she has extreme fatigue, she is not able to walk , she is not going to school since 2 month, now s he is going to have a homeschooling,.<br />
we went to many doctors, we went to Clevelan, Boston< then returned to Cleveland and finally we had the diagnoses, we are trying whith Florinrf, drink plenty of water, more salt, stocking socks, but it is not working so good, please if any of you have a good treatment let me know

Forgive me, but I'm repeating my response, so that more people read this and perhaps may be helped...We just found out this week that my husband has this condition. Previous diagnosis was multiple sclerosis, which we now believe he doesn't have or is secondary, not sure. It turns out, after doing a battery of specialized testing, his vagus nerve is being pinched by bones in his scull, which also pinches his jugular veins (both run through the same sheath). His doctor recommended NUCCA therapy. It's a form of chiropractic manipulation of the scull and upper neck vs. the mid/lower spine. Our doctor explained that it has had very promising results on this condition (results w/in just a few sessions!). Perhaps you need to check that out as well. In the meantime, if I can answer any question, I'd be happy to do so!

I have been diagnosed at 3 different times in my life with Dyautonomia by 3 different neurologists, but I would go through periods where I would be almost symptom free, and go into deep denial thinking they just took some symptoms and jumped to conclusions. For the last year, my symptoms have been severe- life threatening and show no signs up letting up. I am in a downward spiral- can't sleep, so my immune system is weak, so I keep catching stuff, my exhaustion causes my heart to screw up even more, which ramps up my anxiety, digestive tract malfunctions and I feel toxic as a result- affects my appearance- my boyfriend is not good at dealing with me needing help- I am working 7 days a week so I don't lose my job- I can't take any time off work any time soon even though I have 20 vacation days-(big experiment going on in lab) I can't go on disability cause the low monthly income would put me homeless... Oh- and here's the kicker- I'm a research scientist. I help everyone, but I can't help myself ... not even my National Dysautonomia specialist can. I wanna pack a bag- leave town- go to Cali- change my name- live on the beach for a few months then just go ahead and give up fighting and die happy watching the waves... This is torture.

I am so sorry for what you are going thru. I am watching my best friend of 30 years go thru this, and it's heartbreaking. I wish I could offer you some comfort. Can I do anything to help you?

We just found out this week that my husband has this condition. Previous diagnosis was multiple sclerosis, which we now believe he doesn't have or is secondary, not sure. It turns out, after doing a battery of specialized testing, his vagus nerve is being pinched by bones in his scull, which also pinches his jugular veins (both run through the same sheath). His doctor recommended NUCCA therapy. It's a form of chiropractic manipulation of the scull and upper neck vs. the mid/lower spine. Our doctor explained that it has had very promising results. Perhaps you need to check that out as well. In the meantime, if I can answer any question, I'd be happy to do so!

Thank you so much for your care and concern- I lost my job at the University since that posting, but I am applying for every lab job that's out there right now! I won't give up- I've got too much of a warrior spirit from my ancestors for that... hahaha... I have found a new Neruo. and a new Cardio. since that last post, and am currently wearing a 30 day heart monitor- so we shall see...

RioGirl16- thank your for this info.! I will check with my Chiro (I do have a good one) and see if this may be of benefit to me as well! Good luck to you guys- I sincerely hope your husband finds healing available out there- this condition is a constant source of unwanted surprises...

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Hi, I have similary problems...<br />
<br />
I was diagnosed with severe joint hypermobility syndrome when I was 6 months old, but it has become much worse in the last 2 -3 years because I was recently diagnosed with dysautonomia, orthostatic hypotension and have some of the symptoms of POTS and EDS but the doctors are not sure why because I don't have those.... The combination of the above leaves me feeling tired and sore every night and I have chronic pain and fatigue most of the time which makes college very difficult. It is refreshing to meet people with similar problems as there doesn't seem to be too many people who really know much about the condition (I particularly had problems with doctors who could diagnose AND but could not give me any advice on how to deal with it.) I have generally found that the best way to deal with all these problems is to contact the support sites associated with your condition and read other people's advice on their solution's to specific problems. I hope I have helped anyone out there with similar problems... Good luck sorting everything out! x

Hello - I have been suffering from: Inability to sweat/severe heat intolerance, Cardiac - PAC's, PVC's, and Tachycardia, Dizziness, Photosensitivity, Severe anxiety and panic attacks, blurring vision... the list goes on. However, I do not have POTS. Saw a neuro in Chicago who did several tests (including QSWEAT) & said "yes you appear to have autonomic disease/damage/dysfunction.. but there is nothing I can do to treat it". Sigh. This has been going on for almost 7 years. Living is just not fun. I never feel "good", ever. My heart skips, flutters, and pounds all day, every day. I can't find a doctor to partner with me, and I'm starting to lose hope. If there is anyone in the Chicago area who has an Autonomic issue, and has found any good doctors, please let me know. Thank you so much!

Dr. Blair Grubb is In Toledo, OH....only 4 hours away

hi everyone.. i am 19 years old and was diagnosed with POTS a little over a year ago. the past year has been hell, and i have been trying everything to recover! unfortunately i haven't found tremendous relief, however if anyone has any questions or needs advice, ill offer any help that i can! also, jerseygirl0131, if you have questions about pots, id love to answer :)<br />
good luck to everyone!<br />
becca

oh thank you so much for this! my daughter may have this. she has so many odd ailments and symptoms we couldn't figure out what it was. now we can ask the doctor if this could be it, it gives us something to work on. she has had these symptoms for 6 or 7 years.

Hi Brand New. I think the most important thing is finding a doc that believes in dysautonomia not their specialty. They will be able to refer you to other docs they know understand dysautonomia. My internist, EP, cardiologist, neurologist and autonomic specialist started with a phone call between my EP and Internist. Lately, things have been difficult and I had had I regular scheduled appt with my internist and she was asking questions about how I felt physically and then how it was affecting work and my mood - it was very freeing to be able to tell her how I felt without worrying about 1 more pill and another diagnosis. We just talked and I told her my plan for dealing with the stressors and she suggested some other ideas as well. Even though nothing was "fixed" I felt great when I left because I know that she heard me and that what she heard was okay - I am not crazy. One doc you can trust is indispensable in maneuvering the maze of healthcare providers and their knowledge about <br />
dysautonomia. Good luck!

OMG I have to say right now after reading your post it made me soooooo excited I could say if we were in person I dont know you but I would hug you. My doctors have been trying to figure out what is wrong with me besides my POTS. When you mentioned the vegus nerve it connected everything in my brain. So first I have had extreme fatigue. The doctors thought it was depression but the more I look into Chronic Fatigue Syndrome....all the symptoms fit. Also I looked up where the vegus nerve is located and it is located at C1 of the vertebrae. I am always complaining to my fiance a pain located in that area. I also suffer from scoliosis which is a curvature of the spine. I suffer from alot of the symptoms of a damaged vegus nerve. If it weren't saturday I would definitely call my doctor right now. I listed all my symptoms in my blog on here. <br />
<br />
I was having a rough day and you just brightened it. I joined this site to help others and just by posting your experience you have helped me. I have been researching POTS on and off for the past 2 years.<br />
<br />
I am working to promote awareness about POTS.<br />
<br />
Thank you <br />
Annie Morales<br />
<br />
http://www.facebook.com/PixieCorp

I have had a dysautonomia most of my life (POTS with orthostatic hypotension) and I'm 50. I've lived my life not knowing exactly what I had but with all the symptons of Pots, taking beta blockers since I was in my early twenties etc.... When I turned 50 I had a major system crash and had to go to the Mayo Clinic in Rochester, MN a year ago to finally get the diagnosis of Pots with Orthostatic hypotension. In 2010 I fought my way to a better life to the point I could walk more than 5 minutes but my life is not the same as it was before and I wonder if it will ever be. You just have to accept it and try do make the symptons better by exercising, relieving stress, trying various medicines and make the most out of your life as you can. Hopefully someday they will have more answers and I wish all you wonderful people out there with a dysautonomia the best that life has to offer.

Ecopea - <br />
<br />
Things do get better. I can't say I've ever been back to how I was before I got sick, but I've had lots of really good days. The bad ones are still frequent but I'm a firm believe in looking at things positively so I'm just thankful to have at least some good days :) I'm here for you and will be praying for you. You're more than welcome to send me a message, add me as a friend, or whatever will be helpful to you.<br />
<br />
-Tori

I was diagnosed with neuro-cardiogenic syncope 12 years ago and after trying all the neds, salt, etc. nothing worked - I got a pacemaker 10 years ago. Then a few months ago I went for a pacemaker check and my EP found orthostatic intolerance. I have had almost every type of test the non-specialists can do and they are all normal. I have dizziness even when sitting or lying down, almost constant nausea, heat intolerance but no sweating, delayed gastric emptying, near-syncope, vision problems, dry mouth and eyes, and on and on. I am tired of this - I know my doctors must be tired of it too. I have another 7 - 8 weeks until my specialist appt. In the meantime, I am reaching the bottom of my patience/tolerance. Does anyone get their life back? I have so much planned and I am beginning to think that no one really gets to a place where they are okay again. I haven't done anything for weeks -tired but cannot sleep - it is worse than trying to find a doctor to help me control my syncope episodes.<br />
Has anyone else had a progression like this? Thanks for reading.

I was diagnosed approximately two years ago as well, and I know exactly what you are going though. I just ordered a booklet that I thought explains how we may not look sick but are not able to function normally - "But you LOOK good." You may want to check it out. It's taxing and frustrating and painful and you begin to wonder what's the point of living each day when it is so unpredictable and possibly horrific. Keep hope alive though - you're not the only one out there. I also have cyclic vomiting syndrome (CVS) and an almost non-existent short-term memory. I hope it helps to know your struggle is not unique.

Hey Jerseygirl,<br />
Find a physician in your area who specializes in Mitral Valve Prolapse and Autonomic Disorders. There is a simple test. It is called a Tilt Table Test. They put you on a flat table and measure your heart rate, blood pressure, then they tilt the table up by 5 degrees. If you have dyautonomia and POTS your bp and heart rate will shoot up and not be able to stabliize. The table keeps tilting for about 30 minutes. Normal funtioning autonomic systems will return to normal almost immediately, if you have dysautonomia your heart rate, bp will not stablize and you will feel dizzy and sick. Not a fun test, but you will know when you leave if you have dysautonomia

Hi. I read the comments by brandnew, julieg, delinacaldwell, blahblah29, etc. I have Fibromyalgia and herniated discs and quite a few other medical problems. I always have anxiety, panic attacks, chest pains, sweat alot, bloating, gastrointestinal problems, horrendous periods, very fast heart rate, excessive thirst, etc. I came upon this website and after reading other's comments, felt as though it sounded like I could have POT'S. Does anyone know how I could find out/get diagnosed or tested for POT'S/dysautonomia? I never heard of these conditions before, but feel as though the symptoms sound like me, although I have never fainted yet. Could one of you help me? I got Mono 4 years ago and it lead to Fibromyalgia and I seem to have sooooo many other things wrong with me and perhaps it's dysautonomia/POT"S. ANY INFO would be greatly appreciated.<br />
Thanks,<br />
Jerseygirl0131 :)

I have dysautonomia, and I am only 13. I feel ur painn! it is one of the worst things to happen. its life disrupting, and i dont feel that i can be a normal teenager and live a normal life like everyone else. i just recently got diagnosed last week, but i have had the symptoms for 3 to 4 months. At first the doctor's thought that I had Raynaud's Phenomenon, because the first symptom that showed was my hands getting cold out of nowhere,turning blue, and I wasn't able to move them. That happened for about a month,every day. What I didn't know was that me having a hard time concentrating in class, me seeming to forget where everything I own is(brain fog),and my once being depressed, were also symptoms. Now, my legs give out on me at least twice every day, and I am getting a wheelchair. My family and I are considering homeschooling because I am falling very far behind in school. So i understand how ur feeling. I don't think that anyone fully understands me either. They think I am fine, and that Im faking it, because on the outside, i look normal. But on the inside, Im really messed up. I keep on trying to tell them, but they wont listen. I hate it. It'r ruining the lives of me, my family, and my friends. :(

So sorry to hear your story, my daughter is also 13 and going through this also. I know how hard it is for her too. She has had this for a year and three months.

I have Dysautonomia also, and so does my 18 y.o. son. I haven't read/posted to any sites in a couple years because it seemed to make my emotional outlook worse and not better--i.e. I felt everyone's pain. But I am so frustrated by a lack of progress towards our goal of wellness I had to seek out our "tribe". I at least am able to drive, again--usually--and work--occasionally (as a sub). But it seems as each year goes by I develop new symptoms without solving the old ones. I developed three "bruises" on my legs in the past 2 days--without injuring myself. I see my neurologist tomorrow--but he like all the rest seems to be tiring of my case. Last time he said I should go back to my cardiologist--for what, another "normal" ECG, echo, etc.? Maybe I'd like to do a third 30-day holter monitor--no thanks. Just make me well--or if not me, at least my son. He's had to quit high school to homeschool, barely makes it through one of his 3 one-hour classes at college each week, barely makes it through his part-time shift at work, often can't drive--can't have a normal teenage life at all. Sounds like I'm back in the anger stage of grief again. Has anyone heard of the treatment with secretin--a digestive enzyme? Many of our symptoms are digestive along with tachycardia, dizziness, faintness, etc. Since we developed it at roughly the same time we thought maybe it's from the Chinese drywall problem down here in SW Fla.--but noone else thinks that's likely. Just coincidence I guess. Well, nice to meet you all--I don't have too much encouraging to say at the moment (we both had a rough night last night) but believe me when I say--I feel your pain. Delina

I know you are going through a tough time because I too suffer with this illness. I was a teacher and had to quit my job because i could no longer function in a class. I was continuously fainting, headaches, pains in various places all over my body, bladder infections, and my toes turning purple and swelling. I was extremely weak and stayed with a low grade fever and numerous other symptoms. I just try to stay positive and each day that I have is a blessing. Some days I can't get out the bed. Just try not to get too discouraged, I do too at times, but try to fight this and keep your head up.

I was diagnosed with dysautonomia about a month ago,although the symptoms have been going on for about a year.(I got mono last winter from my 13 y/0 son,and have been sick since)I have a grat PCP,and Neurologist,who are working hand in hand to help me,It looks like I have POTS(postural orthostatic tachycardis syndrome)which means if i stand from a sitting position,or bend over,my bp plummets,and my heary rate rockets up.I have anxiety attacks,Irritable bowel,upset nauseated tummt,sweat alot(this usually goes along with the anxiety,or upset stomach)and alot of dizziness,I cant even drive my car right now,which is making me crazy!I also have depression issues,which I am told go along with this.I hope to meet more of you,and hopefully connect,I feel alone,and scared....Thanks for listening to me ramble,JulieG