Readers Respond: Dealing with this tough disorder

If you have one of the dysautonomias, your experience might be very helpful to other people with this condition. So tell us how you have coped with your dysautonomia. What has worked for you, and what has not? How difficult was it for you to get good medical help? What do you wish you had known as you set out to find out what was wrong, and to get the treatment you need? Tell Us How You Cope

darree

i need to know when to seek help. for instance Ifainted last night and mmy husband put me to bed. BP was 70/45 and i was very tachy. By the time i got to bed it was 75/45 still tachy, and very jerky Thank you

—Guest darree

Learning alot !

Well,I just finished reading many letters on this sight,and am more convinced that this is what I have. I am in my 60's,and feel that the fainting and falling out of my seat during my high school years was probably the start. In my 40's I had very bad vitigo and balance issues,also an unusual gait. As I stated earlier that now extreme heat is the big issue. Three years ago I had a gluten level done which showed mine was very high,so I went gluted free. My balance got better,fatigue less of a problem,and neuropathy in both legs up to the knees decreased. BUT the heat has not gone away. I'm glad I was not having all these symptoms at the same time like many of you. Finding this sight has been very imformative,and I need to investigate dysautonomia further. I'm going to google "p.o.t.s." as alot of you have mentioned this. I'm thankful that I live outside of Baltimore,Md. where Johns Hopkins is located. So maybe a doctor there will take my symptoms seriouly.

—Guest Joy Herrick

Broken Thermastat, strange heat

I've been battling excessive heat attacks for about three years now. It seems like my body cannot adjust to changes in temperature. Any physical activity can be a problem. Example being, coming in from the car ( hot day) going up the stairs into my air-conditioned place,and not being able to cool down. I can be in an air condition store,feel the cool air around me,and feel like I'm sooo hot and terribly sweaty. I'm past menopause. I experience shin pain and neuropathy in my legs,but body temperature is the biggest problem. In the winter I can run my house themastat on 60 and feel comfortable. You tend to take your personal body temperature for granted until you realize that you are having trouble regulating your temperature to your surroundings ( feeling cool air around you, but burning up inside and sweating like a pig ) I hope my Dr. will consider dysautonomia,as I have just learned about it myself,and feel this might be what I'm suffering with on a frequent basis. Glad I found thi

—Guest Joy H.

Diagnosed at 30

I have had symptoms symptoms since I was born but not diagnosed until I was 30..... I cried because I knew I wasn't crazy....I have digestive issues, tachycardia, chest pain, and hypotension, along with mitral valve prolapse. My dr is at the dysautomia and mitral valve center of Alabama. I would love information on support groups.

—Guest Mandy

I need more space!!

I don't know if what I did experience did have anything to do with Dysautonomia. In about 1973 whilst living in Africa ( at 29 years old) I started to have severe dizziness attacks , with heavy sweating and if severe, with stomach cramps. During the coming years my doctor did carry out a few test, but that was about it. In 1978 I moved back to Europe, I do remember the attacks were more infrequent , I think due to the cooler weather. But as I worked in steel construction, I had to hide the attacks from my co workers, they appeared about weekly by then. Soon after I started work on the new Ramses Hilton in Cairo. I think due to the hot weather, the attacks were more intence and more frequent. I remember that afterwards I felt pretty rotten all day. Now to my solution; after a few months I had to move my construction office to the 3th or 4th floor, so the first thing every morning I had to walk up the stairs to my office. Soon I realized that the attacks were less intense du e to m

—Guest Hans Wattenhofer

i have this

I was diagnosed July 2011 after almost a year of symptoms. I do believe I'm lucky. My parents supported me and believed me, even though others didn't. I now just live my life. Everything seems to be somewhat ok now, but I still feel sick everyday, I'm still excessively tired, faint, and I have constant brain fog, joint pain, but I just thank God for the good days. The days I don't faint. Mostly because that really, really, really hurts!!!!

—Guest amanda

how i cope

I am very fortunate to have some of the very best doctors that never gave up trying to find he answers I needed. I take as few medications as possible, I eat when I can, rest when I have to and do as much each day as my body will tolerate. I refuse to allow a disease to disrupt my life anymore than it has and I think possitive no matter how bad it gets. My family needs me and I need them so I have to go on, even if it means putting on a fake smile when I feel like falling apart inside. I live at a pain level of 7 daily and have become used to it, it is only when I hit and 8 or higher that I will take oxycodone for the pain. I am allergic to tylenol, NSAIDS and many of the medications that could help. 2 medications almost killed me. So the doctors and I choose medications wisely. They value me and the fact that I know my body best and they respect it, so I have a great deal of say in my care. This week, I have to have 2 different kinds of MRI's, an upper endoscopy, and 5 more tests

—Guest firebuffsgirl

my symptoms

I spent many years trying to find out what was wrong with me. I am an RN and not good at being a patient. I have chronic diarrhea up to 20 times a day and am always incontinent so I don't go out much and if i do I wear adult diapers. I have POTS, lymphocytic colitis, have had 2 heart attacks, chronic nausea and vomiting, my heart rate drops into the 30s when I rest at night and up into the 200s with activity, I fainting spells and currently have a fractured jaw from the last on a week ago. I have weakness, need frequent naps, it takes me a whole day to recover from one shift at work, I have very low blood pressure, unsteady gait and now it is believed that I have chronic pancreatitis since the sudden onset of it last year put me in the ICU, I have no muscle tone in my rectum, have had a hysterectomy due to chronic blood loss causing anemia. Some days I can't even think straight and on multiple occasions I have had to ask my husband what our address is or our phone number.

—Guest firebuffsgirl

Research Helps Me.

Medical sites help me understand my IST and dysautonomia. After reading up on the issues I feel so much better than I'm not alone!! Many doctors over the last 10 years have said its all in my head. My current heart doctors are the ones that have been the most supportive but it took them about 6 years to diagnose me. Overall I suffer the most with heart palpitations, chest pain and stomach issues. The chest pain gives me anxiety. I dont like to admit it but Prozac has been useful for me. I dont like taking it due to stigma but it helps me "ignore" the chest pain and palpitations when they happen. My heart doctor also says to drink a lot of water and eat a lot of salt. I have low blood pressure so I can get away with the salt. Currently, I am not on any medication since my husband and I are trying for another baby. My symptoms actually improve when I'm pregnant which I think has to do with my blood pressure increasing during pregnancy. Anyway, thanks for this site, it helps easy my mind.

—Guest LoWA woman

Inappropriate sinus tachycardia (IST)

I have suffered with IST and other symptoms for 10 years. It started after a major car accident where my sternum was cracked. I was 22. After the accident, I was hospitalized for heart arrhythmia yet no heart damage. I recovered from my injury but the doctors put me on Prozac for 2 months. I was symptom free for 4 years then I had an IST attack. I was rushed to the hospital and the dotors used drugs to stop my heart twice. It sucked!! The treatment helped slow my heart down from 250+ bpm to a range of 100bpm. After the episode I was sent to internal medicine. They said it was all in my head. I noticed my IST was triggered by eating. I then went to a stomach doctor. They found that I also had a paralized stomach. I've been unsuccessfully treated for both IST and my stomach. Recently I have been experiencing uneven pupil dilation and tingling in my feet and hands. I think my autonomic nervous system was traumatized by my car accident. My heart doctors have been the most supportive of all

—Guest LoWA woman

Treatment hopes

I have recently come to believe I have dysautonomia associated with Multiple Sclerosis. This was kicked into high gear when I recently took a course of prednisone for facial swelling that turned out to be associated with mono. For some reason, I still believe those with MS ought to be immune to other illnesses. Anyway, along with pain and bowel/bladder issues that come with MS, I have struggled for years with an inability to regulate my body temperature. I now cycle from chills to sweating several times per hour, round the clock. Any suggestions for symptomatic relief?

—Guest Brenna

It got better.

I was diagnosed with dysautonomia about two years ago. I had been removed from school, as to not aggravate the symptoms with stress or over-exertion. After going to my doctor time after time, I ended up with a few medications, and the (fantastic) advise of drinking about 70 ounces of liquids a day and increasing my salt intake. This, apparently, balances your electrolytes and helps with fatigue, fainting, and heart palpitations. It worked. I am fourteen now, and returned to school full-time a month ago. My advice, if you have dysautonomia, is to find a doctor that understands your symptoms. They may not understand 'dysautonomia', especially if they're older, but that's because the disease was only deemed such recently. Many doctors know it simply as a no-name condition that happens to select people. After that it's just finding the balance of liquid and salt intake, medicines, and your symptoms. This condition isn't always easy to fix, but it can be. I wish you all luck.

—Guest Ashley

Im Not Coping

It has developed into chronic panic attacks for me and the only relief is with lorazapam. I dont want to become addicted. Im so despondant that Im thinking suicide would be a better way out. Anyone, please help me.

—Guest Ellary Branden

nearasthenia ect

I have had all or most of the symptoms mentioned here .First started as a child with intolerable blinking and twitching and making strange sounds .It left me for several years in my teens in happier years Then at 27 after a divorce and years of worry i found myself holding on to the side of walls coming home from work after six years of seeing doctors .while living in the city a girlfriend called out her own dr after i found myself crying sweating being sick and feeling like dying . He arrived on sat night sun 1 pm one look at me and he asked if i had had some long term worry ,i said no not knowing he gave me two tranqulizers and a prescription for valium 20 minuites later i felt like a human being I had suffered chronic stress for most of my life due to a drunken stepfather who beat my mother and was never ther to care about his own children.It made my mother a nervouse wreck and left me one too .that was over 50 years ago . i now struggle with anxiety depression and ibs fof life,

—Guest Raymondo

Cognitive problems in POTS pt3

Because it hampers my job, + my boss realises this, I am going to be given a less stressful/responsible job somewhere in the firm which I consider very, very considerate of my Boss + very lucky for me. I am currently on Propranolol (beta-blocker) + Lexapro (SSRI) and feeling much better but still have symptomatic days but not as much as before. I really appreciate these forums. It helps me realise that I am not alone + its not all in my mind, even though some of my family + friends would like to suggest it is. I especially hate when they say 'But you look really good!' I may look fine but sometimes I really feel awful. I sometimes push myself to go to work because I get fed up with this illness. I get away with it sometimes but sometimes I am in bed the whole of the next day. I am beginning to keep a journal + I find it helps. I also wear calf supports to help with blood pooling + eat lots of salty snacks + drink lots of water. Luckily I live in a tropical cntry + drink coconut water

—Daledegannes