Hello,

I've recently been diagnosed with dysautonomia, but my symptoms and my story go way back. I was first diagnosed Chronic Fatigue Syndrome back in 1999. Then for the last couple of years I had nausea episodes now and then, I went to a doctor, the made a lot of studies and diagnosed irritable bowel syndrome. Then I started almost fainting and feeling really sick at times, until I had a huge episode where I almost faint apparently a low blood pressure problem. Finally a doctor suggested I went to see a Cardiologist and with the tilt table test was positive for neurocadiogenic syncope. I've started a treatment, but I really never got a full explanation on the diagnose or the illness for that matter, or maybe I was not ready to understand it and listen to it. My expectations were that as soon as I started the treatment I would feel as good as new. I am 30 years old, and I used to be known for my energetic personality. Now I have days were I don't even want to get up from bed. I am exhausted all the time, dizzy, sometimes I get headaches and irritable! Some other times my neck hurts a lot, and I am frustrated and quite sad! I think is hard for me to have to face that my life could have sever changes. So far I've had a successful professional life. My job is demanding and stressful, and sometimes I can´t even get to work, or even focus or concentrate at work. I wouldn't like to lose my job, I work for a mutlinational food and beverage company and I am about to get promoted. I am hesitating if I should take or not the opportunity because I am not sure if the dysautonomia is going to allow me to put up with the challenge, and I don't feel like people around me, understand what's going on. This includes my work collegues, my boss, family and my husband. I am quite sad and feel very alone in this.

first and formost you are not alone. There are many of us who hide how we really feel from our loved ones and our co-workers. I have been fighting this thing for 10 years now and I only work part time but the days that i do work I am so exhausted that all I want to do is hit the bed when I get home. This illnes is misleading because on the outside you look health the majority of the time but as the day progresses so does the physcial indications that something is wrong. Cold weather usually makes mine worse and so does air conditioning. So the days I work I make sure I have a jacket I can put on or I use a heating pad. I am lucky that my cubicle is in a corner and when anyone says anything about the heating pad I make up a story about my back bothering me. I can get away with it because I have had by back fused. I suggest that you see someone like a therapist as an outlet to vent and for your depression and anger managemnt. Eventually this stuff will make you get very testy and a therapist are trained to be objective and to be a sounding board. I know if I did not have that outlet that my marriage would be suffereing more than it is because of this illness and I know I would not be liveable around anyone that I work with. Good luck.

Lu, I see you are in Mexico City. My husband and I lived there for over a year (and absolutely loved it: actually my husband grew up there as his parents were missionaries). I just wanted first to offer to put you in contact with the people from the church we attended there if you would like that: they are really wonderful and very loving group of people.

Second, have you researched at all the effects of altitude on dysautonomia? We actually had to leave Mexico City because I developed chronic mountain sickness due to the dysautonomia. Unfortunately it can have a very marked and over the long term a very debilitating effect on those with this condition. There can be marked improvement just getting out of altitude. I would recommend, if you suspect this, taking a vacation to a low altitude place like Acapulco and seeing if you feel better. I know it's rather overwhelming but if altitude is a factor, your quality of life may be much improved by a relocation.

Third, Here is a database kept by a doctor who speaks both English and Spanish and works with dysautonomia: there is a link to a dysautonomia database on the main page and a place to email him with questions: http://www.reumatologia-dr-bravo.cl/

And most of all, I just wanted to let you know that I have been thinking of you since I read this post and as the response above said, you are not alone. You are being thought of and prayed for. Be patient with yourself, and with your family. It's hard for all to make these adjustments but love 'bears all things, believes all things, hopes all things, endures all things.' Not that love never feels the strain -- it is really tought sometimes. But love is stronger than this sickness. keep hanging onto your love for them and theirs for you.

Praying for you.

(Lu I certainly ought to add that if altitude is a problem there are things like breathing oxygen, sitting in a hyperbaric bag a few times a week, that can be looked into before simply relocating to lower altitude -- unfortunately I was having a life threatening reaction by the time we realized what was wrong and we were advised not to attempt any such thing.)

Hi Lu,

Welcome! Unfortunately the sadness, frustration, and loneliness can be a part of dealing with a chronic illness. But here on this board are many people who understand and listen. The other board has more people who read the posts. (Dysautonomia Talk).

One thing that has helped me is figuring out the lifestyle changes that help me manage my symptoms. Stress is a big instigator of my symptoms so I have to limit my stress. I don't want to tell you what to do, but you may want to evaluate whether the job is increasing your symptoms and how you might be able to manage it? Maybe the promotion isn't worth what the additional stress will do to your body?

My thoughts are with you....

BRUGANDY, heidikay and WantMEback,

Thank you so much for your replies, I really appreciate it!! It is just so hard not to understand what's going on, and what to do to feel better. It's frustrating that my treatment was apparently working but know I've been feeling terrible for the past couple of weeks. I am really desperate and I think I haven't dealt with the fact that I might have to do some changes in my life, but I just don't seem to have the energy I used to to accomplish all the things I could in a day. My life is usually hectic and very active, and my husband has a lot of energy, so right now is hard to keep up with him.

BURGANDY, thanks for the at work tips. I am always freezing with the damn air conditioner and feel it will be overreacting going all dressed up, when everyone is hot, but I am usually cold, and my doctor at first said it didn't have anything to do with it. Because of what I read in tha NDRF Handbook, it does! So I guess I better be warm and perhaps I'll be more confortable huh?

heidikay, when you where diagnosed you where living in Mexico City?? What doctors did you see?? I'm afraid my doctor might have some knowledge about dysautonomia, but not fully understands. I feel he might know the basics, but maybe not in depth to help me faster. I will look into the altitude thing, it really never crossed my mind, since I've lived here all of my life, so I could be used to it, but it could definetly be affecting me. How helped you realized this?? Any other info you could provide me with will be very helpful.

Does this thing ever go away?? Have any of you have actually got yourselves back? Has anyone tried other things such as alternative medicine, for example refexology or something???

Thank you all!!

Lu, I was actually diagnosed in Arizona -- we didn't realize what was happening but had planned to attend an event there, went to the dr. there because I was such a mess, and were told not to return. Bang, there went my life again. The symptoms I was having were basically a shut down of the digestive system, severe nausea and dizziness, episodes of throwing up, very low blood pressure that was not episodic (84/50 at the doctora's office when I was having a 'good day') crippling fatigue, headaches, and finally the hysteria and inability to balance which developed towards the end and were evidently serious signs of brain swelling. I wish I could refer you to a specialist in Mexico City! Unfortunately the link I supplied is the only specialist I'm aware of who speaks Spanish and he doesn't link to specialists in Mexico City, but I would suggest emailing him (his email is on the page) and asking if he knows of a specialist in Mexico City as he seems very aware of this problem and the research/work being done on it in Latin American countries.

It's quite a process learning all the symptoms that are related to this, especially when your doctors are learning themselves! I'm just finding out all sorts of things and how they fit together, too (and it was really encouraging to find this board and realize other people are dealing with this for me, too).

I see! Thanks again for your prompt response. I think I am going to try a few doctors here in Mexico City, a Neurologist, an Internist and another Cardiologist whom according to a girl who I was put in touch and is dysautonomic as well, is specializing in it. If I don't feel any of this truly know what's going on, I am willing to to go the States to see a specialist. I don't know where would it be the best place to go though. I do know I hate feeling like this all day long! I just had an hour nap, after sleeping for 10 hours straight. I was feeling a lot better when I just woke up, but here comes the darn headache again!!! HELP!!!

Lu,

You asked for somewhere in the states to go to see a specialist. I live in Southern California, and there is no one in all of CA. After much diligent searching, I went to see Thomas Chelinsky, MD, head of the Autonomic Disease Clinic, at the Cleveland Clinic, in Ohio. My other option was to go to Vanderbuilt, but that's on the East coast. I cannot fly, because of irratic hypotension, so I had to take Amtrac; decided that closer is better, and went to Ohio, rather then Tenn.

Email me if I can help,

Barb

Hello Barb,
Thank you for your answer and advice on where to go, I'll let you know if I need more info. I haven't seen the cardiologist who supposedly knows about this here in Mexico because my appointment is until May 26th, he didn't have any earlier. I was so desperate that what I recently did was to go see and Alternative Medicine doctor. I started my treatment on Friday and I feel much better know, and the best thing is that she had heard and knew a bit about dysautonomia, she even told me that most doctors don't really know it and that I should see a cardilogist specialized in arrythmias, her brother happenes to be a cardilogist and he suggested the one I am going to go see, so I hope I am on the right track. I would suggest the alternative medicine as well, it was quite interesting, and so far so good!! Yesterday I was out partying with my husband as if it were my birthday, we partied until 4:30am and I do not feel as I would usually today!!

What in the world did the Alternative Medicine doctor give you to make you able to party like that? If it worked that well, I'd be interesting in ordering a year's supply!!!

hi there,

hey I'll take 2 years worth LOL. I haven't been able to party for a good 7 years now let alone stay up past 9:30 or so at night. This can be very overwelming and frustrating. It is definately life altering. A cardiologist daignosed me, so I think that's a good place to start. They can issue the TTT and find out for you, what it is you deal with, but bear in mind yoou can only continue to treat the many weird symptoms....as they come.....without having a known cure. Hang in there, and keep us posted about what your taking. suzq

Mollie and Suzq, wouldn't it be wonderful that we could do that? Just send dosages of whatever works for someone?? I know that symptoms come and go and that we have our good days and not such good ones. Right know I am going for my 4th good day in a row! Hopefully it will become a trend! I am being positive and repeating the same affirmation to myself several times a day: " My health is mental and perfect and so it shows" And maybe going to an alternative doctor could help too, or at list complement your treatments. My doctor was very clear that I shouldn't drop the medication I am taking and that I shouldn't stop the cardiologist's advise, but that this was going to help a lot. So far... so good!! I'll keep you posted!!