Hello and thanks for having this resource available. I have enjoyed viewing this site and found it encouraging.
I am not sure if I actually have dysautonomia, but highly suspect I do. I live in Lima, Peru, and tho my Spanish is functional I wouldn't call myself fluent, and am still digesting all my cardiologist here is telling me.
In 2005 I had a bad bout of campylobacter with high fever for a week, and severe gastro problems for about 6 weeks. About 2 1/2 months later I started having what I call arrythmias and light headeness accompanied with dypsnea. I was still active, even playing hockey for up to 2 hours, but experiencing "strange things in my chest" especially at rest.
This went on for almost 3 years and I have just recently went to a doctor here in Lima when another symptom occurred, namely that I am constantly aware of my heartbeat, and I do mean constantly. (not beating fast at all, but pounding)
An echocardigram revealed MVP (it closes completely flat) and a leaking pulmonary valve. My Dr. here placed me on a beta-blocker which has really helped with the palpitations, and helped some with the frequency of arrythmias.
On top of all this I have noticed that I cannot handle stress well now, I startle very easy, I do not sleep well at night, I often have the sensation of all the small muscles in my core (trunk) of my body shaking when I wake up, I snap at my children and I sometimes cannot stand to be in a crowd. (I feel overstimulated when there are lots of sounds, lights, etc.)Not good in Lima where 7 million live in a small area!
I was not this way at all before 2005, and my illness and the following change in my heart.
Does this sound familiar to anyone?
Any experience or knowledge would be greatly appreciated. Thanks in advance.
Keith

Dear Keith, all of our trips into Dysautonomia have been different. I think all of your symptoms are seen amongst us. Most of us don't have access to knowledgable doctors on this subject they are just practicing physicians. I say this because I have had it for 46 years and only my first M.D. who actually witnessed my worst blackout and total loss of blood pressure truly has ever tried to fix me. We have more tests now like MRI's etc., but I am still seeing from reading the sights and chats that no real progress has been made other than 2 new medicines that seem to have promise. They are Midrodrine and Mestinon. I myself take Florinef to hold up my blood pressure. There are a lot of things to deal with moods, muscles, sleep, stress, heart etc.
You seem to have a clear picture of what caused your problem. Most of us can only suppose what caused ours. I am not familiar with a "leaking pulmonary valve". I myself take Atenolol and Lanoxin for my heart problems and Synthroid for slight hypo-thyroidism. All of these can have serious side effects. I read my prescription warnings and don't take anything that isn't absolutely necessary. Doctors basically can only treat the symptoms and all of the treatments have side effects. If you have a good cardiologist and he likes you and trusts you and you like and trust him. Then stay with him for the long haul and he will learn first hand about dysautonomia and help you the best he can. You will survive I just know it.

Thanks so much for taking time to respond.
I have an appointment next month. I plan on discussing the possibility of dysautonomia with my Dr, my problem is translating that term into Spanish. I usually do okay in "making up" my own words, this one is fairly technical, but I'll get thru it.
Thanks again!

Welcome Keith,

Sorry that you are having these problems, but I must say that you have found a great site. I would suggest that if possible, print out as much that you can so it will not be "hard" to explain what you are feeling and trying to explain to the doctor.

I hope that you can get a correct and fast dx.

Tammy

Hi to Tammy C. and Keith C.
I think of all the articles I have seen on POTS that DINET had the easiest to understand. I printed the entire article and took it in to my P.A. He asked permission and time to read the whole thing. Afterwords I was amazed at him it looked as though he had heard these symptoms before. He said he needed time to find what kind of doctor I needed to see. It's been 2 months now so like I said it isn't going to kill you, so there is no priority in anyone fixing you and there is really not much money in a cure. Keith, find a really good article, have it translated into spanish and take it with you. Your doctor may greatly appreciate it. I get a little curt sometimes and I don't mean to. While my P.A. was reading the information on Dysaut his nurse popped in and said he was late for his other patient and he said he was busy reading but then he second thoughted and told me he would be back in a minute. He kept his word and he finished reading it and then he had me tell him my whole story. So Keith just don't let anyone tell you it is all in your head,trust yourself, keep your pride and see your doctor. HL

I really appreciate all the input! I know that none of this is in my mind, the symptoms are all too real. What they are is unpredictable. I have good days, and bad days. Man I have so many other questions!
I know caffeine, lots of sugar, and aspartame all give me fits, and even suspect that milk gives me trouble. Does this sound familiar? I have more symptoms when at rest than when up and about or even excersising.
My Dr. here wants me to lose weight. My BMI is 28.5, which is high, but does this fit in with anyone? How many other men have these symptoms? Am I in the minority as a male with this condition?
Who else has the constant pounding heartbeat, and what do you do about it besides meds? Is there a better diet to adhere to?
Sorry to ask so much, but I have felt quite alone with this thing for going on 3 years. I hate to worry my wife, so I don't bug her much about it. The first 2 Drs I went to told me to get Psychiatric counseling because there was nothing medically wrong with me. In their dfense my current Dr (Cardiologist) has prescribed Xanax on an as needed basis, and it really seems to help me, but I am afraid of it a bit because I have read that it is very addictive. I only take it when I get "stressed", but that is often. Sorry to ramble on. Any further insight will be greatly appreciated.

Hi Keith - welcome to the forum. You are definitely not alone in this anymore!

I was diagnosed with POTS, inappropriate sinus tachycardia and other atrial arrythmias almost five years ago after a pretty long journey of symptoms and problems.

Caffeine and sugar are HUGE no-nos for me. They will send me to the moon! Caffeine especially will aggravate my heartrate. It can be very bad for us "potsy people". I also suffer from what I suspect are food sensitivities, especially when my symptoms are flaring up. Other times, I can eat anything that's not too sweet or high carb(and NO chocolate for me). Most of my symptoms are aggravated by standing but as I just wrote on another post I do have trouble at rest, especially if I have been active right before. I have good days and bad days as well. For me, I will have a period of good days (I am always struggling with dizziness but a good day for me means I am functioning pretty well and not in bed and even able to get out and do some shopping or something) and then I will flare up for a couple of days where my heartrate is bonkers and I am extremely symptomatic no matter what I do. That's the nature of dysautonomia. I consider myself blessed though because many on this forum are suffering so much more than me on a daily basis. I am very grateful for the good periods...
You asked about the pounding heartbeat. Many with POTS are much more aware of our heartbeats and do experience the pounding. This can also be a symptom of IST although you said your heartrate isn't always fast. Other than meds, the only diet related thing I do is no caffeine, light on the sugar and I don't eat meals too high in carbs because the digestion process can put extra pressure on the heart. I try to eat several small meals a day and keep my portions small.
This is a very frustrating, challenging thing to have. Of course you are stressed! By the way, Xanax has a calming effect on the vestibular system (according to my neurologist) which is an added benefit. Many of us need that extra boost to help us face how lousy we feel but it doesn't mean it's all in our heads.
I was fortunate to find a knowledgeable Dr. who is amazing and I hope you can too. Don't give up until you do. You deserve to have your symptoms recognized and diagnosed properly. Good Luck - all the best!

Dear Keith: You betcha, any beef product will give me rheumatoid pain in my muscles within 3 days of consuming an untolerable amount. After being off of beef products for 2 years I find I can tolerate a little bit of cream cheese every now and then. If your knees feel they need to be replaced, but x-rays and MRI's show nothing; try getting off of acids completely for awhile and then if for a day you don't need to climb stairs; have a salad dressing. You will be able to tell if it affects you pretty quickly.

Sounds like you really want to feel better. I will help you all I can.

quote:

Originally posted by Rosie:
Hi Keith and welcome..

Maybe in addition to translating Dysautonomia, you could also try Orthostatic Intolerance, and/or MVP Syndrome. There are various terms that sort of Take care.

Hi Rosie: You are a great source of information. I just printed out the article you mentioned and want to spend some time reading it. Adrenal surge can put me down for days. Trouble over a neighbors dog(of all things) put me down for 4 days. I see my P.A. Tuesday and want to have a "catchecolamine" test done. Thanks for the help. HL