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dana lenhart
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Hi everyone,

I have been diagnosed with dysautonomia within the last couple of weeks. I am very confused about what is going on. From what my doctor said it was because of a virus I may of had. From what I am reading it has nothing to do with a virus. I feel like I am going crazy. No one I know has ever heard of this and I can't seem to find alot of information on the internet regarding this. I was hoping someone out there could help me with some questions I have. Please!

Thank you,

Dana

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Welcome Dana. I would begin by reading through some of the previous posts and doing a search regarding areas you would like to know more about. This is a very friendly (albeit sick!) forum and you will find much support here. Feel free to post specific questions and we will help if we can. Good luck!

Carmen

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Welcome Dana.  I would begin by reading through some of the previous posts and doing a search regarding areas you would like to know more about.  This is a very friendly (albeit sick!) forum and you will find much support here.  Feel free to post specific questions and we will help if we can.  Good luck!

Carmen

Hi Carmen,

Thank you for the info. I will go through the posts. Do you know how you get dysautonomia? Is there anything I can do when I feel dizzy?

Dana

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Hi dana! :)

Alot of people get it from a viral infection or a illness ... as far as i understand one theory is that since you lay down so much your body trains itself to to think that laying down is normal so then when you get up it gets confused and you get dizzy.

That is why many drs say "get out of bed and walk no matter what!" , because they think you can retrain your body. Some people get great results with forcing themselves to be mobile. (i am not suggesting you do this ... i couldnt do it when i was first diagnosed, i just looked at the dr like he was asking me to fly to the moon)

For me florinef has helped me alot, it helps keep your blood pressure up so you dont get so dizzy. All the medications are very personal so what works for some wont work for others. There are other meds like mestonin and beta blockers, however i dont know much about them sorry.

For non medicinal treatments when your dizzy many people will eat salt or sugar, or drink things like powerade. Make sure you are always hydrated. I also found i improved no end when i moved into a house with air conditioning. Most of us are sensitive to heat, others are sensitive to cold ... so its really just working out what is best for you.

Here is a list from this site of what to avoid ... it may help give you some information :)http://www.potsplace.com/what_to_avoid.htm

I hope you are one of the lucky ones that manage to recover from this quickly! :)

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Dear Dana,

Welcome! You found us sooner rather than later which is a good thing so you can learn from us. Dysautonomia is a group of symptoms, and different for everyone. All of us can identify with the frustration of dealing with an uncooperative body. I care. -Deb

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Hi Dana,

Welcome

If I'm not mistaken, dysautonomia brought on by a virus has a better prognosis, and is more likely to go into remission. OT?

Evie mentioned exercise. My doctor told me the same. I take walks every day, rain or shine. I feel much sicker if I don't. But I'm able to do so only while medicated. Did the doctor suggest a medication? I "weathered it" for about 10 years before I was treated. The doctors attitude years ago was that it's just an annoyance, not dangerous, so why treat. I am much more functional with medication.

Good luck!

Ariella

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Welcome :)

I was just wondering if lenhart is your last name, and where are you from? I know some lenharts that live around me. (I live in Ohio)

You will find alot of info and good people on this forum. I was just diagnosed in this past July. Good luck.

Tracy

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Glad to meet you on the POTSPLACE! We are a very friendly and supportive group. Feel free to ask questions. Do serious reading on this site as well as other sources. You soon may find that you are better versed in dysautonomia than many of the doctors you and others of us here have had the unfortunate occasion to cosult.

Welcome aboard!

Lois

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Dysautonomia is a mysterious illness that has links to many disorders. For some it is a primary disorder for others it is a secondary disorder. Basically, with dysautonomia, the autonomic nervous system is "out of whack". I tell people I'm like a computer with a glitch. Whereas, you can "reboot" your computer, you can't "reboot" your body so we are stuck with a myriad of sxs. Some people get dysautonomia secondary to diabetes, others get it from tick born illnesses, or just bad viruses. Pregnancy induced hormones wreck havoc on others. Mitral valve prolapse is/was my "primary" diagnosis (before my sxs continued to worsen and I got some other diagnoses to boot). Most people get better but many do not. Some people have been sick their whole lives and others had sudden onset. The level of disability varies so much from person to person and even within a person. Some have peaks of valleys of years of relatively "good" periods and years of acute but chronic sxs. Unfortunately, for most of us on the board we have a lot of bad times. Our good times may come in years, but more often than not, they come in months, weeks, days, and for some, hours. I am in that particular group. I am home as some of the more active members on the board are (we have more time to be on the computer!). Many with the disorder work or go to school. There just simply is no typical path.

As far as what helps when you get dizzy, it would depend on what is making you dizzy. If it is a blood pressure issue, fluids and salt as well as the drug Florinef have helped many. Personally, I am on daily iv treatment for "hydration therapy". In other words, I'm like a car with a gas leak- I have to keep putting in the fluids because my body is unable to maintain them without some help. Most people don't require this extent of treatment. Most of us swear by salt. It really isn't the salt you need so much as sodium. Condensed soup (thin out with just a little water) is a great way to get a lot of sodium quickly. If rapid pulse is your issue, then beta blockers can be helpful but they don't help everyone and can even cause more problems for some. So, it is important to have communication with your doctor regarding what helps and what dos not. Unfortunately, it is often trial and error to see what works and even once you find a suitable treatment the the treatment may need to change as time goes on. This is not a fun club to be in, but we are here and we are here for each other. So again, welcome. Hopefully, I have helped with a couple of your concerns.

Carmen

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Welcom and sorry you are here but we are a good group and can help if we can. I think you should start by looking through the pinned topic at the top of the forum called Help yourself to Answer Common Questions. A good place to start and just by reading POTSPlace's articles on dysautonomia. Also if you list what your symptoms are people might be able to give you more help. We have a lot of knowledge on this and as someone esle said most of the time we know more about it thatn our regular doctors.

Hope this helps and remember you are not alone!

Stacey :-)

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Welcome, Dana.

My son and I have been told that our problems originated from a viral illness, and that the predisposition to dysautonomia is thought to be hereditary. We have a lot of this type of stuff in my extended family. I hope you find answers and encouragement from the wonderful folks here. We certainly have!!

Melly

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Welcome Dana! I'm so glad you found us! :)

Yes, POTS can be very confusing (even for the MDs! :( ); it doesn't help that there is a shortage of reliable information about it. THis is a fantastic site, though; lots of very good medical info & other people's experiences to draw on. Feel free to ask all the questions you want!

As Carmen said, the POTS path tends to be pretty individualized although the general info you find on Help Yourself will probably come in handy. My case seems to have erupted out of nowhere (no virus, pregnancy, sudden trauma...zilch); still a mystery! :)

Please feel free to PM me anytime with questions or if you just need to talk things through!

With love,

Angela

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hi dana -

welcome! i'm sorry you have reason to be here but glad you found the forum. others posted great places to learn more about the world of dysautonomia. there is TONS of info on this site - on the main pages & within discussions - that will hopefully be helpful. there are lots of unknowns still of course, and things are continuously being learned by the professionals & by each of us as we traverse our own paths.

and yes, viral-onset is one of the prevalant theories of onset for autonomic problems. while i may have had a predisposition to problems, we think my i have an autoimmune neuropathy that was triggered by viruses...initally mono.

hang in there,

:P melissa

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