does anyone else feel this way

[dana lenhart]

Hi all,

Is it normal to feel all right in the morning and then be at work for a few hours and want to pass out from being so dizzy? I used to work 40+ hours a week and now I can only work about 25. Some times just sitting on the couch I feel dizzy. Does any one else? At times I can't even walk out to my car. Is this "normal"? Does anyone know how someone gets dysautonomia and is there any thing I can do to help with the dizzyness? I also have been having a hard time sleeping even though all I want to do is lay down. Why? Are the headaches appart of this also or is it stress?

Dana

[Evie]

hi dana, i just replied to your other thread and i tried to answer some of the questions there

ultimately there is little known about this condition so im afraid we may not be able to answer all your questions (we are asking the same ones though! hehe)

And yes ... i would say 99% of us get frustrated ... you are not alone in that department

[Cosmetologychick]

Hi Dana!

welcome! I too just joined recently, and it's wonderful to have people here that understand what you are going through.

I too feel fine in the morning but a few hours into things go down hill. I am in Beauty School and started doing 35 hours a week & now i'm lucky if i get in 6-10.

I have not found anything that really helps with the dizzyness but i'm still looking. And the not sleeping well i have just learned to deal with, but the headaches for me have seemed to lessen because i was put on a motrin diet for other reasons but it has seemed to help.

Most of it is normal in my opinion because i deal with it everyday.. but you should try to talk to your doctor to see if there are things you could be doing or taking to lessen some of the symptoms. I hope things get better for you!

Hillary

[yogini]

Hi there. I can certainly understand how you feel frustrated. I think that a lot of the symptoms you are having sound pretty common for POTS. It helps to get a good POTS doctor if there is one in your area. Also, are you taking any medications?

It's interesting that you feel better in the morning. I think most people on this board feel much better at night, because they get dehydrated in the morning. But I can understand what you mean. I think get worn out during the day and I take my medicine in the morning, but it starts to wear off by the evening. So when my symptoms start flaring up, it's usually later in the day.

In terms of how you can get dysautonomia, some people are born with it, and some people get it after pregancy or a virus. There are other causes too. There is really good info on the Dinet main page in terms of causes and treatments.

http://www.dinet.org/what_causes_pots.htm

http://www.dinet.org/what_helps.htm

[michiganjan]

Dear Dana,

There are several different kinds of dizziness. It can be caused by a sudden drop in blood pressure, vertigo, lack of enough oxygen to the brain, and other causes.

I have all three kinds I just mentioned on occasion and I have learned to differentiate between them most of the time. People with dysautonomia often suffer from dizziness. Those with neurally mediated hypotension also pass out. I have POTS and I am not a fainter, but I sometimes wonder how it is possible to feel so completely dizzy and not faint.

There are medications that can help with the dizzyness that comes with dysautonomia. It sometimes takes trial and error to find the ones that work best for you. It is best if you have a doctor prescribing who is knowledgable about dysautonomia.

There is a listing of the known causes of dysautonomia in the info section of this website.

It is quite an adjustment when one first finds out one has dysautonomia. However, living with it is doable when you find the right meds or things that help you.

Michigan Jan

[ariella]

Dana,

I can really relate to the frustration. I'll be doing fairly well and functioning, and then all of a sudden need to stop what I'm doing. Like I start cooking dinnner and then don't even have the energy to put it on the table, let alone sit at the table.

My dizziness improved with medication. At first I was taking midodrine, but now am taking mestinon and as long as I don't overdo or eat too much or eat things complex (like something with a lot of carbs, or something with too much sugar), the dizziness usually doesn't come on.

Hope this helps.

Ariella

[BuddyLeesWife]

Welcome Dana -

I just posted a duplicate of rqt9191 suggestions for where to find information. Not fun reading but worth the effort to learn about this disorder.

[melly4]

Hi, Dana. Standing or even sitting still for a long period of time can make your blood pool and cause the syncope/near syncope issues. Try to plan your day around not having to be still for long periods of time. For instance, go to the store when it's less likely to be crowded and have long lines.

And, yes, I'm also a member of the chronic migraine headache club.

Hope this helps,

Melly

[ar1281a]

Hi Dana,

I'm also new to this forum...and I'm glad I found it!! I can really relate to what you describe. Dizziness!!!! I hate it!!! and like you, I seem to wake up sort-of ok in the morning adn a couple of hours into it, it feels like a truck hit me! I feel lightheaded or dizzy and can barely do anything. I have not been formarlly dx with POTS.....yet, but I relate so much to sx described here that can't really imagine what else it can be. My previous GP didn't know what to do w/me, my new GP listens and is at least trying to rule out what can be causing my dysautonomia. I was sent to a cardiologist who sent me right back to my GP!!! guess he didn't know what to do with me. Oh well, just wanted to say hi and thank everyone for such a great forum. Andrea

[Dizzy Dame]

Hey there Dana,

I always feel my best in the morning. My worst time is in the evening from about 7pm-12 am. I can say that there is nothing "normal" about POTS: everyone has variations of the theme "tachy when standing". But, alot of us have similar symptoms doing certain activities (like hot showers for instance).

By the way, welcome to the fourm! (where are my manners?). I hope you find lots of friends and support here

- lauren

[Aprilmarie52]

I have a very hard time with flourescent lighting so I often feel bad after a few hours of work. I have to go outside or into the office with the lights out for a few minutes to get my composure back.

[Eillyre]

Dana, a fair bit of what I was going to add has already been mentioned, so I'll just toss in a little more.

Yes, I think we all get frustrated at times, especially at the beginning. It's hard to to get diagnosed with this wacky condition and spend so much of the time unable to do normal activities. Do try to get in to see someone who understands dysautonomia & start testing medications -- my symptoms are pretty well controlled on meds.

In the meantime, be of good heart! It does get better! In time, if you work at it, you'll get to know your body's triggers and responses pretty well -- the my-BP's-dropped-because-the-shower's-too-hot dizziness vs. I've-overexerted-myself dizziness, etc. You'll have to re-adjust your physical expectations of yourself to handle the daily change in ability (which was very difficult for me -- rather plough through pain than make myself do less, but I've since learned! ); it's just part of the process. Remember, this is not a death sentence by any stretch of the imagination! It's up to you how you handle this new challenge -- crack jokes from down on the floor, learn to happily work around your new limitations, and dazzle yourself with your creativity in modifying potentially dizzying situations!

I tended to feel far worse in the mornings (felt best about 11:00am-3:00pm), but towards evening after the long day, my symptoms would start revving their engines. I've felt dizzy sitting up, lying in bed, walking...in all positions...the full reperatoire; fainted fully twice, too! However, I was usually upright to some degree (sitting or standing). It's annoying, but you'll learn how to minimize the likelyhood of it happening. Try to pay close attention to patterns in your dizzy spells -- do they come when you've been using your arms above your head, or been near a heat source, or been changing level (sitting, standing, reaching down and coming up too fast, etc.), or haven't had enough sodium, etc. The study of yourself can be VERY useful; see if people living with you are noticing any patterns, too. It won't solve all of the problem, but is a great preventative measure and helpful for your doctor to know also.

As for the headaches, I'm afraid many of us get them too. I'm not much help there.

Angela

[Sunfish]

unfortunately frustrations seem to be part of the package. they don't have to take over your life but i know that even though i'm generally a pretty upbeat & positive person, the frustrations of having to accept limitations, fight symptoms constantly, etc can be really overwhelming. and whenever anything is "new"...be it the initial diagnosis, a big change in symptoms or how they limit your day-to-day activities, it's also a whole new level of having to accept. not accept as in not continuing to fight toward feeling as good as possible, but accept in terms of not staying under the covers 24/7 (hmmm....not that i've ever been tempted to do this ). it's a balance that constantly seems to merit readjusting....and is much easier said than done.

re: the timing of symptoms, i tend to follow angela's pattern...mid-day is usually my best b/c i have really rough mornings, perhaps due to meds not being kicked in fully & hydration issues, but as the day moves on i definitely get more worn out. of course it depends on what i'm doing too....and when i initally was diagnosed i was still a morning person...including 5am rowing &/or 6:30am Army PT. how on earth did i do that??? i think i'm stealing this analogy from someone else, but i think someone may have snuck a body transplant in on me in my sleep at some point!

but i am totally digressing.....

bottom line is that while there are many parallels, similarities, patterns etc. in the dysautonomia world, we're also all very individual. and what can be "normal" one day may change the next. for me that's one of the toughest things. at points i've been in school or worked full-time in addition to "extra-curricular" music, church activities, sports, social life, etc; and then this past year i've been on LTD & am struggling to take a few grad school classes.

re: ideas for "what helps", the links others have posted are great places to start & include things you can try on your own as well as things to bring up with your doc.

i hope you're able to get some relief soon!

melissa