How do you cope?

[Traci]

I feel like I am going a little crazy, mainly due to Dr's responses to me, and of course my symptoms.

Last night I went to the emergency room because my BP was high and of course my heart rate was high. They did an ekg, which turned out normal of course.

They then concluded it to anxiety. I may be having a little anxiety when the symptoms come on but I know they are not been caused by anxiety.

The autonomic Dr I am suppose to see is on holidays until the 18th of this month, unfortunately.

I'm getting a little used to the HR increases and decreases, but now my blood pressure is going up and down and it seems to be doing this hour to hour and at times it feel like parts of my body is burning. It's hard to cope with this Bp situation. I am also getting headaches with it.

Is this a normal happening with autonomic problems?

Traci

[MightyMouse]

I don't know how to describe how I cope ...I just do. But I didn't want to leave your post with no answers before I head to bed. I try to think of the positives, let myself be bummed when I need to, but keep focused on other things than my health or it overtakes me.

My situation may not be the same as yours, as I've had symptoms all my life, so this is always how it has been. I often feel saddness for those of you who had a normal life and then suddenly became ill. I can imagine it's a total life shift, and it must provoke anxiety with the new and wierd sensations. For me, it's normal...I didn't realize the whole world DIDN'T feel like this inside until college.

You may want to use the search feature (upper right bar of every forum page) for the word "coping" or "coping mechanisms" and see what's been posted in the past.

As for dealing with dismissive doctors--nearly everyone on this forum has a story to tell along that line. There are some good doctors out there, but often they end up NOT being the first ones you go to see...don't let them drag you down. Do what's best for yourself...and find a different doc if all they can do is say your depressed (not that depression isn't its own disorder).

Nina

[Dawg Tired]

Coping.. Hmmm... Who said I was?

Well, okay, I had quite a pity party for myself for a while - several months in fact! Then I decided I just needed a different definition of "normal"! People who knew the "old me" will just have to take it or leave it!

Dismissive doctors? PHHHTTTT!!!! Nothing new there.

I, too have the problem of having the feeling that my skin is burning and being told it is in my head. Just think of how big our heads must be to have all these problems - no wonder we have brain fog!

[MomtoGiuliana]

Traci

I tried to send you a response last night and my computer froze.

I just wanted to say/add that, yes, the symptoms you are experiencing are typical autonomic dysfunction symptoms. Hopefully once you can see a specialist and get further evaluation treatments can be started that will help improve your well-being. In the meantime, you could try non-medical treatments--such as greatly increasing your fluid consumption, sleeping on an incline (head higher than feet), compression garments. You MAY find some relief from the blood pressure swings with these actions.

As far as the anxiety--that can be part of this syndrome too--or is just a normal response to chronic illness. Again, a non-medical approach would be to try some meditation--sitting or lying still and working on relaxing your whole body, for example. Or trying some gentle yoga.

Hope you see that doctor soon and get the guidance and treatments you need for your particular situation.

Katherine

[Traci]

Thanks for the advice and support.

I just feel, well most of the time these days, that I am falling apart.

My symptoms seem to be getting worse.

While standing straight today, I feel an out of it feeling and pressure in my head along with nausea, dry eyes and severe thirst. Also I've been getting this terrible achy feeling that is absolutely undescribable. It makes me feel like I am going to jump out of my skin. Hopefully going to see the Dr. that deals with autonomic problems will relieve me of some fear.

I've been drinking alot of fluids, but I'm a little afraid to over do it, due to the blood pressure going high.

On a sidenote, I saw a Dr today that actually understood my symptoms. He's a gp and can't do alot about them. He also noted that I have a high ANA with a certain type of antibody present. I don't know if this has anything to do with dysautonomias.

Traci

[MightyMouse]

Which type of antibody? I have a general ANA marker that's eleveated, and it stains speckled/pink, but my specific antibodies are fine. ANA can be elevated from medications, allergies, and basicly any type of infection or autoimmune reaction. Knowing a specific antibody, however, narrows in the focus of options.

nina

[Traci]

I don't quite understand the report but it states- The test for anit-neutrophil cytoplasmic antibody by pANCA was strongly positive.

It also stated my ANA also had nucleolar pattern.

Traci

[MightyMouse]

I looked up "anti-neutrophil cytoplasmic antibody" using google. It seems that it can be elevated when one has vasculitis...

http://www.google.com/search?hl=en&q=antin...ntibody&spell=1

anyway, you need to ask your doctor what the elevated antibodies mean for you, if anyting.

[MomtoGiuliana]

Traci

I also have high blood pressure with my POTS. I know it is counter-intuitive, but, my bp goes up when I am dehydrated and goes down to normal or lower when I am drinking a lot of fluids.

Katherine

[Guest Julia59]

Hmmm----coping---well that's a tough one. I found that letting myself have those long drawn out "feeling sorry for myself" episodes works well. What I mean by this, is if i'm down in the dumps, I find that if I just let things take their natural course I feel better. I try not to be too hard on myself, although at times it's hard with this up and down cycle dysautonomia can do to us.

I also found that during my down times I do my best thinking---and this helps me sort things out. This usually results in positive outcomes because I tend to find solutions to some of the things that feel so out of sorts. As you can see there is just a mass amount of ignorance as a whole in the medical profession---and unfortunately if affects all of us to a certain degree.

You have to lift yourself up above those ignorant doctors, as you probably know more then they know about dysautonomia--POTS---ect. I don't understand it myself---all this ignorance about the ANS---as it runs all of our involuntary functions.

So in our mind we wonder how in the world can doctors be so dismissive when our heart is flipping out, our BP is crashing, our food can't be digested properly, and the terrible fatigue---ect. ect. This is kind of a no-brainer----that this indeed is important. So this just adds further to the confusion in our heads.

Take heart-----------this just proves that our mind is indeed---"normal", just from the fact that we know something is terribly wrong for doctors to be so dismissive of a disorder that can cause so much to go wrong with our body.

Keep in mind there are Doctors out there that are fantastic, and they have done good things to makes us feel better, and they do their best to keep researching. Keep your chin up and be persistant until you find a doctor who respects you and this disorder. It's always best to find one that has experience with ANS dysfunction. I have heard of some who were also willing to learn. Some PCP's are great at working with a doctor who specializes in POTS/Dysautonomia.

When things get really tough---I read---read ---read. This forces my mind to focus on something else, and this helps the crazy feeling to go away.

Please excuse the long post (bit long winded today)---I hope you find the right medical care to help you manage your symptoms better.

Take Care,

Julie