If you are new and/or a seasoned professional at vestibular issues I highly reccomend writing/typing your symptoms on a sheet of paper. State them very matter of factly to give to all medical professionals you see!

For example:

Name:
Date of birth:
Date of onset:
Symptoms: (fill in your relevant symptoms)
-rocking sensation 24/7 inside head (i.e., as if at sea, some days on a boat on the ocean some days on a pond)
-sound of my own breath and voice in my ear when talking breathing
-intollerance of movement(driving makes it worse)
-Insomnia (not sleeping)
-Fatigue (limbs feel weak and rubbery)
-Flourescent lights exacerbate dizziness
-naseau (eating makes rocking sensation in head feel worse)
-trouble focusing on objects far away with eyes
-ear pressure (left side only)
-inability to concentrate (particularly in crowded loud areas)
-tremors (hands shake and body convulses uncontrollably at times)
-loud noises increase rocking sensation and naseau)


{Dizzy and vertigo and such commonly used terms, misused in the medical community. Find a sensation that describes what "you" are feeling. Are you feeling as though you are on a boat, some days on a quiet pond? Other days on a stormy ocean? What activities make it feel like an ocean verses a pond? Do you know? Do you feel as though the world around you is moving or are you the one in constant movement? Is it 24/7 or does it come and go? Do you feel as though you're still walking/driving/biking/going up and down an elevator when you've stopped? Figure out a term to use when describing your particular "dizziness". Doctors hear and use that term a lot and it can mean 100 different things to 100 different people. It will help if you can very effectively describe what it feels like to you, in your head, through your eyes. Stray away from the term dizzy and figure out how to describe how "you", the sensation feels.}


Take the long "story" out of your "going to the doctor" symptom list.
List every symptom, even if you think it's not a big deal or related. (Right now everything seems to be going wrong and your body seems to be turning on you. It is! Calm down, breathe and put the actual feelings and symptoms into words of simple phrases. You can do it.)

Try not to write a paragraph for each symptom, spell them out in as few words as possible. Number them and keep the description short and as pointed as you can. A lot of these symptoms don't seem to have a rational explanation or seem to be related. They are! This dizzy train is quite vast and fast moving and it's different for everyone and everything is noteworthy!

I'm hoping if all of us vestibular patients show up with our list of symptoms in our own words and provide those sheets to EVERY doctor we see they will start to see patterns and similarities.

I know as patients/we want to be heard, we want to tell our stories and try to get the medical professionals to "feel" and "understand" what our day to day lives are like. We so desperately want them to get the severity and importance of what we are describing. They won't. That doesn't work. What we as patients need to do is very medically and succinctly tell what our actual symptoms are. Even if there's 150 of them. I urge all of you to give your symptom paper to the medical staff to put in your chart/medical records! Give one to every medical professional you see, even your dentist, eye doctor, gynocologist, etc.

If you need to vent or share your entire story and day to day struggles, do it here, write in a journal, type in a blogger online, find local support groups and if there's not one in your area, start one! Medical personnel are there to help but they can only help on their terms which is limited.

After giving medical professionals your symptom list I would require them to read it over with you, allowing for you to explain and expand in person. Require them to go over it with you, in front of you. Their intake forms are standard in impersonal and it's important your exact words are read and heard.

This is a very easy thing to do and it will make a huge impact on the care you receive and the understanding of your condition.

Also include a download of the DizzyTimes.com poster!

Hugs for all of you! I join the fight to increase awarenes and conquer my own misdiagnosed condition. Best of luck to you all. I believe we will ALL heal, for now that is all I have to hold onto!

Lisa Lisa

:girl_angel:

__________________
xoxo

LisaLisa