What do you consider a flare up?

[dizzyape]

I have read many times the term "flare up." I am trying to understand what symptoms this refers to. I am newly diagnosed but looking back I have had weird symptoms for years and years. Only the last 2 years have I started getting gastroparsis, dizzy spells and increased tachycardia. 

I had a hysterectomy in May due to heavy bleeding. Nothing was wrong with my uterus as it turns out, it was probably related to my dysautonomia. After my hysterectomy my tachycardia and dizzy spells got substantially worse.  I also have many new weird symptoms which just make me not feel good a large portion of the time ( feeling like I am walking on a slant, rushes all over my body that make my head feel weird)  I'm not sure if this is what you would consider a "flare up," but I certainly hope so because that would mean it would lessen at some point.

Please let me know if any symptoms I've described affect you as well.  My doctor at Vandy diagnosed me with some orthostatic intolerance as well as Ehlers Danlos 3.  I am waiting to see a neurologist for further testing.  My doc says he doesn't like the term dysautonomia because it's too broad. When I go to pages about just Ehlers I don't relate as much with the symptoms because I don't have joint pain or any dislocation.  I'm really hoping that the neurologist doesn't find anything life threatening. This whole process is scary and I never know if I should just ignore these scary symptoms that seem to always come on or run to the ER when I get them.

 

Thanks!

 

[vepa]

I consider flares to just be normal symptoms, except worsened. For example, I almost always get extremely dizzy and my vision blacks out completely when I get out of bed first thing in the morning. This is normally my worst moment of the day, and the rest of the day symptoms still happen, but maybe my vision stays mostly intact or sometimes I stand up and feel nothing. But a few days prior to my period, my symptoms "flare" and I get the same level of dizziness and no vision every single time I stand up. 

I also get that feeling of walking on a slant. I also get moments of feeling like the world suddenly dropped a couple inches, moments where I'm lying in bed and I feel like the bed is slowly rocking, and strange electric-like shocks/rushes to my brain that I have never been able to adequately describe to anyone. 

Personally, I have a huge aversion to doctors and the ER, and the only two times I've ever gone into an ER were once for a broken bone and once when I collapsed on the floor unable to breathe and a roommate called an ambulance. Neither of those incidents were related to my dysautonomia. I've had symptoms as severe as temporary paralysis of my legs or stomach pain so bad that I could only crawl to my bed, and I still did not go in. Obviously, I do not advise others to do the same, but your level of tolerance is going to be a personal decision. When in doubt, seeking medical care is the safer option. But many people I talk to say that the more experienced they become with their own condition, the less frequently they deem scary symptoms to be serious. I guess it's about being in tune with your own body, and trusting that you'll know when something is truly, seriously wrong. 

[dizzyape]

Thank you Vepa. I love how you said, "the more experienced they become with their own condition, the less frequently they deem scary symptoms to be serious. "  There are so many crazy symptoms that go along with this.  I will get a sudden onset of a scary symptom and tell my husband and while he tries to be sympathetic half the time I think he thinks it's in my head.  He is an ER nurse and even to him the plethora of symptoms I get is insane.  I wish there was a support group I could go to where people will understand when saying you feel like you are walking on a slant, or you get a buzzing in your head followed my a rush over your body, etc. etc.....Nice to know I'm not alone.