Jimbo

We are all frustrated by the lack of results in our own journeys. And what works for one, may not be applicable to another as we all know. Dysautonomia is like saying nausea. It is a descriptor of a physical ailment with 100’s of causes. if you find a solution for yours, however obscure... you should absolutely (and please) share the success! If only applicable to 2% of the audience, that doesnt make it any less meaningful to those people if they find a solution for them. And, yes, also to everyone, Always validate. Never assume somebody is giving you anything relevant to you (or even honorable intentions since sales people and gimmicks do stalk chat rooms). thank you for sharing. And God Bless you and your daughter. I pray that her suffering with this disease is permanently resolved.

It is Dr. Wilson in fact, yes. Have you seen him? Right now we are still doing rounds of ruleouts for cancer, strokes, bloodwork, etc (some of that for the 3rd time). Apparently my reaction to tilt table (triggering me into a permanent flare up of some kind) is abnormal. So we are ruling out again to make sure? I am starting to feel hopeless that i will get a diagnosis or remedy. It has been almost a year now. And i am worse instead of better. And no closer to any answers except now i have a failed tilt table and a miserable existence. Not even any treatment offerred yet aside from my stockings. whatever name they give to this disease, i really pray there is hope for relief. And though i totally agree i want to find meaningful cure/treatment, right now i would take relief in any form i can get it. 😕

@dizzytizzy i goto the cleveland clinic neurologisf on july 18. Hoping there are answers or explanations and then treatments to follow! But it also sounds like many never find that so bracing for that possibility too. You are in cle?

@KiminOrlando i take your point under advisement. I am not sure the practicality of routine trips to ER for IV. Of course i say this in gest, as i know the severity and frequency of symptoms for each individual will drive us to do whatever it takes. If that becomes necessary i am not opposed but I will try all other available methods keeping that as a last resort. And I pray for mercy for those who cannot find relief and are in that scenario. No judgments!

Licorice root, compression (waist high), ibuprofen. Got it. Taking notes dillogently. Thank you!!!

Oh boy... so it appears i am in a triggered state that is keeping me horizontal or reclined every day. Does this mean an IV might be needed every day? Or once you get a treatment the cycle is broken? do you know if the IV simply increases volume and addresses the BP for the day while the fluids last? Or is it more than thant, more treating a root cause that helps heal and move on from the episode? sorry to ask so much, i am in a fact finding stage while in pain and suffering so i am a but overwhelming when i find someone with answers of any kind.

Thank you for the idea! Do i need a script for that though? How or where do i get iv fluids before my diagnosis and scripts?

Ok, so i dont know what i have. But it appears neurally mediated hypotension will be a part of it (BP drops drastically to syncopal event on tilt table after 30 minutes, but heart rate stays steady). I have a whole list of associated neurological symptoms, not just BP related. The list includes: dizziness, cognitive dysfunctions like short memory loss and severe attention deficits, shortness of breath, chest tension, eyeballs get a stabbing pain from behind/inside, skin burns and stab sensations in extremities, and after test my soine tingles for weeks as if nails on a chalkboard and also tingling body as if my whole body is a funny bone in the elbow that got banged, insomnia and sleep pattern disruption, pain in neck and back of head and side of head, tinnitus (ears ringing), and painful clusters of acne/sores behin by ears. I have found upright sitting or standing are triggers. Also i have found exercise plays a role whereby i need to do cardio to feel better but very small doses or it is a trigger. And simce the tilt table agitated me, i can no longer do any exercise whatsoever without it triggering a whole day of tightness in chest and insomnia and etc. also time in humidity or heat will trigger me pretty fast. Unfortunately once triggered, i do not rebound but rather will have a full day and night of symptoms. I have increased fluids and salt intake. Avoiding standing and sitting upright for long periods and avoiding heat and exercise for time being. 1. Any clue which type of dysautonomia this fits? 2. Any relief i can find before Cleveland clinic neurologist appt where i might get scripts and actual diagnosis? any regional expert neurologists for this not at the cleveland clinic i should be pursuing??? thank you for any knowledge sharing!!

Wow, coincidence! I just joined because i am in same situation as your fiance. I have struggled this past year with many symptoms. I do not have POTS but rather some kind of neurally mediated hypotension and I am awaiting my appointment at the Cleveland Clinic to find out more specific diagnosis and treatment options. i was borderling negative on the 10 minute tilt table last year. So i pressed on seeking other diagnoses (for my migraines, neck pain, stabbing prickly skin in extremities, stabbing eye pains, dizziness and confusion, sensitivity to heat and standing and exercise, etc etc etc). So then the cardiologist redid tilt table last month (45 minutes vertical) and it triggered big time. My neeves and symtpoms have been activated and worsened ever since. My heart rate does not elevate as it does with pots but my BP does drop. I have autoimmune already and a family history loaded with everything from MS to AS and psoriasis, you name it it int the auroimmune realm. I am wondering if it will be the case for me but loving in extreme discomfort while i wait for the specialist. I wonder who are you going to see? Cardio or Neuro? Are you in the main campus with the Syncope Center or Center for Autonomic Dysfunction docs? I am told that is the place we need to be seen. The struggle is real! I wonder how close we are in cleveland! I was thinking this town may be due for a local chapter of a support group and information sharing!