Debbie Rose

Same here Big Trouble..I eat just a bit too much and I tach with a pounding for about 30 min's...I usually eat 4 smallish meals and I am fine...Also eating too close to bed has me taching in bed. Not nice...I have not yet been tested for GI motility-difficult to find docs who know about dysautonomiaDebbie

Hi RJE, I know for myself that a trigger of any kind can affect many areas fo my health. I just tonight was looking into the Diabetic Autonomic Neuropathy because I have had hypoglycemia for years and then was told I had metabolic syndrome (popular diagnosis for a while) and now "pre" diabetic. So are you diabetic? what symptoms are you experiencing? If I get emotionally upset I have more severe fatigue and heavier brain fog with my physical symptoms more easily triggered too along with anxiety. Eating a heavy meal will bring on tachycardia for an hour for me too-so odd! Hope this helps Debbie

Hello all, I have an appointment with the doctor of the Social Security Disability people and I was wondering if anyone has been through this part of the SSDI process and might have any advise or wisdom to provide for me? I tend to get really nervous with new doctors so I think my symptoms will be fairly evident but you never know exactly what they are looking for. Just hoped I could get some insight Thanks Debbie

So true Faye ! And the tired feeling the next day is so unpredictable too..one overdone day exhausts me the next day and then the next time that exact same activity does not cause it. It makes it so difficult to plan things. Nowadays, I expect a bad next day and if it doesn't happen then I can be happily surprised. Rest when you can and hope for the best Debbie

I am on florinef and at first was on 0.1mg and yes I saw tiny improvement with in the first few days. But by the end of 6 weeks it seemed to loose potency half way thru the day and not be as efective. I called the EP cardiologist and got increase to 0.15 which did help. But my docs are reluctant to prescribe more than once a day. I had to stop the florinef for my Tilt Table Test and was off it 2 days before the test and OMGoodness!!! I was in big trouble! I could not walk far before my symptoms would get really bad and take forever to resolve and my headaches were worse too.For me the florinef decreased my daily headaches by alot and I have had fewer migraines too. Not its been 12 days since I have been back on it but it is not working very well yet. I am not a very patient person so it bothers me. Just finished bringing grocery bags in-took and hour and 10 min. just bringing them in...LOL...not unpacked But no bad side effects that I have seen-thankfully Hope this helps Debbie

GREAT QUESTION !!! Before my dysautonomia I was quite a chilled person. Urgent situations did not cause a stressful response-ie: I was a cardiac nurse for years and ran codes when peoples hearts stopped and I simply helped solve the problem that caused it and bring the patient back when we could. The worse response to those adrenaline rushes was a headache an hour after it-nothing more. Now anything and everything "can" set my symptoms off-but not always. So frustrating when I think I am fine in a situation and "BAM!" my heart races and I get Short of breath and dizzy, shaky...you can never predict when it will or will not happen It is definitely hard to explain to others sometimes. I also experience fatigue after an episode that is more severe than my usual fatigue. And when I manage a situation and don't have an episode I still have that fatigue for several hours Hope this hopes Debbie

So I went to my eye doctor and he said my optic nerves were fine as was my glaucoma pressures (common cause of optic nerve changes). He did note that I have small optic nerves and that may have been the issue. But thanks for all your imputs- I needed to hear that others get fuzzy vision too Debbie

Wow Ronnie, Does this combo help you?? I am only on Florinef but want more aggressive medication options but my doctor is just starting the practice and is starting off gently. Meanwhile I can't work because my symptoms change from day to day and on really bad days the florinef doesn't cover the symptoms at all. Debbie

Dear Dizzy and States, Thanks for your imput, I will be seing my eye doctor tomorrow and then a neuro ophthalmologist on the 21st I have only fuzzy and rarely double vision so far Thanks again Debbie

For years when I am tired my vision gets fuzzy and I have always thought it is fatigue related Has anyone else experienced visual changes? I had an MRI done a week ago because my headaches were every day. And I had had an MRI 6 years ago that showed abnormalities. This MRI showed the same abnormality but also noted bilateral optic nerve atrophy!! I am freaking out (for a little while) and now need to see what a neuro opthamologist has to say (I saw one 4 years ago when they thought I had MS) I will go back to the one I saw then since she will have info to compare with Still upset and I know all I can do is find out the cause-hope its a stoppable cause, and go from there.

I wake up with headache every morning. I was recently taken off florinef and BAM!! headaches severe each morning. Can't wait till florinef is back at full strength. I have had nagging headaches for the past 15 years and I tend to ignore them most days. When it gets slowly worse-going towards migraine I then treat it. With the florinef at full strength my headache is duller and migraines rarer

So I finally saw the Autonomic person in the Syncope Clinic at Duke, but not a doctor-a P.A,-which I know the good ones are great. And she ordered the TTT and told me it was either POTS or NCS. But she would not fill out the disability form or become my primary source of care-that my PCP has to continue to submit it all and be my primary care person-and she does not appreciate it much. Along with that my STD ends soon and LTD has all these forms and I have to apply for SSDI at same time. My brain is wonkie to some degree most days so it will take time. The doc told me I had to drink>2liters a day, keep salt up, exercise and take my meds How can anyone work when you have to concentrate on drinking that much and visiting the bathroom a lot because of it? I had gastric bypass 12 years ago so I can't gulp water like some? I am a telephonic health coach so my conversations are 20-40 minutes long. And the stress of the new requirements of each call stressed me out so much it exacerbated the POTS to where I am now. And I need to try to go back??? Increasing salt is in progress and no big deal but with my fatigue and fibro exercise makes me worse the next day The florinef has been working but wears off after 4 to 5 hours and she was surprised by that. So how long does florinef last for you? I read a lot (some) people are on it several times a day. My son gets married in less than 2 weeks up in Baltimore,MD (I am in NC) so travel and nerves are going to be involved-how bad has it gotten for some of you under similar situations? At this point I am stressed, and scared and worried that by December I will be living under a bridge. I am the sole supporter and my sister lives with me and has her own "issues" so depends on me-there is no one who will help (crappy dysfunctional family) Guess I could live in my car. Everything takes forever!! This seems so futile and hopeless right now Deb

This week I saw my rheumatologist as well as my First visit with the Syncope Clinic that now has one doctor, a PA and a NPC for Dysautonomia (I am in Durham, NC) The Rheumatologist agreed to a salivary gland biopsy to rule out Sjogren's-to get that off the suspicions, which is this Tuesday. The syncope clinic was very busy and I was seen by the P.A. Jennifer Lewis for this first eval. My HR went up with lying, sitting, standing BP/HR check. The fluronef if definitely helping me maintain good BP. I provided her with my history and could review the 21 day halter monitor which showed all kinds of rapid episodes from PAC (rather benign) PVC's (OK if limited to 4-8) and runs of SVT, 25 of them in 21 days. She also mentioned I had First degree AV block which was new to me. She said I definitely have Dysautonomia but now we need to determine POTS versus Neurogenic Cardiovascular Syndrome-had to look that up. Unfortunately they have so many people wanting to be seen by them that the next follow up appt is in 3 months!!!! However they are scheduling me for TTT before then My short tern disability ends soon (end of Nov) and LTD is arguing my conditions-but just another wall I have to climb to get over it. I really want to work but now I have vertigo to add to everything else and the stress of the job causes my POTS to exacerbate big time. Taking it one step at a time Debbie

On Sunday I had a bad stomach flu with nausea and diarrhea so I became dehydrated. The next morning when I rolled into sitting position it was like someone pushed me- spun me right out of bed to the left and luckily there was a chair there. The world was spinning from left to right and I had to lean to the left so I wouldn't spin onto the floor. Bending over made it extreme-have bad back that got tweaked so I bent over to grab my ankles and push out and curl my back which works. When I sat up the spinning was so bad I had to hang onto the left arm rail to prevent me from being flung to the floor I have been forcing fluids all week but with my gastric bypass I am not able to drink quite as much as I should. It is less often but I still spin if I get up too fast or bend over too quickly without a slow rise to standing. Worse still is the spinning I get while in bed. I tend to toss and turn and when I do the vertigo wakes me with the spinning Has anyone experienced this? Or had an evaluation for it? Thanks Debbie

Sarah, Dr. Klein has been on medical leave since before 5/2011 There is a new MD out of Duke I will be seeing in Durham on Oct 30th and will share that info afterwards Debbie

Sounds great KS, glad things are back to normal-lab wize-LOL Debbie

That is so great!! From one who has had daily headaches and migraines a few times a month I can imagine he is a totally different person ! Fluronif seems to minimizing my headaches and some days have had NO H/A which is amazing So great to hear he is doing so well. Will keep him in my thoughts Debbie

Do as far as Autonomic disorders-there are 7 codes "specific" with over a dozen different conditions in most of them. So at least we have more detailed diagnosis' we can have used for our conditions and since insurance now identifies them, I am hoping my LOA/Disability Dept recognizes them too-here's hoping Debbie

Spent the past hour looking through ICD codes and Shy-Draggers is in there and so is Erler-Danlos (?spelling?) in there. Along with POTS, so that is so nice! LOL and a lot of funny diagnosis-Bitten by cow, pecked by turkey, "collision" with whale, dolphin (marine animals) killer whale! Get this one-pedestrian collision with roller skater; or collision with air balloon with injury (LOL) There are 20 weird ones like that...so funny! Just wanted to update you Debboe

My understanding is that as of October 1st all doctors in the US will be required to use the new codes. I would be curious to know what other conditions have clearer coding as well. I will try to find out Debbie

So KS, How did things go with your new labs? My Anion Gap and Chloride was off by a smidge but my PCP said it was nothing to worry about. I have been hypoglycemic most of my life and now am borderline (PRE) diabetic before these POTS symptoms showed up. And still get hypoglycemic easily. And now that I am on Florinef and latuda I have to be aware of my glucose, potassium, BP, weight and cholesterol=oh joy! I have a glucometer to check my glucose and though I have gained weight, everything was normal on Sept 16th Just wanted an update to see what they found. Hope it went well. Debbie

Hi, Sara how did the tests go? If I am not mistake that med is commonly used for depression and pain, but there is research that finds it helpful with the lower chemicals in our bodies-serotonin, nor-epinephrine and the like . These SSRI's take up to 6 weeks to fully get back into your system from my experience-I am on paxil, welbutrin (and trazadone) and at one time Cymbalta so it can take a while for full effects but for most people (and me) I noticed some benefits the first week. It was good you came off slowly-best ways to do it, hope your doctors came up with a game plan for you. Hope this was helpful Debbie

Great Suggestions all !! I have had debilitating fatigue and fog since 1995 if I overdo. My fatigue is there every day and my depression came before the fibromyalgia.I have learned to do things in tiny increments of 10-15 minutes on good days and resting an hour in between these; and reassessing how I feel. On bad days it a Comedy DVD and hunkering down with warm soup and plenty of fluids. Over the past tens years as things changed with new symptoms coming and going, my only goal was to continue to work...a necessity financially but also because as a health coach I was able to talk to people who wanted and needed guidance-hearing them get excited about new information, encouraging those who are going in the right directions or just supporting them emotionally was very rewarding and since May with all that has gotten worse with the anxiety and stress I am not able to do it right now. I miss it Over the years I have set up things to enjoy-like bird feeders and identifying all the birds. Hummingbird feeders and caring for my animals. Acceptance is hard sometimes but just staying in the moment and dealing with today helps. Tomorrow there will be differences and maybe a new med or test to help us out. a 12 step program had a saying-something like "Don't give up until the miracle happens" that somehow makes sense to me Debbie

Wow! What a roller-coaster ride!! So sorry you are feeling so badly. I have only had dips with standing with BP and faster heart rate. Now that my doctor increased my florinef these experiences are less severe as well, for now. I am still waiting for a diagnosis so I don't know much except how my body responds to different things. I had a hard time convincing people I was reacting to a "rapid heart rate" of 90-110 because they never get alarmed by that number. But for me with a resting HR of 45-55 that is a high rate "for me" So I understand how a higher rate than you are used to in BP can make you feel off. Has your doctor allowed you to adjust your midodrine?? I have always been told never to change doses of medicines without my doctors directions and awareness, and never to stop any of my meds without getting my doctors involved. Bad reactions can happen sometimes. I hope your doctors can help you this week to stabilize, this is such a wonky weird bunch of conditions Keep us updated and my thoughts and prayers go out to you Debbie

Hi Kelly, I know!! It was so wonderful when the Neurophysiologist and the Duke EP Cardiologist stated it sounds like POTS...Finally !! I am not crazy!! As my health declined I changed positions a lot. In hospital from Cardiac Telemetry to floating Admitting Nurse (initial admissions paper work and assessments-a lot of sitting) Then to night supervisor at Genesis Healthcare and briefly as a dialysis nurse. My present job is a work from home Telecommunication Case Manager with a national insurance company. I worked for a similar company-same function but condition care at a telephonic office setting -they moved out of state so I found the other job-took several interviews but it was worth it. At first the job was great and I was really good at helping my members. But suddenly last November the company chose to add being a Case Manager to the job requirements and all of a sudden there was so much more to learn with rules and certain questions to ask on each call. And suddenly the stress of it, along with the care of my Mom with her progressing dementia, and my sister (with some mental issues herself) needed to move back in-all that stress just sent me over the edge with severity of symptoms. I am hoping some meds could help me to get back to work at least part time. My Mom is now in a facility and my sister is doing well. But my symptoms change each day right now-no way to gauge my ability to work. Yet I am the only one taking care of me...I would loose a lot if I couldn't work Sorry but I really needed to get that out there. I try to just take things a day at a time right now Thanks for listening Debbie