Victoria

Thanks songcanary. I'm glad your good friend does so well with the meds, hearing that encourages me. We haven't been so lucky. Both guys have had to change meds and dosages frequently to keep afloat. I keep hoping the doc will find the perfect dose of the perfect drug.

I'm positive you freaked them out, lol! Family/friends used to take me to the ER and I'd be in pain, very emotional, crying and confused. I get exactly what you're saying! By the time ED staff got to me my vitals would be nearly normal to normal from lying down in the car and at the ER. I don't do ERs anymore, I've since learned to self treat at home.

My husband and son are both being treated for narcolepsy. The sleep study doc said our son inherited it from his dad because there is a familial component to N. Hubby complained of dizzy spells a while back, and guess what? He got a TTT. He fainted, the cardio diagnosed him with Vasovagal Neurocardiogenic Syncope, handed him a script and said these should stop the fainting. Problem is (or the good thing is), the only time he fainted was during the TTT. Our son also experiences lightheadedness, migraines, chest pain, palpitations, weakness. . . . What exactly is Vasovagal Neurocardiogenic Syncope? I know now it is a form of autonomic dysfunction, I know what each term means, but what exactly is it when the terms are combined? From what I've read it sounds like a misnomer? Can anyone define this for me? Does anyone have knowledge of Autonomic Dysfunction and Narcolepsy as a combined entity? Sorry for burning up the forums so much. I have more questions than answers and between the three of us we are a family in medical crisis.

I'm seeing this as a GIANT step in the right direction! Yay for you! Please try not to be frightened, nothing has changed except the direction your diagnosis may be headed. xoxo and blessings to you.

Did you go to St. Paul, MN? Mayo is sometimes missing a diagnosis by stopping the test if we don't meet their diagnostic criteria within 5 minutes. We aren't all cut from the same cloth and it can take longer than 5-10 minutes to see the BP and HR changes. Some of my TTT was awful as well (physically painful), and I absolutely dread doing it for a longer period of time, but I must so I can put finality to my diagnostic dilemma.

Thanks for posting this interesting link. I have to agree with Dr. Alderman: “The low-salt advocates suggest that all 300 million Americans be subjected to a low-salt diet. But if they can’t get people on a low-salt diet for a clinical trial, what are they talking about?”

Dear Lissy, I think it is wise to research and consider all causes of your symptoms. But I also want to offer a bit of caution. At the beginning of my illness I simply went with the flow and believed the doc when he told me I had a psych problem. I took whatever psychiatric medications I was told to. I even agreed to Electroconvulsive therapy, but I did end up backing out (thank goodness). What did I know? I was just a very sick young adult with no medical knowledge and the internet hadn't yet been developed. At several points in my life the psych drugs caused such severe tachycardia and hypotension that I had lengthy hospitalizations in the psych unit, but no one ever took my BP or HR. They described me being as on the verge of catatonia, not understanding that the very drugs they'd given me made it nearly impossible for me to move. My black-outs were interpreted as conversion disorder. The drugs they gave me for anxiety and depression wreaked havoc with my ANS. This was 25-28 years ago and those psych records still haunt me today. They precede me to almost every new doctor I see and often prevent me from obtaining adequate physical health care. I could go on and on about the pitfalls. . . . My advice would be to consider everything, but try not to put all of your eggs in one basket.

Chaos, were the 10 minute TT tests long enough to make a firm diagnosis? 5 minutes wasn't long enough for me to experience a big crash. I also see you have Reactive Hypoglycemia, GERD, EDS and Idiopathic Autonomic Neuropathy. Make sure someone is treating your GERD adequately. Mine began in my mid 20s, the instant I developed autonomic dysfunction and it was relentless. I later developed Barrett's Esophagus (esophageal pre-cancer) from not being treated for the GERD. I also have what my endo refers to as Glucose Intolerance with a high A1C. Take good care of yourself.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001780/

Hang in there, Jennifer. I hope and pray tomorrow is a much better day for you and that your doctor prescribes something that will give you much needed relief. From what you describe, I had the very abbreviated version of the QSART. Thank you for the explanation, I've been wondering about this. . . .

You made an extremely difficult decision, but it was obviously the right one or you wouldn't have been able to do it. Please be good to yourself, don't look backward, and be proud for knowing when to throw in the towel. I believe things happen to us for reasons we can't yet comprehend. Keep your chin up. I'm keeping you in my thoughts and prayers and sending you a great big ((((((hug)))))).

FWIW, I would also pass on the bladder sling surgery. Major and minor surgeries take me down quickly and for a long time, plus my outcome wasn't exactly stellar. I haven't explored EDS (connective tissue laxity) as the cause of my incontinence. I've been too embarrassed (more like gun shy) to discuss it with my docs since being degraded at Mayo. The Mayo neuro looked me directly in the eyes and flat out told me I couldn't possibly be experiencing incontinence in addition to all of my other symptoms, and he wouldn't allow me to discuss the problem any further. I was completely stunned and blindsided by his reaction. This neuro's clinical report of my so-called mental status has preceded me to numerous doctor appointments, so they usually have preconceived ideas about me. If Mayo can't find "it" then "it" must not exist. I feel like I've been cornered like a rat since I went there, and in a sense I have. But I also realize I'm overly sensitive about my experiences and I need to pull up my big girl panties, try to deal with it and somehow work around erroneous impressions and documentations of me. This illness is hard to nail down because so many body systems are involved that it can make you appear as if you may be mentally ill. Like I'm telling you anything new, huh? But I do feel I've taken a monumental step toward diagnosis by getting my records to Dr. Grubb. The entire weekend urinary retention happened only one time when I was in my 20s. I sometimes feel a sense of great urgency, sit down (seemingly forever) to go and nothing happens. Truly nothing, not so much as a drop. An hour or whatever later I try again and the dam breaks. I also feel much like you do with a sudden and great sense of urgency as if my bladder will either explode or I'll lose control. Laughing, sneezing, sudden fright and coughing are enormous triggers. There are other times when I don't have any sensation of having to void when I have a bladder full, so it's a mixed bag. The "D" fecal incontinence is odd. I don't ever have GI cramps, but I do have a sudden and great sense of urgency and realize I have to get to the bathroom NOW (sometimes too late). I have no idea what happens when I lose control at night. All I know is I wake up to a giant mess and wonder what the heck happened while I was asleep. I'm always exhausted yet I frequently have insomnia. Once I get to sleep nothing wakes me up except for respiratory weakness, tachycardia, or when my 4-6 hrs. of sleep are in. I'm sure the deep sleep I go into comes into play with not being aware that I'm incontinent. The big question is why? And is there more than one cause in my case? I'll be sure to give my new internist copies of my genetics workup for EDS next time I see him. Unfortunately it'll have to wait a while because hubby just changed jobs and we have to go 30 days without medical insurance. Yikes!

Julie, do you happen to know if "D" would worsen at the time of menses in someone with a mast cell disorder? I've had urinary incontinence since I was a kid and had many embarrassing accidents as a teenager/adult. I had bladder sling surgery years ago and it corrected the mild leakage problems, but did nothing for the big picture. The dam still breaks. It's like someone drops a giant water balloon — I have complete loss of a huge amount of urine and I don't sense a thing until it's over. Most people urinate in a stream, and I do sometimes, but other times it's like the urine falls out all at once in a big gush. I also have no sensation of having to urinate or defacate sometimes. Weird and humiliating depending on what company you're with at the time. I'm sorry for being so graphic. I've noticed I have astronomical voids (overfilling a collection hat every time I go), urinary incontinence, and having diarrhea and fecal incontinence after I've been on my feet too long. Norepinephrine surge? Is this in the realm of possibilities? I experience the same thing you do Julie — the exact opposite problem where I feel an extreme urge to urinate and nary a drop would come out. I once went a whole weekend without voiding. So yeah, sympathetic vs parasympathetic. What a battle. Thank you to everyone who replied. You've all encouraged/empowered me and it feels good to know I'm in good company.

Mornings are awful for me. I start to perk up a little bit in the late afternoon to evening for some reason.

Thanks Jana. I'll bring extra clothing with me when we get together!?

Thanks Sue. I've had MRIs of my spinal cord a couple of times and all is normal. The incontinence seems to happen when I'm feeling especially bad; when I'm having one of my "storms" of tachy, weakness, etc. And the amount of incontinence I have at one time isn't small. When it happens at night it doesn't wake me — I wake up in the morning to a very flooded and messy bed. Sorry for being so graphic, and poor hubby.

Yes! Mayo genetics diagnosed me with EDS, the hypermobile type. I didn't know incontinence was an issue with Ehlers-Danlos Syndrome. Thanks so much for sharing this with me.

Am I the only one who experiences urinary and fecal incontinence? I assume this is also related to the ANS? I've been dying to ask this question but I was too embarrassed until now. Please PM me if you're not comfortable discussing the subject openly.

I love the heart idea!

Julie, I went to Mayo, Rochester. They were in search of autoimmune disease and I spent 8 months there. The general neurologist I saw at the very end of my stay did not believe I was experiencing the symptoms I reported and he was quite rude to me. His remark was, "your primary internist referred you to almost every specialty clinic here, so I'm going to refer you to the autonomic lab and get you out of here." He was very rude and condescending. I didn't know how long a TTT should last, or that the test is typically continued until they catch a high HR or BP drop. Being tilted for 5 minutes obviously didn't reproduce OI. An endo in CA later tested my BP and HR without a TTT — supine and standing for 1/2 hour (that was agonizing). Results were abnormal, but he didn't know what to do with me, plus the lab lost my blood. Oh, well. I'm back to the drawing board but I'm hopeful.

I'm replying collectively again. What I'm trying to do is figure out just what tests Mayo did and didn't do while I was there. Looks like I had a "quickie" Autonomic Reflex Screen? Or is this considered a full TTT? I was supine and at a 70 degree tilt for 5 minutes. Orthostatic hypotension was not detected. Beat-to-beat blood pressure and Valsalva maneuver showed a reduced late phase II. They didn't draw catecholamines during the autonomic reflex screen. Outside of the autonomic screen, I already knew that my norepinephrine and dopamine are high sometimes. QSART responses were reduced at the foot site. I have postganglionic sudomotor and cardiovagal/cardiovascal adrenergic impairment and demyelinating & axonal neuropathy. I'm not intelligent enough to decipher what tests Mayo did or what the results mean. Thanks all.

Not trying to hijack the important Riboflavin post, but I take Mag-Tab SR tablets. This is the only slow release magnesium made and it is absorbed by the gut much better (and doesn't cause diarrhea). Your pharmacy can order it in for you if you're interested. Please keep us posted on how he does with Riboflavin if you go that route.

How long should a person be in the supine and 80 degree position during a TTT?

Ooooooo, this made me so angry I couldn't finish reading it. His statement that POTS results mostly after prolonged bed rest is nothing but a bunch of hog wash. I was a very athletic and active person, then one day . . . boom! Levine had best go back to the drawing board on this one. Grrrrrrowwwwwwwl.

My nephew has flushing, allergies, severe asthma, life threatening episodes of his throat closing shut and he also has dermatographia. My sister-in-law attributes his problems to a simple overabundance of histamines (per their family's lifelong GP). But she is firm in her belief that he has never experienced anaphylaxis. My son has similar problems and he has an upcoming dermatology appointment. I figured that was a good starting place for investigating the possibility of MCAD. My son's skin is very sensitive, he flushes constantly, and has symptoms that are similar to mine. He just missed two more days of school because he was lightheaded on standing, had chest pain and felt generally ill. I wish family members and the school wouldn't come down so hard of him when he's not feeling well. The poor kid has enough to deal with. I gently used used the blunt end of a pen to write on his skin for the pics below. The marks are always vivid less than a minute later. I won't call it dermatographia this time because his skin didn't welt, but it has many times before. I'll keep you posted on how this unfolds for us.