Rainy

Thank you for your response. I went to the urgent care but they told me I needed to follow up with the neurologist which I am doing today. I have had multiple EEGs for symptoms that were thought to perhaps be partial seizures but none have been detected yet. I also have a Chiari and ventral brainstem compression so what you said makes sense.

This is a new symptom for me and worrisome since it’s a holiday weekend and I can’t reach my doctor. For a few days I’ve been having this symptom where it feels like everything “stops” for a second or two and then “restarts.” It’s more than my heart. It’s more like there’s a low grade hum that represents my life support systems and it goes offline for a second. It’s a physical sensation similar to airplane travel when the pilot lets off the accelerator. You feel a physical change. This symptom seems to center around my diaphragm or sternum, which is why I mentioned my heart (no pain or pressure but more like a pulse) but it’s like all over (like body goes calm, still, quiet for just a second). These pulses of stopping calm repeat every few seconds and the episodes are lasting for hours at a time. I was definitely overtaxing myself for weeks on end before this started. I’m going to get an ekg at an urgent care center but I know they don’t understand dysautonomia so I want to ask if anyone here has experienced what I’m talking about?

Katybug, do you know if your N-methylhistamine and prostaglandins fluctuate greatly in accordance with exposure to triggering substances? My immunologist did say that we can restest me in a month. I will be sure to expose myself to known triggers next time I'm tested. Thank you again for the information.

Thank you for this info. I'll share it with my doctors. So do you use a daily regimen of histamine blockers and if so, is it monitored by your doctor or did you just institute it based on the literature and your responses to the treatment?

I'm getting bizarre "allergic type" reactions to some foods and chemicals but tested negative for allergies as well as N-methyl-histamine and D2 prostaglandin. What happens is that within minutes of consuming something that triggers the response (substances seem to vary), the roof of my mouth, soft palate and the glands under my jaw on both sides of my throat feel like they're swelling and contracting, my throat feels constricted as if my airway will become closed off (but it doesn't really), my nasal sinuses will pinch closed shutting off the airway and then release a few times (kind of like a spasm), sometimes my stomach bloats with gas and sometimes I get burning or itching skin. The most bizarre symptom though is that the insides of my ears feel like they are swelling, being pulled down, stretched and a little clogged. Maybe it's kind of like I get oromandibular dystonia along with clogging ears and allergic type response? This has also happened when I tried to use a natural oil perfume. I thought I was having anaphylaxis because my heart rate went down to the 30s, skipping beats for a couple minutes and I thought I would lose consciousness. The entire episodes last from 10-30 minutes. Sometimes I take childrens Benadryl and it helps. However, the test results did not point to MCAS (I didn't get triggered while collecting the 24hr urine though). Any thoughts on what these very scary symptoms could be? I've also tested negative for celiac disease.

Hi Percy, i started the beta blocker at a very low dose (Metropolol ER 12.5mg morning and evening) and I don't think it's lowered my blood pressure or heart rate, but it does seem to help my adrenaline over-response and deep sleep. You might want to read the book The Dysautonomia Project. I found it very helpful and it explains the adrenaline response. Hugs to you!

Hi, thanks for your response. I just recently saw another doctor that specializes in dysautonomia. He told me that these symptoms are a parasympathetic response to the overactive sympathetic response. He thinks I produce too much compensatory adrenaline because I'm so fatigued but since I don't sleep well it has been a vicious cycle perpetuating and exacerbating the dysfunction for a very long time, getting me more and more run down. He also just prescribed a beta blocker which I will start tonight. I also have RA, anemia, and reactivated Epstein-Barr which don't help.

Thanks for your response, Katybug! I've had the neck vessel constriction feeling too. I've often said that I feel like my neck is filled with cotton. There's a sense of swelling/stuffiness that can't be seen. My cardiologist did mention the possibility of trying me on mestinon, depending on the outcome of my additional neurological testing. Interesting that you mention feeling like you've been given general anesthesia. That sounds very much like what I mean about feeling half-conscious/drifting into a coma. One neurologist suggested that I have narcolepsy and cataplexy, and wanted to prescribe Provigil for daytime and a TCA for nighttime. I have so much severe anxiety and I can't even tolerate the caffeine in half a cup of green tea without having hours long severe panic, so I'm too scared to attempt the Provigil. I'm also unwilling to use a TCA because I don't want to make my sexual dysfunction any worse than it already is. I'm hoping to get another sleep study that focuses on brain waves instead of obstructive apnea (which was negative). I'm just so scared until I get some concrete answers about what is happening to me and (hopefully) why.

I'm new and this is just my second post. I'm still waiting on some test results and discussion of them with my doctors. I get an EMG Tuesday. I wanted to ask if anyone else has had this symptom: For the past few days, I have tremendous head and chest pressure (not pain), extreme fatigue (seriously feel like I'm going to lose consciousness or drift into a coma at times), and shortness of breath. It's pretty frightening because I feel there is something very wrong but I cannot figure out what it is. All these symptoms get far worse when I'm upright. My blood pressure and heart rate, however, are pretty normal. Actually, my heart rate is low (50s-60s) and my heart skips beats after eating. I'm wondering if the bradycardia is because I am so fatigued. I feel like I have the flu but no fever or cold symptoms - just run down, body aches and stiffness. The symptoms have a pretty much kept me in bed ridden except for getting something to eat and going to the bathroom. I went to an urgent care facility a few days ago and my CBC and electrolytes were normal, except for being slightly anemic which I always am.

Thanks Kris. It's helpful to know that test results can be inconsistent. I wish someone would do my upright NE and dopamine. An integrative MD did a Pharmasan Neuroscreen test on me that showed elevated dopamine in my urine (normal NE). I've also had 24-hr urine catecholamines that were within normal range, but I've never had upright serum levels checked.

Thank you for your responses, Corina and Kaitlyn. It's good to know that it's common for symptoms to vary and wax and wane. I had stopped taking all the medicines on the list for the amounts of time I was supposed to stop taking them before I had the autonomic testing done, so they should not have interfered with the results. My QSART response at the foot was "borderline" but I've been diagnosed with heat exhaustion on three occasions so I know my body isn't regulating temperature correctly either. Hopefully my skin biopsy results will provide more answers. I also just received the results of an EBV PQR test and it's positive for EBV DNA. I just read that virus can cause sensory and autonomic neuropathy as well. I'm waiting to follow up with my doctors about it.

Hi All, I want to introduce myself and share some of my story. It's rather lengthy. I became debilitated with a cascade of symptoms following a bicycle riding accident in spring 2015 that broke my elbow and required surgery and a metal implant. My symptoms have included chronic pain (spine, bones, nerves), body and face vibrations, other parasthesias, gastrointestinal issues (reactive hypoglycemia, constipation, motility issues - too fast, too slow, reflux, abdominal pains, what I think is splenic fixture syndrome), postprandial hypotension, orthostatic intolerance (feeling like I have hypoxia; the world looks like it's been smeared with vaseline, my perception is all out of whack, my coordination is off, I'm shaky and weak, and feel like a fish out of water choking and gasping for air), sudden onset weather extreme and barometric intolerance (makes all symptoms worse to point of being bedridden at times), severe heat exhaustion, severe exertion intolerance, inability to go from buoyancy of pool to supporting own body weight without near collapse and physical anxiety sensations, episodes of vertigo/rocky boat sensation, vasovagal responses with near syncope, recurrent sinusitis, head pressure, tinnitus, lower leg pain, chemical hypersensitivity/intolerance, sleep disturbance, severe problems with sleep to wake transition, severe brain fog/derealization (feeling half comatose), and on and on... I was finally diagnosed with POTS/dysautonomia in February, by a primary care doctor, after a series of vitals that included supine (pulse 74) and standing (pulse 94), and remaining standing for several minutes (pulse 111). My blood pressure did not fluctuate much during this test, although it fluctuates significantly when I test it myself as noted below. I wore a cardiac monitor for over a week that showed my heart rate going up to 158 upon rising in the mornings and going down to 48 while sleeping. I have a blood pressure cuff at home that shows my orthostatic blood pressure to vary from 77/52 (just after a meal) to 85/55 (just before graying out) to 92/55 (a typical morning) to 110/65 (mid-day) to 138/90 (in the midst of a panic attack). I have documented these autonomic changes, and have noticed that I no longer sweat, although we've had days over 100 degrees F where I live. I have been in the emergency room a few times and diagnosed with heat exhaustion (I drink 64-80 oz of water per day, and often mix it with half G2 or add 1/2 tsp of salt per 32 oz). What concerns me is that I just had autonomic testing with NORMAL results. Heart rate response to deep breathing and valsalva maneuver, as well as tilt table test were normal. The report I received states that "there is no evidence of orthostatic hypotension or tachycardia." Furthermore, my QSART report states "there is no evidence of a postganglionic sympathetic sudomotor abnormality like that seen in autonomic/small fiber neuropathy." Multiple symptoms occur for me every day, but they vary. For example, if I avoid exertion, avoid prolonged standing or sitting, the weather is fair and steady, and I eat tiny meals, I might have a fairly good day of low-normal blood pressure, no heart racing, and no sense of collapse (although I will have other symptoms). Has anyone else had NORMAL test results and still been diagnosed with some form of dysautonomia? I'm wondering if I have something more like CFS with some dysautonomia features. I'm still waiting on a few labs and the results of my skin biopsy. Thank you.