Baroreflex Failure / Baroreceptor Failure

I went to The Home Depot Store, I remember it started in 1993 and a sudden out of the blue I feel a instant all over flash sensation with fainting spells, and severe nausea. I left the store, and had to sit on the street sidewalk and vomit. I went home and had a BP 210/117/86

I have this episode now for 25 years out of the blue My BP is still not controlled. I have a lot of flushing in my face, neck arms and even feet and lower legs with severe sweating thruh this episode. I look so sick that I look awful. Both of my eyes are completely blood shot, glassy, and sunken in. I am constantly so nauseated with often vomit. Some days are more severe than others. Its like a sudden chemical release that’s released at one time, all over. I was several times admitted to the ER over this episode. Many times I was unable to work with this condition. I am retired now. I noticed it triggers more with severe temperatures change, I literally can not tolerate heat or cold, as my body temperature seems so deregulated. I am constituently trying to cool off or warm up also wind or stormy weather brings this episode on, special with high barometric pressure changes, my BP spikes up, also it is many times so low 75/50/58 and I get so dizzy. Lately I wake up not feeling well, with a severe Sinus like Headache, nausea and BP 195/110/56. I take a Clonidine HCL 0.1 mg, will quickly bring down my BP when it spikes up, it concern me, why in my sleep. I have struggled so hard with this condition , for 25 years, that it has traumatizing to me, to the point that it’s hard to discuss it. To this day my BP is still not controlled, and I’m having a difficult time finding a doctor that will believe me when I tell them my symptoms. None of them have helped me, and most have never heard of this condition. It is so tiring to continue to live this way. My last visit to the Immediate Care with chest pain and BP 195/108/58 they did some test, and told me the test shows lack of oxygen in the brain.

My most symptoms are: during this episode

Severe sinus like Headache, all over flash, and sensation, wake up in my sleep with high BP, early mornings and thru the day, severe nausea, often with vomit, fainting spells, and dizziness. For some reason my symptoms escalated to the point of being out of control, with dangerously high BP and my BP would drop so low that I could walk across a room at times.

Spikes in BP, excessive sweating, low or high heart rate when I rest, chest pain, difficult breathing, I feel sooo sick. I am not aple to do my daily activities with people, or be with my friends or continue with my hoppy’s, also it effected my failed marriage.

Somebody ask me if I was ever tested for BAROREFLEX FAILURE, most of my doctor's think it is in my head, and I am a nut.  I live in California, please, please can anyone give me some information,to get help in California. Thank you for your help. Now it is more when I fall asleep or am woken suddenly.

Can I ask if anyone with Baroreflex Failure has flown?  If so, how did your blood pressure react/behave during the flight/s? Did you experience any bp surges?  How did you control them?

Thanks for any replies

I have Baro failure due to removal of bilateral carotid body tumors. Currently take Clonidine, Nadolol, Salt and Escitalopram daily. I take Midodrine or Nitro-Bid to control extreme highs or lows of BP. Stress and Anxiety are the drivers that cause extreme episodes. Episode can start due to disagreement, worries, argument, embarrassment, stress. Meds give me a wide variety and multitude of side effects in everyday living (chronic fatigue, low BP, muscle ache, to name a few). Management is very difficult if not impossible. You have to control external influences as best you can, medicate and react.

i have the really low or really high bp with my dysautonomia i no idea also what doc to help this i no eletroltyes do help and added salt ...not when high tho i drink loooooot water i sorry aint much help just thought i send bit of sypathy your way

that sounds just unbearable so sorry u have to go though this wish there was somthing to help :,0(

Any doctor can lead you onto the right path and make good recommendations if they cannot deal with the issue themselves.

Hello fellow Baroreflex Failure sufferers

I haven't been on this website for quite some time due to a combination of various factors.

I am wondering how everyone is faring ?

I am still feeling extremely isolated as I still do not know a single soul with this condition, and would like to be in contact with people who are going through similar.

Can I ask if anyone has developed other symptoms alongside the Baroreflex Failure? What sort of symptoms does anyone have from the Autonomic Nervous System disorders? I had 2 blood clots last year, causes unknown. Additionally I also have major problems with both hips, knees and my back but replacement surgery may be problematic. Thyroid remains q a major problem too.

Looking forward to replies, if anyone has time.

All the very best to you all

Hello everyone

I have read all through this post and have joined to be able to talk. Hopefully people might be around still. I have had work ups for all the possible alternatives and we are left with mast cell activation syndrome or Baroreflex Failure. I am currently on treatment for MCAS. There are some improvements but nothing major and nothing at all helping BP.

I get extreme hypertensive crises and chronically high hypertension which has worsened over time and started at the same time as the huge surges. I havent had many episodes of hypotension so far, but did have masses of issues when on a beta blocker when eating a low carb diet too, which was random. My blood pressure would also surge every time they increased a dose of it.

I am sensitive to loads of meds. Alpha blockers gave me horrrrrendous tachycardia. My BP would drop a lot for a day eadh time the dose went up then shoot back up and not come down again. Without any meds my bp is wild and volatile and my hr always high and sometimes higher than others. I get horrendous headaches, sweating and flushing. Have had pheo and other NETs ruled out. Triggers are exertion, stress, some foods - tyramine and dairy as well as high carbs, heat, not sleeping enough, dehydration, sometimes hunger. Cant think of any more off the top of my head.

I don't have any head or neck injury or surgery and from scans, no tumours that would cause BF. I am diagnosed with wartenbergs migratory sensory neuropathy though, and I am wondering if that counts as afferent sensory neuropathy, which is listed as a potential cause of baroreflex failure in a paper called the four faces of baroreflex failure. There is also a possibility of pseudopheochromocytoma, though that doesnt really make much sense because thats usually in people who have repressed trauma where as I am fully aware of any mental health stuff and it is not repressed so doesn't fit. I have asked for a referral to professor lobo as my Tilt Table Test didnt show that I had POTs like we'd been assuming for the past two years. I have also emailed the neurologist that diagnosed the nerve condition since I found out about the afferent sensory neuropathy thing.

Some of the random symptoms I get, which I mention incase anyone recognises, are tingling lips and tongue, flickering vision and visual disturbances like black blobs, flashing ligts, zig zags of colour or just random eye stuff, chest tightness, weird palpitations, flutters or sometims heat just stops for a beat or two then explodes back to life, one time it felt like there was a bird trapped in my heart, breathlessness/air hunger, pins and needles, horrrrrible restless legs syndrome (was my first neurologic symptom I can trace back), digestive changes like diarhea or constipation , dizziness, nausea, migraines, occiptal neuralgia/coat hanger pain, flushing, sweating, braing fog, confusion, memory issues, mood changes/irritability/emotion, fatigue, sharp stabbing nerve pains randomly - could be anywhere on body, patches of numbness, very hot feet at times but usually cold hands and feet... thats enough for now lol