Baroreflex Failure / Baroreceptor Failure

Hello,

I was searching for a Barorefex Support Group and came across this posting. It is good to hear from others that are struggling with the same issue. Not that I am happy to see others with this horrible condition but it was good to hear all of your stories and symptoms and some of the medications you are using to circumvent the condition. My Story is similar, in 2008 I was diagnosed with Stage 4 squamous Cell carcinoma in the throat and neck. Had Surgery, Chemo and radiation of the head and neck. Praise the Lord I have been cancer free for 15 years. My symptoms started about 8 years post radiation. Dr had me on verapamil cause I was getting headaches at the time. Seemed to help as it was on the high side at the time. A few years later thing got progressively worse and started fluctuating high/low so I ended up at a Neurologist Dr Rose Dotson. After a barrage of Autonomic testing she determined I had the BaroRefex/receptor Failure along with Dysautonomia. Symptoms were more manageable at that time. Moving forward about 2 years ago things got really bad. Huge roller coaster between highs and lows. For me 240/139 was highest and 44/30 at the lowest. I ended up retiring earlier then I wanted due to concentration issues (high) and having to lie down periodically due to BP dropping so low. I was extremely active up about 2 years ago, since I retired I have little to no desire to do much. I absolutely HATE this feeling because I have lost purpose. Now I have a new Neurologist and Cardiologist and have multiple meds., Midodrine for when low, also Salt tabs, and Nebivolo and Losartan for the highs. I have tried on my own to find the magic combination to no avail... so now I use the meds as needed and wear compression socks to keep it elevated. Now I just don't feel well all the time, heartburn issues, headaches, my temp runs low, 96-97's have pressure in chest and I feel every heart beat in my head. tinnitus constantly, head feels full most of the time. There is ZERO pattern to this, like others, it can be high one second and drop to the point of passing out in another. For me this has been debilitating and has made life non existent. I still try to volunteer at HAWS (Humane Society) and the local food pantry to keep from losing my mind. Those days are important for my metal wellness. I do NOT wish this condition on anyone. I pray that you all find something that works for you and can manage to stay on top of this. I am going to present the medication some of you are on to my Dr's and see if they think it might be worth trying. I am desperate to find something to stabilize this even just a little.

Hello

I can see there werent any replies for a while. i wonder how everyone is. this is the first place i found with this condition, i was looking for a while. i have it since childhood and the cause isn't known. i can see usually that the cause is apparent but not for everyone. i didnt know what it was and doesnt look like some of the doctors i saw come across it even rarely. i wasnt aware even what it was im so used to it and for me i guess it isnt as severe as for some. but i can see its pretty much the same because i havent been able to relate before to others that much. it depends on the level of it i guess.

i used to and still have near faints since i was 9 usually if its really hot and humid like after a bath. but that part isnt that abnormal. i was often noticed to have high blood pressure mostly diastolic since i was a child. couldnt do some activities even at 5 that required more intense exercise

even after blacking out it was more often high. ive continued to have pre syncope as a teen and adult. i dont have orthostatic tachycardia normally but if i stand for a while carrying something eg a small bag or trying to write something or think of something more complex then i do. my heart and blood pressure go up often throughout the day. so i can get it just by thinking. or having minor activity like writing or a phone conversation. for some reason i dont understand it reacts worse to talking on the phone than in person. it tends to do strange things without a pattern too. or i just dont know the trigger. doctors kept saying its anxiety. i have that too. thats the part i can control thats why they tell me that. since they also didnt mention baroreflexes and i knew that it cant be just anxiety i was confused as i didnt know that they knew. in any case they dont really know that much more to tell me , there was not much to tell. very frustrating condition.

i do have swings of blood pressure i guess the brain cant compensate that fast i become disoriented sick retch collapse get vertigo the heart rate goes with it. it can be controlled to a point which is lucky im on bisoprolol and candesartan. im not really keen on the other meds as they can make other things worse, but i guess they would give them if i had to take it.

some doctors werent even willing to work with it they said they didnt know how to, tried to send me back to past doctors.