Hi, I am new to the forum. I have been trawling through online forums for years now, trying to find other people with similar symptoms, but I think I'm a bit unique.. I guess at this point I just dont want to feel alone anymore.
When I was 15 I started experiencing "head pressure" upon standing. It felt like the opposite of light headedness, maybe an overreactive baroreflex. The sensation would only last maybe 20-30 seconds, but it was very intense and scary at times. I remember dreading when I had to get out of the car in public and hide this horrible sensation that felt like my brain was going to explode. I would hold my breathe until it passed. Excercise helped. Prozac helped (doctors said anxiety). I would deal with this sensation off and on for more than 10 years.
Around age 20 I became passionate about bodybuilding, but eventually gave up because my pulse became uncomfortable in my head during excercise and my heart rate would remain elevated for hours or even days after a big workout.
Around age 27 I experienced a very stressfull time in my life, so I started excercising again. I think the combination of the stress and excercise eventually pushed me over the edge, because my heart rate and blood pressure remained "permanently" elevated for months before the doctor prescribed me beta blockers. I was averaging around 150/80 and resting HR around 90 (my normal is about 55). The beta blockers worked great at first, but gave me terrible nightmares. I would wake several times at night with my heart beating out of my chest. Almost like PTSD style nightmares. I believe I was actually withdrawing from the medication in my sleep, because I had to split my dose throughout the day to avoid a rollercoaster ride. I also became VERY sensitive to the heat in summer (and hot showers).
After about a year the beta blockers started becoming useless. The head pressure was worse than ever and my sleep was killing me. I had one particularly bad night; I could feel my pulse in my face, neck, fingertips, everywhere. I could hear the blood pulsing in my ears while laying in bed. Standing up felt dangerous. The next day I had a mental breakdown and went to the hospital, I didnt want to leave until I was fixed. I was prescribed anti depressents and began ceasing beta blockers.
BB withdrawel was h*** on earth. It was just after my sons 5th birthday. I became completely bed ridden and my father (who lived with us) started taking responsibility for him. I couldnt even sit up at my desk without my heart rate climbing upto almost 200. My systolic pressure would actually fall and my diastolic would increase to over 100, sometimes my pulse pressure was barely 20, it felt like my heart was suffocating. I spent the next year very slowly sitting at my desk for longer and longer, then standing, then walking, then jogging.. but it never went away, everything had to be done patiently and methodically; I had to use a stool in the shower, keep my house freezing cold etc.
My POTS symptoms changed. I feel OK slowly walking around on level ground now, it's only when standing still the blood feels like it's pooling in my legs (itchy), plus I get a vasodilation type pressure/pulse sensation that keeps building up in my neck and head. It makes me anxious and feels worse when I breathe out (exhale). Re-initiating movement again usually gives me an intense rush and a skipped heart beat. Obviously excercise is still very limited.
It's been almost 2 years since BB withdrawel and I am still having relapses. I have just spent the last few weeks in bed and it feels like I am now starting all over again the psychological toll feels immense. I now have more symptoms. Eating now gives me the same sensation as standing, so I lost a lot of weight in bed drinking only juices. Eating has become a 2 hour event, I eat food and then I walk around for ages (bored out of my skull) trying to help circulate my blood. Doing abdominal crunches helps too. It's getting better slowly. I can't get to sleep at night because of the strong pulse in my face when I lay down, especially the left side external carotid artery. I get episodes of explosive pressure deep in my nose, I have to use cold packs and chew on ice. I think my carotid arteries are dilating in response to the decreased flow elsewhere? My tachycardia is actually improving while these other symptoms get worse.
I take magnesium and low dose prozac. I also take tyrosine, it helps me keep up with the demand for catecholamines and prevents me from getting fatigued and stressed out (highly recommend to anyone experiencing fatigue). Beta Blockers do nothing to help anymore, I only have ice water to help when I get an attack. And thats about it.. my future seems very uncertain now.