reaching out

[JoshMW]

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.

[Pistol]

How is your BP now? Is it still high? Have you ever considered an autonomic specialist? There are several in the US, listed on the physician finder list on this site.  

[KristaKupcake]

3 hours ago, JoshMW said:

 

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.

Have you tried using different beta blockers or just the one? Some are cardiac-specific while others are non-specific and have more widespread effects on the body. Maybe other blood pressure medicines could help? It certainly sounds like you have POTS or some other type of dysautonomia. 

3 hours ago, JoshMW said:

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’ve heard some people have used ibuprofen when they eat to reduce blood pooling in their stomach - I’m not sure if this will help you. I started with intense nausea, lack of appetite and weight loss as well. I lost 20 pounds initially. I treated for a stomach ulcer (probably stress-induced and overuse of Advil). This helped my stomach to heal. I still get morning nausea but I can eat smaller meals now. 

I don’t have the head pressure but I see my pulse all the time in my vision and I hate it! It is so distracting and dizzying at times. 

3 hours ago, JoshMW said:

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.

I’ve on the back of your neck or putting your face in a bowl of ice water helps to calm down the nervous system - so it makes sense that cold helps you feel better. It is great for calming anxiety attacks as well. Putting the face in ice water can be a bit too shocking when you have heart issues though so be cautious if you do that. 

I’m sorry you are going through all this. It really affects your life in every way and can be discouraging and defeating. Know that you are not alone and there are lots of great people here to chat with. 

[Derek1987]

8 hours ago, JoshMW said:

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.

I don't know enough about this disease as I'm just now getting treated. I take xanax for anxiety. This disease has me so worried I take Xanax for panic attacks. I already had anxiety before but wasn't taking anything for it. It took me 3 different psychiatrists to actually prescribe me a benzo. They tried celexa, Zoloft, and a few others which did absolutely nothing for my anxiety. I needed a benzo. 

[StayAtHomeMom]

5 hours ago, Derek1987 said:

I don't know enough about this disease as I'm just now getting treated. I take xanax for anxiety. This disease has me so worried I take Xanax for panic attacks. I already had anxiety before but wasn't taking anything for it. It took me 3 different psychiatrists to actually prescribe me a benzo. They tried celexa, Zoloft, and a few others which did absolutely nothing for my anxiety. I needed a benzo. 

Is it true panic attacks or just POTS? Sounds like you probably had it really rough to get a POTS diagnosis. 

[Derek1987]

9 minutes ago, StayAtHomeMom said:

Is it true panic attacks or just POTS? Sounds like you probably had it really rough to get a POTS diagnosis. 

Well I've had anxiety as long as I can remember. After I fainted the first time, it got really bad, and that's because I was scared I was going to faint again. So more like PTSD. 

 

I'm not even sure if I'm diagnosed with POTS officially. The specialist just talks about the nervous system.  I'll probably get an official diagnosis after I do all of her tests. I have a brain MRI tomorrow. She did say I don't need compression socks and she thinks my adrenaline goes nonstop. But at the same time she showed me an illustration of a person with autonomic dysfunction and how blood flow reaches the brain less and less the longer they stand up. So I'm confused. Sorry if I've repeated myself to you. I forget who I answer to. I have bad memory loss problems as well. 

 

It was a pain to get in the right direction. The hospital didn't think anything was wrong with me on my 3 ambulance rides. The neurologist said I was passing out probably due to anxiety. He was a joke. I only talked to him for like 2 minutes and he left . Finally my cardiologist sent me to a heart doctor who deals with electrical signals in the heart. He came in and was just like I think you have autonomic dysfunction so I'm going to refer you to someone who specializes in it .

 

Another problem I'm having is my insurance won't pay for a heart monitor implant because I'm under 40. I was denied twice. I'm going to see if my autonomic dysfunction specialist can do anything for me on that.

 

I've had several palpitations today. And skipped heart beats or out of rhythm. My head is killing me. I'm getting more headaches. Could be stress. But i also feel nauseated everyday. Not major but it's not normal. I just feel like a sick person. 

[Help4Me]

HI Derek I had 15 ER visits and 5 of them were by ambulance....this all just started for me 5 months ago...I remember the exact date and time..it was so traumatic......it has been a very very long 5 months for me...and I still don't know if it is POTS or PURE autonomic dysfunction and they also mentioned Auto immune.....so I don't know..I just know that every day I am fighting for my life.....it is the scariest thing I have ever been through and I have been through a tremendous lot in this life......hang in there and email me....

[StayAtHomeMom]

1 hour ago, Help4Me said:

HI Derek I had 15 ER visits and 5 of them were by ambulance....this all just started for me 5 months ago...I remember the exact date and time..it was so traumatic......it has been a very very long 5 months for me...and I still don't know if it is POTS or PURE autonomic dysfunction and they also mentioned Auto immune.....so I don't know..I just know that every day I am fighting for my life.....it is the scariest thing I have ever been through and I have been through a tremendous lot in this life......hang in there and email me....

I would say the same thing. Hang in there. It does get better. I am 3 years in and I am loads better than I was those first few months. 

[bombsh3ll]

JoshMW,

I'm sorry you're dealing with this. Have you been evaluated for a phaeochromocytoma? This is a catecholamine secreting tumour. This can be tested for with a 24 hour urine collection for catecholamines. These are treatable (most of us on here are disappointed to test negative!) but it is certainly worth checking if you haven't already. 

B x

[Terri]

Bombsh3ll - that is what I was thinking.  Josh I hope you can find someone to do testing for a phaeochromocytoma soon. Also, have you been evaluated for chiari and/or intracranial hypertension?

[JoshMW]

thanks for all the replies everyone. i was tested for phaeochromocytoma and the result was negative. ive had a lumbar puncture which only showed raised lymphocytes. they were supposed to check the opening pressure but checked it after taking a sample, so i dont know if that makes a difference.. ive had an MRI that came back normal, no vascular defects etc. i experience a lot of pain on my left side specifically; in my carotid artery, but also leg cramps and nasal congestion etc are all predominantly left side. I've had a stomach biopsy which indicated inflammation consistent with celiacs disease, but the blood test for celiacs was negative. i have eliminated gluten regardless, and i will now be eliminating all dairy except for butter (no lactose or proteins). i havent been out of the house for several months now, but i want to get tested for mast cell activation. i think histamine might be playing a role (its one of the only things i havent tested at this point). interestingly blood catecholamine levels were showing as quiet low when i took the test years ago, perhaps my adrenals were fatigued. since then my symptoms have changed and i take tyrosine to eliminate any fatigue.

does anyone here know more about histamine? i have just purchased an over the counter peripheral h1 blocker (fexofenadine) to experiment with.

edit: i should add that my blood pressure is actually on the lower side these days. when i stand motionless it tends to keep dropping, then there is a slight correction, but mostly the diastolic (i am thinking local vasocobstriction), which results in narrow pulse pressure accompanying the tachycardia. when i lay down it is 110/60. which is like a dream come true compared to the struggle i was having with high BP in the past, but my intuition tells me that the BP in my arm is not necessarily indicative of whats going on elsewhere. i have sensations in my legs, head etc that feel like blood pooling. my hands and feet turn purple and my skin is dry. rolling over in bed causes odd sensations and heart palpitations. etc.

thanks everyone

[StayAtHomeMom]

1 hour ago, JoshMW said:

thanks for all the replies everyone. i was tested for phaeochromocytoma and the result was negative. ive had a lumbar puncture which only showed raised lymphocytes. they were supposed to check the opening pressure but checked it after taking a sample, so i dont know if that makes a difference.. ive had an MRI that came back normal, no vascular defects etc. i experience a lot of pain on my left side specifically; in my carotid artery, but also leg cramps and nasal congestion etc are all predominantly left side. I've had a stomach biopsy which indicated inflammation consistent with celiacs disease, but the blood test for celiacs was negative. i have eliminated gluten regardless, and i will now be eliminating all dairy except for butter (no lactose or proteins). i havent been out of the house for several months now, but i want to get tested for mast cell activation. i think histamine might be playing a role (its one of the only things i havent tested at this point). interestingly blood catecholamine levels were showing as quiet low when i took the test years ago, perhaps my adrenals were fatigued. since then my symptoms have changed and i take tyrosine to eliminate any fatigue.

does anyone here know more about histamine? i have just purchased an over the counter peripheral h1 blocker (fexofenadine) to experiment with.

edit: i should add that my blood pressure is actually on the lower side these days. when i stand motionless it tends to keep dropping, then there is a slight correction, but mostly the diastolic (i am thinking local vasocobstriction), which results in narrow pulse pressure accompanying the tachycardia. when i lay down it is 110/60. which is like a dream come true compared to the struggle i was having with high BP in the past, but my intuition tells me that the BP in my arm is not necessarily indicative of whats going on elsewhere. i have sensations in my legs, head etc that feel like blood pooling. my hands and feet turn purple and my skin is dry. rolling over in bed causes odd sensations and heart palpitations. etc.

thanks everyone

The MRI, what was it of?

[JoshMW]

3 hours ago, StayAtHomeMom said:

The MRI, what was it of?

head/brain, I could see some of my vertebrae in the images so im guessing they ruled out charai.. I have copies of the scan on my computer. posture does play a role in how i feel, i cant just slump in the lounge otherwise i will get very odd pressure sensations. oh, i also get a runny nose when i eat.. i have so many quirks i forget.

[Pistol]

@JoshMW - I get the runny nose with eating and when I first get up. My doc told me that this is due to the sympathetic NS kicking in. 

[StayAtHomeMom]

8 hours ago, JoshMW said:

head/brain, I could see some of my vertebrae in the images so im guessing they ruled out charai.. I have copies of the scan on my computer. posture does play a role in how i feel, i cant just slump in the lounge otherwise i will get very odd pressure sensations. oh, i also get a runny nose when i eat.. i have so many quirks i forget.

Have you tried seeing a chiropractor?

[Stark]

@JoshMW @Pistol I also get a runny nose while eating and I feel like it could be MCAS. We're either of you ever tested? 

[Pistol]

@Stark - I was tested for MCAS and was negative. I was told the runny nose stems from the ANS being stimulated.