Xhale1991

Hoping someone can help me out.

I did cardio today for the first time in a while. About 5 minutes into the run, I started to feel nauseaus, lightheaded, and very disoriented. Soon after this my fingernail beds turned dark purple like I have never seen them before. Had to stop and walk back home because of how weak I began to feel. Still feel terrible an hour later and have been breaking out in a cold sweat while my vision is weird (seeing black spots all over).

I figured my blood pressure would be very low but its perfectly normal. What could this be? It really seems like it is somehow related to my oxygen levels given how similar the symptoms are to hypoxia. I have POTS and CFS.

Sorry, wanted to explain SVT for you-it can be a dangerous rhythm if it stays up-my Mom's would go to 240-280 and my sisters to 280-300 with dizziness, near fainting, shaky all over, shortness of breath for the length of time of the rhythm.

If you ever see Emergency shows SVT lasting a "long" time can need cardiac "zap" with a defibrillator if meds don't work (but they usually do-better meds these days)

Has the docs in ER ever say what the rhythm is when you are there?

Debbie

The only thing that has helped me fend off these attacks is propranolol. I think because it blocks the adrenaline.

However recently I've begun to develop Bradycardia. For 2 years I was always tachy and my resting HR was about 90-100. Over the past month it has dropped to 40-50. Not idea why but it feels very weird, especially when laying down. However it will still get up to 120-13- if I go from laying down to standing. Maybe my heart is just worn out. I know the propranolol will help me with the adrenaline rushes but I'm scared to take it now because of how slow my heart beat is.

Interesting Debbie. I've never heard of SVT. I'll do some research thanks.

Is there anything I can use to see if it is SVT during an episode? Would a doc be able to tell if I have it if I'm not in the middle of an attack?

I really need some help. I get these major adrenaline surges a few times every week. Some times I am able to calm myself down before they spiral out of control. When I'm not able too, my body goes nuts. I get major convulsions to the point where it looks like I'm having a seizure, if not worse. My entire body shakes uncontrollably for 30 minutes or so and I can barely talk. I even strained my back one time because of how violent the shaking was. In addition my BP spikes up high and my heart rate becomes very fast.

Does anyone else experience these? It's landed me in the ER several times and they are unable to tell me why it keeps happening to me. It's always just attributed to stress and anxiety.

Does anyone else experience these? Is it normal in POTS? I'm a nervous wreck.

I have dysautonomia and CFS. My blood pressure doesn't get low (if anything it gets too high), but I have the classic tachycardia upon standing. Fatigue is obviously one of my main symptoms. I find in the morning after a good nights sleep I feel relatively decent. However if I take a nap during the day for 1-2 hours, I always wake up feeling absolutely terrible. As soon as I stand up my heart rate will shoot way up and all my symptoms are flaring pretty badly. Does anyone else experience this? I've had to stop laying down during the day and just fight through the fatigue because it actually reduces my symptoms.

Does anyone else experience this? Is this common in those with pots or should I assume it is something else unrelated to dysautonomia?

When my symptoms are bad my hands develop a very deep red/purplish hue. Also the veins in my hands are becoming much more visible than they ever were before I got sick.

Im going to give this diet a shot.

Can you give more detail on what exactly you eat?

Thanks for the response.

What about salt? How do you make sure you get enough sodium in? Or do you find that high sodium intake does not help you?

Hey issie thank you for sharing.

Would you mind telling me what symptoms you had that have drastically improved through this regimen?

I tried the low fat vegan thing for a few weeks. I'm pretty skinny and wasn't able to keep weight on while doing it. It also gave me terrible bloating and made my anxiety terrible. I'm willing to give it another shot though after reading this.

Can no one relate to this?

I wanted to make a thread on this and see if anyone else can relate to me.

I don't get the typical PEM symptoms most people talk about on CFS/dysautonomia boards. When exercising I notice negative side effects immediately. My body becomes very cold and I break out in a cold sweat, nausea, skin becomes clammy, dizziness, hearing loss, weakness, shortness of breath, and begin to feel pretty terrible for about 30 minutes. After I stop working out however, these all go away. Not immediately, but after an hour or two I feel "alright". I don't notice any symptoms that become worse hours/days after exercising like most describe with post exertional malaise. Any idea as to what this may be or what tests I should get?

Yes, that can happen with POTS. I get all those symptoms very badly. I started a thread about it the other week (called 'POTS and extreme "panic attacks"') and many other people were describing the same episodes. My HR has reached 180 during them. The other day my BP spiked to 155/100 and I had bad leg tremors, out of nowhere. An hour later my BP was 98/62. Adrenaline dysregulation seems to be one of my main problems, and these things seem to be extreme adrenaline surges. Panic attacks are listed as a symptom of POTS, because these are effectively EXTREME panic attacks, even though they don't have a mental cause. Adrenaline attacks would be a better phrase.

Edit: the blue extremities is probably cyanosis caused by adrenaline-constricted blood vessels and fast breathing. I get that too. But you could ask your doc or buy a home pulse oximeter to measure your oxygen.

Wouldnt a beta blocker help as it blocks epinephrine and its effects? I may try taking one again. I was on one before I started getting these episodes but had to stop taking it as it was making me too dizzy.

I know it came make things worse if you have MCAD so what tests could I get to see if I am having mast cell issues?

Hi. Sorry to hear you are experiencing this. Sounds somewhat like things I used to have when I was ill for the first couple of years.

Here's a link to a video of someone having tremors similar to what I used to experience. Like you, I would be freezing cold, unable to talk, with lots of other symptoms I can't even remember now. I think I would usually get really low BP though.

I have both POTS/NMH and ME/CFS. Suspect these symptoms were from inflammation in the brain and autonomic nervous system caused by either an autoimmune reaction to the primary infection that caused my illness, or to a viral re-activation that occurred at the time the symptoms occurred. I wonder if POTS and ME/CFS aren't subsets of the same disorder- or the same thing in many patients.

O God lol I can't even watch that video. Going to throw me into a panic attack thinking it will happen again.

But yea that's basically what mine look like.

Did you find anything to help this? It's pretty terrifying as it's taking place. I was thinking about asking my doc if I could try a saline IV.

Hey guys.

So for the past 6 months I have been chronically ill. I was DXed with POTS at Mayo a few months ago and given a beto blocker which only made things worse for me. I also believe I have CFS and am currently seeing a doctor to further examine that. Not sure if the CFS is the primary problem and POTS is just a symptom of it, or if its the other way around....

Anyways, I recently began to get these severe episodes that are new to me. I got the first one last week. It starts slowly and I can feel my pulse begin to rise. Then my entire body goes freezing cold. I start shaking/shivering violently, my pulse usually hits 130-140bpm, my BP gets to around 160/90, terrible nausea, disoriented, can barely talk, my extremities become extremely cold and turn blue/purple, etc.... It's dreadful.

Can this be POTS related? It's happened to me twice now and am terrified of when another one may strike. Was seriously considering going to the ER as it was occurring but was able to push through it at home. They usually last for around an hour or so and then I feel pretty bad afterwards as I wean out of it. I was reading of some similar experiences from people who have the hyperadergenic form of POTS so was wondering if this could be a possibility. Any advice/help you guys could offer me would be very much appreciated. Thanks for listening.

Hi Rachel,

This is my first posting on this forum. Interestingly, I have an appointment with the Mayo Clinic in Arizona next month and I am suspicious that my symptoms may be related to a mitochondrial dysfunction. I don't know much about them but it is a starting place for me. I have been to three Neurologists locally over the past four years. The last referred me to Mayo. My symptoms first presented in an episodic fashion with dizziness and brain fog leading up to extreme lethargy which usually lasts for the rest of the day. It is like being in an altered state of consciousness. From what I have read about mitochondrial dysfunction it seems to fit. I hope Mayo can sort it out. I am curious if anyone else has experienced anything like this.

I'm think I may have mito. I have all the classic symptoms.... Exercise intolerance being the big one.

Did you get any answers at the Mayo in AZ? Im currently a patient there and am going to ask about testing.

Big time.

My eyes have been horribly lately. My vision is has degraded greatly over the last few months, and they are constantly bloodshot.

Medicgirl..... I'm the exact same way.

I was into bodybuilding before my diagnosis and was at the gym 6 days a week. Once my POTS came, going to the gym became near impossible. Over the last few months I haven't been able to lift a single weight and exercising only makes my symptoms much worse.

Hey guys. Quick update.

My appointment at Mayo is in 3 more months, and I don't feel as if I can wait that long. Are there any preliminary tests or doctors i can see before I see Dr Goodman? Maybe some meds i can start that will help me to feel better.

The fatigue/brain fog/ is so bad lately that I can't even function.

Welcome!

Since your already going to Scottsdale Mayo. The doc to see there is Dr. Goodman. He can do the appropriate autonomic and diagnostic tests. Lots of different things can cause dysautonomia. You may be able to rule some of those out at mayo.

I live in chandler and grew up in scottsdale. If you get stuck let me know. I've slowly managed to put a team of docs together here. We have several members that also live here. So your not alone with the illness or here in arizona.

I may take you up on that. Thanks a ton. I've been lost in terms of knowing who to see.

Also, thank you Alex!

Thanks for the help guys.

I have an appointment at MAYO in the next few weeks. Hopefully they will give me some answers and I can get to the bottom of this.

Is their a reliable treatment for dysautonomia that will get me back to my old self or are those days over?

Also, what aspect of this disease causes the fatigue.

Hey guys. This is my first post here. I've been have a really rough year in terms of my health, and haven't gotten any answers from doctors. I came across dysautonomia a few weeks ago, and am pretty convinced this is what I have.

I am 21 years old, male, very athletic and in good shape. Around a year ago i started noticing a decrease in my ability to lift at the gym. My strength was evaporating week by week. This continued for a few months until I became unable to workout at all. Whever I start exerting myself physically I get very lightheaded, and get lots of cold sweats. Mind you, I am in very good physical condition, so this is very abnormal for me. On days I do manage to eek out somewhat of an exercise, I always feel sick after. Like I have the flu. In addition to an inability to exercise, I have severe fatigue all throughout the day. Some days it's so bad I literally feel on the verge of death. It's way beyond just a "tiredness". Some days will be noticeable worse than others in regards to my fatigue and all the other symptoms.

My body temperature is all over the place. My hands and feet are the majority of the time ICE cold. I am very sensitive to the cold weather. But then other times I will be very sensitve to the hot weather and I start sweating uncontrollably under normal temperatures.

I've developed depression, lots of anxiety, and my memory is getting pretty bad. Not sure if these are related??......

I also have postural hypotension. This as well has been progressively getting worse. After I stand up from laying down, I get extremely lighthead very quickly and come close to blacking out. It happens just about every time I go from laying down to standing now.

My pulse is very sporadic. Often times it will beat very fast, and other times it will beat very slow. It also has a very heavy feeling. Hard to describe. My pulse will be normal, but i feel each beat in my chest like it is pumping VERY hard. When anxious the tachycardia becomes especially bad.

I have been to at least 6 doctors over the last few months, and have gotten no answers. First they thought I might have diabetes, then chronic fatigue, then fibro, now I'm just stuck in limbo and still have no idea what it can be.

Does it sound like I may have a dysautonomia condition? It's not something a doctor ever suggested may be the issue, but after researching myself, I truly believe this is the issue.

I live in Scottsdale AZ so if you can know of any good doctors or clinics here please recommend them.