Must Be Typical...

[Kujiforo]

Last week I can say I had a REALLY good week. Despite feeling worn out and a few migraines, I didn't have any heart racing, trouble breathing, blood pressure fluctuating attacks. After three or four good days, I had almost accepted that my nightmare was about over. THEN one day I woke up feeling terrible and had horrible spells all day long...followed by a few more kind of bad days up until now. Is that typical of dysautonomia? Because that really bites. It gave me such false hope, though I must say I enjoyed my little break from the sickness.

My troubles and symptoms seem to vary daily. Today its been the subconsciously holding my breath/hyperventilating until my head feels numb spells. The other day my heart just decided to jump to 150 and my blood pressure spiked at 150/96. Then the tension headaches that feel like a band around my head and stabbing pains in the back of my skull. And of course, muscle twitching and aches all over. Here we go again...I guess. I wish those good days would come back now.

In a few hours I go to an EP Specialist to schedule more tests, including the dreaded Tilt Table Test, which is what I believe will truly catch this whole ordeal and make them believe me.

This has got to end sometime soon. One and a half years of **** and the doctors doing nothing. No medications, no treatment, no compassion. Its only by God I have made it this far! I just don't understand why everything virtually disappeared for a week, then just came back on me full force. I didn't do anything differently...

Can't wait until the day i wake up feeling good, and it STAY THAT WAY!

[lieze]

It could have been anxiety related to your doctor's appt.

I notice I dread things like crazy.

They seem overblown and huge tasks when in reality they aren't.

I have made everything like that in my head including driving, grocery shopping, appts, work.

I've wrapped a big giant taboo around things to the point I basically live in fear.

I also obsess with my thoughts and when I had the one surge at work instead of just dealing with the stress of being at work I had little annoying thoughts of worries (outside work) popping in and out of my head.

I do the same breath holding that you describe and then breathing too much and getting lightheaded. It has just taken me a very long time to figure out what was happening.

Also maybe the adrenaline surges are something that goes along with POTS that are random and unavoidable?

Try to relax as much as possible. I notice when I am the worst my muscles are all tightened up and I am clenching my jaw at times.

I get those spasms that work their way up from what it seems to be my diaphragm all the way up into my esophagus. They really suck.

If we could just go back to not knowing what it is to have POTS.

To not waiting for those awful sensations to come over us and being POTS naive I think we would have more better days.

[lieze]

Oh I'm so reactive things that seeing things trigger me I think.

I went to pick daughter up at a little bird camp thank goodness my mom drove us that day.

The kids were doing a song where they had to sit and stand very quickly and I got woozy just watching them and panicked and thought oh I couldn't do that.

I had to get out of the car then for something and my legs felt like rubber.

Sure enough I got back in the car and felt like death had to just lay my head back and go into myself. I think just watching the kids bounce up and down sent me into a type of panic induced POTS episode. So much of this for me I think I am doing to myself.

I need to learn to not freak out so much.

[mountain girl]

Like you I have had some good days, and thought maybe I was "cured". It is so disappointing when it comes back and one finds it was just a few good days. I have been strugling with pots for 2 years now and am so sick of it as well!

[Kujiforo]

I'm about to give up.

Went to doctors and they had scheduled me yet again with a normal heart doc, who wanted to do all the same tests that had done earlier this year and pat me on the back and send me home. I was supposed to be seeing an EP SPECIALIST. ER docs told me I needed the tilt test, doctors long ago told me I needed tilt test, but every FREAKING time, they want to do stress/echo and send me on my way. "Sometimes the heart just go fast!" They scream at me, "Ma'am, it is normal." "No it FREAKING isn't. I'm 24....I'm supposed to be able to do anything and exercise like I used to anytime I want, and even SIT without my heart rate shooting up to 170. How is that normal?"

I got an attitude with them finally. I'm sick of them putting things off and acting like nothing matters. I'm sick of being sick and no answers. So now they finally refer me to an EP Specialist....then had the nerve to tell me "It will be a long while before you get in." .....lolwhat? I've waited months for this appointment for them to tell me I am FINE, and sometime my 'heart just go fast'. Then my mom yells at me because I was fed up with the doctors ignoring me, saying I probably have a blockage. LMAO! I don't think so. That would have shown up already, and I have extra symptoms that don't go anywhere near that diagnosis. By the way , it has been 2 weeks since my stomach tests and NO RESULTS. AT ALL. These doctors are TERRIBLE and they do not care. They want a walk in, hand them 20-50$ visit, and send you home with nothing. Every time. FOR A YEAR.

Sadly, in the waiting room, an older man has the same symptoms, had been going for 3 years, and being told the same "Heart just goes to fast - its normal anyway" and he was pretty fed up too. Same tests, over and over, for three years for him. That's gotta be getting frustrating by now.

Is this how doctors just treat us these days?

I've lost all hope in the medical community. I'm sick of being toyed with.

If these next doctors do absolutely nothing, I quit. Its in God's hands.

[lieze]

Sometimes just giving up can help.

I've been there many days where I just say whatever I don't care any more and you know what happens?

It's like a weight is lifted off and I feel better.

Do you have any type of heart rate monitor that you wear?

Some of us have them and it can help you to figure out what things trigger you.

You can work on increasing your activity this way slowly and safely hopefully without triggering an episode.

It greatly reduced my fear to be able to see a number on my wrist. I've worn mine about 2 weeks and I haven't even bothered to put it on the last two days.

You can must figure out a target for yourself to stay below and do everything you can do up to that point.

In the beginning just walking to our mailbox or especially trying to pull the trash up our driveway to set out all the way back to the house I was like seeing stars-now I can do it.

So that is a sign to me I am getting stronger.

You can work to rehabilitate yourself this way.

Since you have had your heart checked out and feel it is okay you don't have to wait for these other things to start working on your endurance.

For some of us we just have to train our bodies to be able to do normal things again.

I will have heart rate times and occasionally normal where it feels weird to get up and walk around and heart rate only be 99 or less.

I do not understand what triggers it to shoot up but sometimes mine is not going extremely high.

I guess in time I'm hoping to have more of those days and less tachy days.

While you're waiting try to do what you can do without triggering the horrible tachycardia whatever that is for you.

I've also noticed it is possible to calm ourselves kind of a biofeedback thing so I guess I'm trying to work on that too. Kind of a I'm going to focus on feeling good and feeling relaxed doing things. That also brings the heart rate down.

I have many people in my life swearing to me that this is anxiety causing my heart to race.

I guess I believe they could be about 10% right.

Hang in there!

[Simmy]

Yes, Potsie's sometimes have a day, or even a few days in a row, feeling miraculously better. For years we've all been trying to figure out why this happens and while there are multiple, logical theories, we all still really don't have a clue. Just enjoy them when they occur and try not to overdo it, lest you pay for it the following days.

I'm glad you finally have an appointment with an "EP specialist". As you know, we all recommend seeing a POTS specialist, but many don't have the means to do so. At least you're heading in the right direction and standing up for yourself (maybe better to say, lying down for yourself), but don't give up, the answer is out there, you just have to find it. Putting this "in God's hands" is not the answer. Those who believe also say "God helps those who help themselves." You must help yourself.

You can start by documenting your symptoms at home. If you suffer from classic POTS symptoms, like >+30bpm when standing, the very best way to document this is to video record your heart rate and yourself, standing up from a reclined position, while wearing a relatively inexpensive chest-strap type heart rate monitor watch, like those used for exercise. You can buy one for less than $60, or maybe borrow one from a friend. Use the video camera on your cellphone to record it jumping when you stand and dropping when you lie down. Video doesn't lie, exaggerate, or make things up. If you're like me, your hr will go from 60bpm lying down to over 120bpm standing in less than 30 seconds, and drop at an ever quicker rate, so try to keep it under two minutes in length, as doctors have little time and even less patience to watch videos with patients.

If you show up next time and there's no tilt table, but rather only a treadmill for a stress test, don't leave angry, instead work with what you have. Before getting on the treadmill they first hook you up to all the wires while you're seated. If there's something on which you can lie down while they hook you up, insist upon lying down! If not, scoot down in the chair and elevate your feet during hookup. Either way, remain in that position for at least a minute, remaining absolutely still and calm. Your heart rate will be much lower than while standing. Insist that they observe and write down your reclined heart rate and blood pressure. When ready, stand up, but DO NOT walk. Wait. Watch your heart rate on the monitor and have your bp taken again. Only after that may you begin the "stress test" that we all know will show you to be just fine and dandy.

If you also suffer from blood pooling in your feet, there is one more thing you can do to help yourself, raise their eyebrows and perhaps drop a jaw or two. At the end of the test they put you in cool down mode for a short time before coming to a complete stop. In my case I was back down to about 120bpm while walking at about 2mph. I said "hey doc, look at this" as I moved my feet to the side and just stood there. The look on his face was priceless as he saw my heart rate rising to beyond 140bpm standing, then I got back on and started walking again and it dropped back to near 120bpm again. Blew his mind.

You can only use that which is available to you, but use it wisely.

Good luck.

[Kujiforo]

I don't know if I have POTS, but I do believe I at least have some form of tachycardia (Well, I know I do) and dysautonomia. Sometimes my heart rate just shoots up even if I am laying down and just barely move to turn over. I feel worse trying to breathe easy when laying down because I also have GERD, though they tell me that is not causing everything else, but more likely what is causing everything else is causing the GERD. So I have to toss and turn when sleeping, but sometimes my body goes INSANE when i do. I get the muscle twitching and my heart just takes off. I was okay laying down, besides a little short of breath a moment ago, but when I got up out of bed my heart rate went to 125 instantly and almost floored me. My blood pressure was good when I last checked it, just my heartrate was high. Earlier today is went a little low. Then a little high. Its all over the place whereas it used to just run low all the time. The ONLY thing I find that helps my spells is tying a cloth around the back of my left leg really tight. It eases up the dizziness MUCH and sometimes even slows my heartrate. And when I say give up, I mean on doctors. Its just more stress going to them and hearing "You're normal, go home and deal with it." than it is just to try to take it easy and deal with it.

Fact is, nobody knows whats wrong with me. Stomach and heart check out fine, lungs check out fine, and the doctors here don't believe in things much, or believe it is so rare that I cannot possibly have it. But seriously, if they've checked everything else, I want them to go out on that limb. Its wrong to keep me guessing at to what is wrong just because "Naw, you couldn't possibly have anything too rare." And really I don't care if it is rare or deadly even, as long as I know what it is so I can treat it properly and live until it even kills me. When Doctors do not know, GOD knows. HE is my helper. I am doing all I can. But I cannot help a sickness if I do not know what it is.

[Guest tearose]

Kujiforo,

Hang in there.

There is good news and not so good news...

The not so good news:

You may never know the first cause of your ANS issues.

The good news:

You will have many challenges but you probably won't die from this.

Try to use a heart monitor and get to understand when your heart rate is tacy and when your bp is low or normal or high.

You will learn how to manage better if you start observing what is happening and when and what makes things better.

You can keep looking for answers but you must continue to live with what you have now too. Since 1991 I have hoped, searched and been tested hundreds of times looking for a cure and have had many good remissions and some terrible relapses. There are several things that may be contributing to my condition but the fact remains that I have had to learn how to deal with the challenges and eek out some quality of life.

Keep one main doctor local and one specialist wherever you found one. Try to develop a treatment plan with their expertise and tweak it or kick it up a little with their help or feedback. Many of our doctors are nearly as frazzled as we are because the "good docs" keep looking for answers for us even when we are not before them.

I did not feel that stress caused my POTs but I decided to explore that theory instead of closing my mind to it. It was good to do for many reasons and in the end proved that in fact stress did NOT cause my POTS. I do not have anxiety but could easily have gotten that dx if I did not speak up. This disordered ANS can cause one to develop panic and anxiety if you allow someone to tell you it is all in your head or emotionally based.

Believe in yourself and your intuition and you will find better answers sooner.

with all best wishes and love,

tearose

[Kujiforo]

I believe with my whole heart that the drug Elavil caused this to set off. Beforehand I was sick with my PCOS and migraines. My doctor prescribed me Elavil for the migraines, which helped my headaches... but after a few weeks on the drug, my left side of my body went completely numb and my heart rate went to 200. The emergency room doctors concluded that I was having a life threatening side effect to the medication. Two days after quitting it cold, I was laying down watching TV when suddenly I had my first ever spell like I have now aside from the one while I was on the medication. My heartrate went to over 200 bpm then. Doctors said the medication was not completely out of my system, and to wait it out.

I have been waiting for over a year and a half now.

Though I was not healthy due to inherited issues, before the Elavil, I was NOT in this shape for so long consecutive days in a row (I've been sick with similar spells before earlier in my life). I was able to hold a job, exercise, and lead a somewhat normal life. I know the drug is not in my system at all now, but I still believe it did something horrible to me that may or may not be irreversible. My mom had a 7 month period of NCS from a medication she took. It took her body 7 months to get over it, though she still has spells every now and then. Knowing this, I kept held on fast, but 7 months came and went, and my symptoms were still there daily. My aunt went through a similar phase but for no reason...she'd pass out and sweat and have troubles breathing. They could not find out what was wrong with her. One day it simply vanished.

I haven't lost hope that it will just cure itself yet. I still believe there will be a day that I walk free. I honestly do. But the reality is that I have this now. But with my family history of people having these exact symptoms (I used to go through periods of them as well, long ago, for a few weeks a time -- they'd never found out what was wrong then, either, and the spells were not as severe) and them just vanishing, gives me lots of hope.

Thanks for all the encouragement. I've only had a breakdown about twice on really bad days, but I am very emotionally strong, so I'm glad for that or else I don't know what I'd have done by now!

[Simmy]

You mentioned rolling over in bed and heart rate going crazy, from doing almost nothing. That is normal in POTS, particularly if it is vasovagal in origin. Our heart rates tend to accelerate and decelerate much faster than others, which includes spikes from any little movement, even talking too loudly. Don't be surprised if your heart rate jumps 20 or even 30 bpm from sneezing a couple of times.

Take the advice tearose gave and use a heart rate monitor so you can learn what makes it better and what makes it worse.

[Kujiforo]

What about doing things like:

Hearing airplane roar or looking at the sky for too long.

Or watching things rush by as you're moving in a car. Or feeling vibrations from riding in the car.

Even musick can trigger it now. Especially songs that give me that good old chill that I used to love, well now it gives me the pleasant chill, but the bad symptoms along with it.

It seems every little thing triggers a little rush now.

Can someone REALLY be THAT sensitive suddenly with this?

[lieze]

I am in a bad way.

I feel all of those things and overreact to normal things.

I am trying to work up my nerve to take something for the anxiety.

The Xanax helps but I know how addictive it is and so I tend not to take it.

But just to prove a point to me the Xanax takes most of that away for me or has in the past and I even start to get an appetite and this is what makes me think my body has just gone haywire and that gateway is wide open for stress.

So I feel like by taking just a little medication for anxiety I can make myself more productive and maybe help shut that gate a bit and decrease this horrible sensitivity I have.

I know for a fact that I am having panic attacks so if you are unsure and obviously you feel the elavil caused it so I don't blame you for not wanting to try drugs. But if there is a way you can calm yourself naturally I would try it.

I start to hyperventilate and have trouble driving too.

I start feeling really swimmy when I drive feel sleepy at times and like I'm going to lose my vision. This for me is anxiety. As soon as I'm out of that situation I am fine.

By using my heart rate monitor(which tells me I'm okay-if not sitting down almost automatically drops my heart rate every time unless I have a bunch of adrenaline I've pumped out then it just takes a little longer) trying to regulate my breathing which I hope to get better at. I am still hyperventilating and swallowing air when the anxiety hits. Everything just tightens up on me in the chest and I feel like I have to mechanically breathe. (Xanax by the way usually helps with this-it loosens up my chest) and recognizing what an adrenaline surge feels like and kind of just riding the wave when it happens. I hope to get more functional.

My gut is telling me I could do a lot more than I do but it is fear stopping me.

Coincidentally the fact that I hold back gets me no where because then my activity is decreased and I am not working on developing stamina endurance or allowing my body to adjust to normal activity again.

If we can each find a way to safely be active at whatever level that is for the person-I think we can do more than we realize and build from there.

[Tammy]

Yes, you really can be that sensative to all stimulation.. including that feel good shiver from music that reminds you of happier days! I know it does that exact same thing for me and it really takes the fun out of it all. As I was reading your posts, I noticed that you mentioned your heart rate went really fast as a side effect from medication. Mine started with a really fast heart rate after an exhausting bike ride... just out of the blue, my heart starting racing out of control. Ever since that day, it's been down hill. However, it was only a fast heart rate and some weakness, etc. for the first 4 years, than it got a lot worse the past 5 years, so sometimes POTS gets worse with time. However, sometimes it gets better. So what I'm saying is be thankful for the level of function, even it's not much, that you have because there may be times that you are completely bed ridden. I really wish this illness had answers but after being to so many specialist, the Mayo, EP's, Neurologists, etc., and all the them saying that it's something I just have to live with, I've also given up and leave it in God's hand. For whatever reason, I'm sick and it is what it is. I can't change it or fix it. I sometimes get lucky and feel 'fairly' functional for a few days and then everyone around me thinks I'm better and it ***** when reality hits again and I'm back in bed. Today is a BED day -- and I know I'll probably have to take a small amount of Klonopin or Xanax to control some of the excess adrenaline my body is producing today as I'm constantly peeing and feeling like a 'rush' sensation is going through me along with all the other yucky symptoms -- which I don't like to take but it's the only medication along with a beta blocker that seems to mellow out the over stimulation senstations we all experience with POTS. Have you tried a benzo or beta blocker? Most of us do find they help some, but everyone is a bit different. Talk to your doctor and see what they think of those medications and if they might help you function a bit better.

[Kujiforo]

It really bites...

My mom was trying to convince me that I had a blockage somewhere, but with my symptoms, it just doesn't feel "right" to name that as possible diagnosis. It doesn't match up with everything that is going on.

The reason they haven't given me medicine is because they do not know what my problem is, yet. And they don't want to 'hide the problem'. I am also, and always have been, very sensitive to medications. My body treats regular doses like overdoses at times, thats how sensitive I am. I get a whole BUNCH of side effects from anything. If its a 'may make you drowsy' type, I'm knocked out in 30 minutes flat, even at lowest dosage, and sleep for HOURS. Likewise, I am extremely allergic to any cleaning chemicals, body sprays, etc. I break out, can't breathe, etc. I've always been this way.

I've been getting awful head symptoms recently. Feels kind of like...suddenly my brain doesn't get enough oxygen, and I yawn frequently for certain periods of time. I get tingly head and also head pressure, feels like someone is pushing fingers into my head on spots (and it does hurt). But I think the head pressure is likely my body stressed from sickness all the time.

I get boil-like bumps all over my body and, recently, a new skin symptom....dry skin rash that peels and is red and icky, kind of looks like burns. Its gotten worse today and itches a lot. Not sure of all of this is hand in hand with the illness I have, but probably so.

My body feels like its just attacking itself, to me. But I am thankful that some days, as I have seen, can some somewhat symptom free. I just wish those days occurred more often. I actually have been bed ridden on some of these days, but not many. But I remember those horrible few that had me in bed all day. Not fun at all...

[futurehope]

I feel that a 5 month trial of Remeron in 2001, given for sleep disturbance, set me "off" into POTS land.

I also am extremely sensitive to chemicals, smells and meds, so maybe my nervous system "went off" because of the Remeron. I cannot prove it, though.

To counteract my imbalanced nervous system, I find a .5 mg pill of klonopin very useful. This is a "depressant" and in the benzodiazepine family of meds. I might take .5 mg 2 X/week at night. (When I took it every day, it stopped having a good effect after a month.)

To help me feel more "alive" when I feel unusually dead, I'll eat some chocolate, or down some Coca Cola. Both have caffeine, a stimulant.

Other than the above, I have coping mechanisms for heat and for other situations that I have learned from this forum over the years.

[Simmy]

The head symptoms you described are likely not from stress, but instead you got it right the first time, lack of oxygen to the brain. That's what POTS is all about - for a variety of reasons not enough blood gets up there and symptoms begin, including your heart trying to compensate by beating faster.

Yawning too is a way the body naturally tries to get more oxygen in. I find that I yawn involuntarily mostly right after I lie down after performing a strenuous activity (like walking up a flight of stairs) and I'll have two or three deep, quick yawns in the span of five seconds.

While you're waiting to see a doctor you can try some other things to combat the symptoms, like drinking lots of Gatorade (for the fluid and electrolytes). Most of us add lots of salt to our daily diet (some more than 5 grams a day) and while I can't advise you to add anywhere near that much, adding a little for now could help, just watch for high blood pressure. Many rave over compression hose because it keeps blood from pooling in your legs, and even your abdomen, if indeed your problem includes pooling.

The one maneuver I've found to be most helpful when the tachy is getting out of control and I cannot lie down, is to squat, balancing on your toes, with the heels of your feet touching your butt. This position instantly compresses the vessels in your legs and squeezes the blood back upward. Try it the next time you're in tachy, if it slows your heart rate by 30bpm in less than 30 seconds, blood pooling is likely. But rising from a squat must be done slowly, inching your way back up, otherwise you'll go right back into tachy very quickly.

For the advanced user: While squatting, grab the underside of your legs with your hands and pull your stomach downward toward your knees. This squeezes the abdomen and pushes more blood up. Caution though, as that drops heart rate so fast that it could be too fast, and I've felt some minor heart pains afterwards, but for me worth it to get the tachy and head pressure to stop so quickly. I routinely drop 60 or more bpm in less than ten seconds when I need to.

[Kujiforo]

Another symptom I forget to mention that has me baffled.

Sometimes my jaws just ache for no reason, then they "lock up"....its like my brain forgets to tell them how to move properly. They feel "stiff". I don't really know how to explain it. This can last for a few minutes up to around 20 minutes. Anxiety? Something dysautonomia related directly?

[lieze]

I've had this too and I relate it to anxiety.

I get the stiffness in my jaw.

The reason that I relate it to the anxiety is I had a friend tell me about panic disorder and she described this as one of the symptoms she gets.

Another friend that also has bad panic attacks that lay her out and she gets to not acting right at all somewhat unresponsive has reported her throat closes up on her and she has lost her swallow.

This helps make me feel better because I have lost my swallow for just 5 or so seconds a couple times.

It makes me think that the effects are only temporary.

Now when I say this I don't think that our problem is just anxiety or panic.

I think the POTS is triggering similar type responses in our body.

[Kujiforo]

I lose my swallow too sometimes. I get anxiety attacks only when my body is sick physically. I call it a physical anxiety, not triggered by thoughts on my part. That used to be how I knew to go to the doctor. My body would have panick attacks whenever it was sick. Then I'd be diagnosed with UTI or infection, clear it up, panick attack spells gone, etc. The fact that i do have them tells me that I do have something wrong with me this whole time. Can't wait to figure out what!

Right now Im getting that strange wired rush feeling, even though I usually get it at nights. It *****. Got a headache along with it. Alot of my symptoms present right after I eat, which I just did. Hot showers also tend to bring on symptoms.

During my Upper GI test I was supposed to fast. I fasted over 10 hours, but for some reason my food from the previous day had not digested at all. The doctors scolded me for not keeping the fast, but I insisted that I did....and had a family member back me up on this. The doctors find it strange that my food just "sits there" in my stomach like that. I think a bunch of my weak episodes or feeling sick and dizzy after eating may be due to my stomach not digesting or handling my food properly. But they never can find out why it isn't.

Do people with POTS have similar problems with food? I'm thinking blood flow here. Does stomach need blood flow properly to digest the food? I often feel tingly like my blood doesn't move around right. I sometimes get low bp or high bp after eating, and always get tachycardia right after.

I know by now the symptoms are all temporary. I recover every time from the horrible waves of sickness, but thats really not very comforting when I can find no way of really relieving them during the attacks.