Kujiforo

I live in AR and I drive to Little Rock to see an EP cardiologist. Not sure how in depth you've gone with your testing but he's been helpful for me with continued testing and medication adjustments. His staff has been friendly and helpful! Let me know if you're interested and I'll PM you his name!

Brye

I live in Arkansas near Little Rock. Going to EP Cardiologist soon, but I might be interested in this doctor. None of the ones I have seen have been supportive of trying to diagnose me or gracious at ALL really.

Most of my friends are wonderful. My family, not so much... So I can sort of understand. I just try to not listen to all they say that just hurts me on the subject of my illness. I've enough problems just trying to survive feeling like I am dying each day. So sometimes we just have to learn to shut everyone else's opinions of us out and learn who really supports us and keep them closer.

I haven't been in the sun, but if I go outside and come back inside it triggers it. :\

Also, my house doesn't have ventilation much so it can get extremely cold/hot/damp inside depending on weather.

The doctors won't treat me or even have a look. I went to the ER trembling from head to toe with excruciating headache. They wouldn't even check my head, just gave me pain meds (which didn't work) and pretty much said I was crazy. Healthcare is awful here if you don't have insurance. My mom went for a small headache and they took her right in and ran all sorts of tests.....because she has insurance. I go in feeling like I am dying and fainting all over the place, and they just send me home sicker than when I left without a care. Sometimes they just ask if I been taking drugs. I never touched a drug in my life.

I do usually get these at night when laying down. But lately they've been happening in daytime also. Like, right now, its hard to feel my head because so much pressure. And my muscles spasm in all directions on me. I'm trying to just ignore it but sometimes it gets painful. So I just sit and stare blankly trying to fight it off. i wish to God the doctors here understood and cared. Just having a tiny bit of relief would be so wonderful.

I feel like I am being electrocuted every day now. My brain feels hot then the electricity zaps to my muscles and they jump uncontrollably. With it comes a rush of "energy", yet I feel numb and week, but like my body wants to rush off. It isn't anxiety. It seems more to trigger when I go from sitting/standing to laying down. Laying down makes it worse,e specially when I am tired and want to sleep. My muscles physically jump. Family members touched them and said it feels like my body is trying to jump out of my skin. My head feels like someone is sitting on it when this happens. It usually happens out of the blue and tends to get worse if there is lightening/thunder/rain/damp weather OR excessive heat that day. And the weather has been horrible for the past two weeks here.

What is this?

Oh, and it also can feel like sometimes my skin is on fire from within. This actually leaves my skin dry and cracked and blistered! Something crazy is going on with me physically and I can't stand it. It makes me want to go jump a cliff sometimes! :\

I haven't been formally diagnosed with POTS or dysautonomia, though the doctors are finally swaying that direction after every other test has come back negative.

But let me tell you...... I am tired almost all the time, for no reason at all. Sometimes my strength is there for a bit, then zaps out of me instantly, as if someone has a syringe and is sucking it out of me as I sit there.

I am especially exhausted:

1. During mornings after I first wake up.

2. If it is hot or stormy outside.

3. After taking a shower.

4. After standing/walking for more than 10-15 minutes.

5. After eating meals (especially large meals).

Most people believe I do have POTS due to my HR increase WITH fluctuating blood pressures all the time. But no diagnosis, but if this is what I have, then let me tell you, the fatigue and physical AND mental exhaustion is real and can be almost disabling (in my case).

I don't know if this has to do with the extreme heat + stormy weather here (which makes it hot AND damp), but lately Ive been having those dreaded adrenaline rushes (if that's what they are) multiple times a day, horribly, for 10-20 minutes each episode a piece, even during the days when I am awake. Usually I only have them at night time during sleep or when trying to go to sleep. I honestly believe it is weather oriented. I've got sinuses and ear infections now as well as a tension headache I have sustained for about a week with little to no relief (going back to doctors for that soon). I get these hot flashes where it feels like I am burning up, usually following a trip from outside to inside the house, so that's why I'm thinking the weather is getting to me.

It's horrible and I am really in a slump, especially since not long before I had a full good week of little symptoms at all....

But i still believe its the hot, damp weather that is to blame for my current situation.

No matter who you are, what condition you have, what you've been through, no one can ever understand your heart. They're not you. I've found that God can and does. That helps a ton! Friends and family come around :-P

<3

I rely on God everyday, especially days like today when I feel so bad like I am dying, with high anxiety because my body is in so much pain. HE is the only one who does know, even when doctors do not know (I have yet to be diagnosed with anything other than GERD). HE cares when others do not care. HE understands when nobody else can!

Right now I have this horrible crippling pain in my side. I don't know why. But He knows! And He has promised me complete healing in His time. All He expects of me is to wait, patiently, upon Him and trust Him. I pray for so many, and many others pray for me. He will bring each of us through. Just have faith.

Heh, then a huge thunderstorm came through. I guess that answered my question why I am having them so bad lately. I always have them right before and after a thunderstorm. I just get the tingly, pressure behind eyes and on top of head kind. I don't know if that's migraine or what. My mom suffers from the same thing, but hers are so severe she screams and kicks around. I hope I never get them that bad.

Ive had these before, but this has been ALL DAY LONG. Tingling on top of head and extreme pressure on head and in ears, feels like my head is full and about to explode at any moment. I get zaps to it too, feels like an electric just went through my head and makes me jump. My blood pressure was a little high but nothing too bad, so I don't know if that can be it. Still, this feeling is awful. Anyone else get this? What is it?

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.

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?

My limbs are always cold, but I sweat all the time now too. I've always had cold limbs. The sweating just came on with the sickness. Used to, I could never sweat, even in hundred degree weather.

I'd have about 30 cents for complete blackout/faint. But countless more if near fainting (just vision going gray/black with no hitting the floor) counted. I'd be rich then!

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...

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?

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!

My latest musickal piece. I decided to sing an english cover of HoukiBoshi (Comet).

Yeah, I have the same things as well. Haven't been diagnosed with anything yet. These feelings are strange and annoying to me. It mostly happens when I am trying to sleep or relax, they seem to kick in. I get angry at them, but yes, I know exactly what you're talking about, especially with the heat and shock/electric sensations and tingles in the head. I have severe muscle spasms along with the episodes. They really interrupt sleep (when you try to sleep with it going on) and daily activities.

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.

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.

Yes. I think morning are some of the worst, as well as evenings when I get sleepy. When I wake up, I feel like my limbs are just stapled to the bed, seriously. It takes so much energy to just open my eyes. However, I also stop breathing in my sleep for periods of time, usually when I am having migraine problems...my mom also does so (and is sufferer of chronic migraine) and she told me stopped breathing in my sleep could make me feel weighted down in the mornings, almost paralyzed.

Not sure if this is what I am having. I have it whenever I lay down. Especially right before I try to sleep, or sometimes waking me up from a sleep. My heart is fast, I feel as if my body is made of wires and those wires are short circuiting, my thoughts spin, my body tingles....it feels like I am rushing about without really doing anything. I always attributed it to abnormal rushes of adrenaline, but I'm never sure what it is. It happens to me ever so often.

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!

I like doing creative things, when I can, to relieve stress. You can show off your art and musick and everything else. Its a nice way to relax and share things to take your mind off of illness.

I practice some animation recently. I've never animated clothing before, but I think my first try is pretty okay. I also sing the song in that clip.

That's just one of my recent creative endeavours. I'm actually making a full animated opening to a song I will sing that my brother composed to.

Here is the instrumental of the song, Binding Fates:

Well I hope to see some art or musick or videos from the creative folks here. I really enjoy looking at others' creativity outlets.

http://www.facebook.com/Windszor

My facebook.