Yet Again ... Does This Sound Familar To Anyone

[suziebear]

Hi, Again !!!

I have been having a really bad few weeks. My blood pressure is a little lower then normal - not low but just low for me (90/60ish).

I keep getting this really bad internal shaky / tremoring feeling. It starts in my chest and goes through my whole body. I do not physically shake - but feel as if I am inside. With this comes on an electric feeling in my whole body. Like I am having a shaky electric current feeling. This is a scary feeling but I can cope with this.

But then on top of this I was getting these horrible spells where my chest gets buring hot and I have an intense dizzy spell. I get this horrible wave come over my whole body. A wave that I can't describe, kind of shaky, kind of dizzy, kind of adrenaline rush - I know I am not doing a great job of discribing this hey.

I also get a tingly feeling in my head that is not quite right. Not painful at all, just tingly. I feel really spaced out when this happens as well.

The problem is, this is happening even when I lie down. I am super dizzy standing, I understand this, though my blood pressure does not drop much but my heart rate certainly goes high.

I can have waves of all this then I can have times when it lasts all day. Does not come and go but stays there. I am also getting tingly feelings in my body and skin.

I understand my headaches, chest pain, dizzyness and nausea are POTS. I can even to an extent put my glary vision down to POTS. But the rest of it. Does this sound like POTS??? Does anyone else get any of these feelings with POTS???

I have given up on the florinef - really did bad things. I am super intolerant of medicines so am struggling to get on anything for pots at all. I am still trying 1/4 atenolol at night (I am scared to take it) and still on 1/2 mestinon a few times a day but this is not helping. Am thinking may need to add the midrodine in but I am worried about the blood pressure spikes and not being able to lie down as when I feel really bad I go and lie down to try and help.

Please if this is at all familar, can you possibly share your experience with me?

Thanks for all your help and patience.

Susan

[Justpots]

Hi Susan,

I have been suffering from POTS for 2.5 years now. Diagnosed in September 2008 and second diagnosis (after the first was questioned) in October 2009. Over this time I have had many weird symptoms. I have experienced adrenaline rush feelings and a wired, hard to settle down feeling, especially at night when laying in bed. I get little tremors and my leg jumps slightly in bed (not all the time but comes and goes).

I have had the electric feeling, like sharp electric shocks all over, down my arms and into my hands. Hate it, it comes on quickly and only last seconds but such a scary feeling when it happens. I have sharp pains in my head. (Had three scans over this time, two CT and an MRI), all came back normal. I tried to explain the electric shock feeling and tremors I get to the Dr. He sent me for a nerve conduction study which came back normal. After many ECG's, Stress tests and heart eco, Tilt Test confirmed POTS. It was noted that I had an 'Extraordinarily high output of adrenaline'. I am not surprised that is how I feel.

I have also had a few bad weeks. BP really bad. Last week at work 160/98 and stayed up most of the day. Went to GP who first said "I doubt it was that high". Then he took it three times and admitted it was very high. I then spent the next day doing 24hr urine test for pheo(Adrenal tumor)...normal again! I then had three days of low blood pressure 90/60 and even 70/40 at night. So after a week away from work, I dared to go today. I have to get up at 4.40am to arrive at 6am. Felt okay until the afternoon, got very dizzy and bad headache all of a sudden. Got home and had low BP! One of my most troublesome symptoms is chest pain. Also get that hot feeling and have chest pain most days.

I started taking beta blocker atenolol 50mg in February 2009 (one in the morning). This seems to help with the palpations in the first half of the day but usually about 90 bpm in the evening. I have taken this for some time now and tolerate it quite well but not sure how much it is doing???

I tried Florinef in March this year, did not agree and have severe headaches for weeks (hence another brain scan). I felt terrible with the headaches and blamed the Florinef so stopped taking it. Not sure now as I still get the headaches, whether the Florinef caused it. Now confused what to take...do not want to have the high BP...I don't know, wish I had an answer for you about the meds! My Cardiologist has told me to take Norvasc but worried that will drop the BP too much?

Lastly, my eyesight is suffering, blurry vision and a black eye floater (in my right eye) that has not gone awayI after four months. I am sure there are other symptoms I have failed to mention. I usually handle all of this quite well but have had terrible mood swings and have been so angry lately with the confusion of all this. Trying to stay positive and concentrate on the good things...my family and two beautiful children.

I hope this finds you having a better day and answers some of your questions. At the very least, hope you feel less alone and you are not going mad...these crazy symptoms do exist!

Take Care, Justine.

[suziebear]

Justine,

Thank you so much for your reply !!! You will probably never know how much it helped me and hit home at the right moment - right when I needed to know I was not alone.

Your reply was so well written and as much as I wish no one else in the world had to go through what I am going through, It does help to know I am not alone.

Can I ask, the Atenolol - did it drop your blood pressure when you first started taking it?

I only ask because every time I take one it seems to drop my blood pressure to around 80/50. The doctors have told me to keep taking it and after a few weeks my body will adjust and it won't happen so much. I struggle to take the second day in a row as I am not convinced and it scares me the thought of my blood pressure dropping and passing out.

I understand the two lovely children. I too have an amazing husband, 2 wonderful children (5 and 8 months) and all I want is to feel well enough to look after them. It scares me every day taking my son to school that something might happen because of me, or I pass out with my baby in my arms etc. Crazy thoughts but I can't help it.

Again thanks so much for the reply. I really do apprecaite you taking the time.

Susan

[peppermint patty]

Hi Susan! It sounds like me too and all my tests come back fine. I am the healthiest sick person around. I am on a beta blocker. I still have spikes in blood pressure, but not as high. It goes from 90/60 ( reg for me ) to 140/90. I get very ill when this happens. All these strange symptoms and the doctors, just don't understand. Hope you are feeling better----Pat

[DizzyMe]

Hello Susan,

Not sure I can help much but just to say that I can relate to similar sensations.I get electric shock type pricking all over my body at times and waves of something hard to descibe but with a dizzy alarming sensation and feel shakey during and after.I have yet to find a link to why this happens, my specialist put most things down to blood pressure drops.

I can very much relate to the fear of something happening when alone with my children(5 and 2 1/2yr twins),I was almost scared to leave the house when they were smaller.

I have recently started on Atenolol too but am also worried about it dropping my blood pressure and it seems to linger in my system and drop my siting heart rate too low by day 2 or 3.My cardiologist has suggested I take it every other day and see how that goes which I am about to try.Maybe that could help you.

Hope you have a better few weeks soon.

Melanie.

[Simmy]

Yup, me too, crazy quick vertigo-like feelings, electrical buzzes, shakes, rattles, rolls, snaps, crackles, pops. We're all in the same leaky boat.

I'm on Mestinon, Midodrine and Florinef (Fludrocortisone) amongst others. Midodrine helps, but definitely raises bp too high sometimes while lying down. The great advantage of Mestinon is that it does not raise bp while lying down, but only when standing. Perhaps you and your doctor might consider raising it to a full (60mg?) instead of half. I was also at 30mg x3, then raised it to 60mg x3, but then dropped it to 60mg x2 because of late afternoon stomach cramps. Lots of trial and error.

[HoudiniCat]

Count me in too. I was dx?d with POTS back in ?07 and used to get these episodes quite frequently. But its been awhile since I?ve last had one and thought maybe they?d gone for good. Wishful thinking. I just had a really bad one on Sunday. Probably not even as bad as they once were for me but since its been so long since its happened it really freaked me out. The same intense shaky/dizzy feeling you describe with the electrical shock sensation running through your body. And then waves of burning heat starting in my chest and radiating throughout my body. Most times these episodes would come and go but sometimes (like Sunday) it was all day and night long. My POTS doc used to chalk this up to adrenaline surges and I really never found a medication that helped alleviate this. I don?t take any meds now (haven?t for years). Oh, also have the wavy, glary vision and raining down of eye floaters when this is happening too. Sorry, I don?t have any great advice just wanted you to know you?re not alone.

[toddm1960]

Hey Suzie,

Add me to the list, all the exact same sypmtoms, it is very nice to know other are feeling them also. My only problem is with beta blockers, they negitively affect mitochdrial function so I can't take them. Hope this helps you relax and get through the crazy things are bodies do.

[Justpots]

Hi again Susan,

Yes the beta blocker did drop my BP at first but it did seem to settle down after a few weeks. It never dropped it low enough that I fainted but having said that I have never fainted with POTS. Do you have fainting episodes?

My BP is still quite low at night and in the morning but raises up to normal during the day (on better days)! Made it through another day at work today and no off for a few days, which is a much needed rest.

I understand your concern with the children, especially as yours are so young and do not understand. My daughter is 9 and son 8, so they are starting to understand when I am not well. They say "Oh that POTS thing again."!!!

Take Care,

Justine.

[Kujiforo]

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.

[nmorgen]

Hi,

I have very similar symptoms. I get the internal shaking, which is very disconcerting for me. I also get the weird electrical shocks. I have to say that mine don't go away in a few minutes. Mine seem to last and last and last... The internal shaking has lasted for days. I also get the burning almost stabbing feeling in my chest, but it doesn't radiate through my body. The most it does is move into my arm or my toes. I also get fluctuating bp and occasionally bradycardia. You are definitiely not alone.

I have been diagnosed with small nerve neuropathy. I think that might account for the electric shock and maybe the burning sensation. The only medication I am taking is clonidine. It has helped keep me from dangerous bp and pulse spikes, but it hasn't really helped with any of these particular symptoms.