atomic811

It's possible to have a "poor man's" TTT where you simply sit and then stand with bp and hr readings done by a dr. Also when I had a TTT done they never gave me an IV. I didn't realize that TTT's are conducted with anything administered by IV until after I was diagnosed and read about it on DINET. So I am wondering if you could ask for the test to be done w/o any administration of drugs/IV.

It sounds like what you need most for your care is a specialist. I don't know if you have reviewed this list and it is possible to see any of these doctors:

http://www.dinet.org/physicians.htm

I am so sorry you lost your mother and you have these other challenges as well.

I have none local to me (checked the list before) and travel is very hard. However in a year I have to move to Pensacola FL and there is one there (also puts me closer to Atlanta and Jacksonville Mayo). However, I am not looking forward to being in FL with the heat. Yes a no drug TTT or a poor mans test doesn't scare me. I know its silly, but I get very nervous and mix nervousness with pots reactions and ..well you know how that feels and goes

Thanks

Yeah, mine is usually around 70/40 when I first wake up (when I feel the most awful), but it goes up a bit gradually the longer I'm awake. I just got a blood pressure cuff, so I'm using it way too much! Ha ha.

Hehe I use to use mine a lot too. Now rarely, but I got one of those finger clip things that tell heart rate and oxygen saturation. I don't care about the oxygen part, but its easier to check the heart rate with. My blood pressure is all over the place anyway. I can go from low to high so fast. I can stand and it can drop or I can stand and its too high. Don't worry the novelty

of your new BP machine will wear off eventually you will think "I bet its low...let me check...oh who cares."

Atomic, How are you feeling today? Your quote about Debbie Downer made me laugh. Sometimes I'm Debbie Double Downer myself. Hope you are having a better day.

Maiysa

Yeah I am not depressed about it today. I just needed to vent. I am still to scared to do anything about it right now..but don't feel as bad about it today. It was just one of those nights when you are sitting there and have a moment of clarity of what you go through and the long list of symptoms and think "crap!" haha. Then feel overwhelmed by all the tests you would have to do if you even did get a doc to believe you

EDIT: I did have this horrible doc once when I attempted a TTT (if you guys know kyli from youtube) I told her about it. It never took place, well it sort of did. I have a major phobia of needles and the phobic responce sent my heart laying down flying (IV bag). I just couldn't deal and that was that. Labeled "anxiety", but. I have videos of myself sitting with a normal heart rate and then just standing. I don't know how I will ever show these docs what is happening in their office since I have phobic responses to them. Also one flight of stairs brings my heart to 150-ish

Don't get me wrong I do have anxiety issues. I know that. This is just different than that.

This has happened to me too. I get that really sick awful pre-syncope feeling. Usually it goes away after a minute or two and I go right back to sleep. I know blood pressure normally lowers when people sleep, so maybe for those of us with POTS and/or normally low blood pressure it's more extreme.

I was wondering that too because when I was in the hospital the night after my appendix was removed the nurse took my bp when I was sleeping.. it stirred me a bit, but she got a low reading and was like "I have to take this again" and I said it will be higher when you do and it was. I think she got 85/50 (maybe it was 80/50 but between that) and second test when I was awake (cause she woke me up playing with my arm lol) was 107/75

This has happened to me before, a few times and happened again just last night. It's ridiculous. It's like my body is waking me up to faint. I also feel short of breath when this happens. It makes me think of some type of sleep apnea.

I am trying to think if I am short of breath during it. I do know I feel hot and the air seems stuffy. Yes exactly it is like I am fainting and my brain says "Wake him up...we must faint now." hehe

felt like I was going under anesthesia.

Yes, it does sort of feel like that mixed with fainting feeling. Yeah see for me I can't sleep well on my back either because I just feel my heart rocking my body, so I tend to sleep on my stomach. During that event I will roll on my side and that is when I sort of start to bust into a slight cold sweat and then roll back to my stomach and fall back to sleep. That is in part why I know its not a "sleep panic attack" because who has a panic attack and thinks..oh this again and goes back to sleep within a min or 2. You would assume I would be anxious during it, but I don't. Then again while I have a fear of fainting, when I actually do faint it is sort of relaxing mixed with a sick feeling anyway..then I am out. Only to return and have anxiety about fainting again later hehe.

I do have a question that I don't see addressed here and I have been unable to find online. This does not happen to me often, but sometimes when I am sleeping I wake up out of a dead sleep because I feel like I am fainting. I can roll over on my side during it and feel like sweat is starting to come out of me with a general very unwell feeling. Then I just go back on my stomach and fall asleep again. I have spoke to one other person who has many of the same issues I have and he too gets this sometimes. If there is a name for it what is it called?

I have told a doctor about it and they just said it was a sleep panic attack, but I am not panicking. I go right back to bed, it just feels awful though like you do before you faint.

Thanks Dani, I considered seeing a therapist again, it has just been every time I do they are pushing psych meds on me and unfortunately I can not take benzo drugs at all like xanax, ativan (the whole class) and the three different SSRI drugs I tried made me so ill and of course I was told "hmmm I never heard that before" or "they don't do that". Basically I am treated like its all in my head and that I am just looking for side effects. Then because I now turn down those drugs I am seen as "non-compliant" Maybe I just have not found the right doctors and therapists. This one therapist was telling me how my heart goes up when I stand because I have a phobia of standing which was so dumb. They all seem to think if I just do some breathing exercises it will just stop. I have also heard from main stream docs that I am just "decondisioned" which is not possible because some days standing my heart (though rare) is 96 and then the next day 140+ , sorry for rambling, but yes I am again considering seeing a therapist.

Thanks. Yeah I know when I wake up I will be more mentally stable. Just sometimes feel so fed up.

For several years I have gone doctor to doctor with no one listening. My mother died this past May and 2 days after she died I ended up in the ER having my appendix removed missing the wake and funeral. Between that, past health issues, lack of support system and dismissive doctors I have developed this crippling fear of seeing more doctors. I have become terrified about having a tilt table test to the point that I just won't do one even if it was offered. I react to so many medications its not even funny and have a terrible fear now of drugs from all the past reactions.

I don't know why I am even writing this other than to vent. I know only I can help myself, what scares me is I am not and feel frozen in time. I don't want them to do anything to me that makes me worse and I don't want to feel sicker. Don't get me wrong I have good days, but they are few and far between. I can't be in heat at all and showers ruin my whole day, exercise intolerant, pale face, massive digestive issues, no fainting though well I did faint 3 times in my life so far and a crippling fear of having my blood taken.

So now its like I have this problem and bad anxiety at the same time. So of course to the doctors its all "just anxiety".

Sorry to be a debbie downer..just in a bad space tonight.

(((atomic811)))

I've contemplated going to the ER when I couldn't get my hr down but I've heard about similar stories and it dissuades me. I'm sorry that happened.

Do you have a primary care DR? If so, does that Dr have privileges there? Does that even matter these days anymore?

Not currently no. They tend to get rid of me when I won't agree that this is all in my head.

Thanks to everyone else for their well wishes.

Yeah ignore this if I'm being lame but lay down.

I don't know if this will work or not because I'm not sure how we compare.

How long you've had your POTS if your case is more severe than mine etc etc.

And I am post ablation so there is no way how I can know what effect that has had on my tachy (whether it helped)

I do not have SVT's anymore but they warned me they could come back.

If I rest enough my heart will reset itself when I am tachy.

And I'm sure you know to drink plenty of water.

Did you go ahead and let them draw the labs when after he offered you the bag of fluid?

Having blood drawn drains me too but some of it maybe psychological.

When I was in Cleveland Clinic they drew so many vials of blood that I couldn't count and not to mention the EMT let me bleed out a huge amount trying to change over my IV tubing and I was still okay. Even with anemia my cardiologist said I was not too anemic to do the ablation-yes I felt like I was hit by a truck after but they gained valuable information and ran tests on a whole list of things that I know I don't have now.

I know that ER trips are frustrating but try to work with them if you can.

Also try some deep breathing to see if you can get yourself to calm down.

Do you have any Xanax? Not to over do it but it will bring your heart rate down.

Weird story-I ate a shredded chicken sandwich and a chocolate shake one day and my bodies reaction was a heart rate of 130 no other symptoms that would not come down. As soon as I took the Xanax my heart rate instantly came down to 90.

How are you doing today-has your heart calmed down any?

Ignore anything I say that isn't useful.

When I lay down on normal days it stops. Days like today not really, but I lay down a lot anyway to keep it in the 120s.

No diagnosis yet seen many docs though.

Xanax very long story short (many don't believe it) when I was tapered off after I started having reactions to it even on a low dose I went through a terrible withdrawal. I have been in my current state since. March 4th of 2009 I passed out sitting on my couch, since that day I have a fast heart and high standing heart rates. The xanax was given for anxiety (not severe anxiety or anything) I took it daily for a year before issues. Then off all **** broke loose. I have had my social anxiety since I was 15 and now am 34. I was only on pills for a year and now this is my result. If xanax didn't cause this it was perfect timing that it just happen to hit. I was on .25mg every 8 hours and by the time I was at .25 mg every 10 hours I started vomiting and withing weeks I fainted and my heart has been wonky since, that and my whole body.

The social anxiety haunts me now because doctors keep telling me its all anxiety. However I never had problems standing in the many years that I had social anxiety issues. Also I try to ask how my anxiety can only happen when I stand and stop soon as I sit on normal days , not like today where it is just high either way.

Yup I have been drinking fluids all day. I have had 3 gatorades the 32 oz ones and filled one with water and drinking that now. I am not hungry at all yet.

No because the labs they wanted to draw were the same labs they always draw and it is always the same results. Once I knew it was just sinus tach I figured there was no sense in stressing myself out more.

Funny about your chicken sandwich story I have some foods that set me off bad. Or a heavy meal, which I don't do anymore. Not that this is a food haha, but I take cool/cold showers because the heat from the shower causes my heart rate to climb very high.

Whatever is wrong with me in a few days I will be back to 70s sitting 120s standing like nothing ever happened.

Sorry you went through that ordeal. The ER is horrible for our conditions. As soon as we begin making demands they look at us like we're crazy, but good for you for standing (bad choice of words) your ground! After reading this, when I see my PotsDoc in two weeks I'll ask him to write a concise "ER Instructions for POTS" list on his Rx pad, to carry with me.

That 155bpm and 120bpm minimum, were they while lying down? If it was, did it get even higher when you stood up? If it was standing, what was it when you lied down? Or was it 155 up, 120 down? Sorry about all the questions, just trying to learn us.

I hope you're better now.

My normal is 76-96 sitting and 120's to 130s standing. However days like today with the heat from yesterday and today it was 120 soon as I woke up sitting. My normal when I first wake up before I stand is in the 60s. Before I left the house standing it was 155. Laying in the ER flat it was 126-134. I don't think I sweat very much. I don't even have a diagnosis yet all I know is I have been sick for 16 months. When it gets warm out I get a fever.

They didn't check it standing there even though I told them it goes a lot higher when I do.

After being sick all night and a pulse rate of 155 and not dropping below 120 I went to the ER this morning.

It was a giant waste of time. I did the EKG and it was sinus tachycardia. I explained what goes on and such. I was being treated like a neurotic. I stayed calm. I was told I was dehydrated and I explained how much I drink. It was blown off like I didn't know. OK fine I stayed calm.

I said before you draw my blood can you start an IV or it will make me sicker. (I know from experience that when I am like I am today my heart rate goes even higher and I get bad anxiety from it) She got an attitude and said "I am only taking a little" (6 viles).I said "I know to you it is a little, but I know my body and it will make me sicker". "Well I can leave the line in and if the doctor wants an IV I can add it" I said I will wait till you talk to the doctor about the IV and we can do the blood then" She got all huffy with this attitude.

I unplugged myself from the machines. Told her "I have had enough attitude over the past 16 months of this. I know what I am talking about, so this may not seem like a big deal to you, but it makes a giant difference in how it will effect my body."

She left and within 3 mins a doctor came in because I was leaving. I asked him if it was sinus tachycardia? He said "Yes". That he would have given me the IV bag. I said "I know that is why I asked for one before my blood draw". He said if I wanted blood work I could. I said "What will you test for? He said "Thyroid, electrolytes, CBC". I asked if they could run something else with it. He said no just standard. I said they will come back normal or slightly low on potassium like all the other times. And I told him I have a chest xray every year, since he was going to do that as well..

I expressed my desire to just be admitted so I could get all this out of the way and how sick I have been and unable to get place to place ect ect . He said because of my age and symptoms they wouldn't admit me.

He listened to my heart rate and said "You are very tachycardic." I told him my thyroid was 2.5 last time I checked and he said "is that normal? I don't remember the normal range." So I had to tell the doctor the normal range of the hormone.

I left. My paper says "No strenuous activity" "avoid heat" "follow up with a primary care doctor and cardiology this week" "come back if necessary". Diagnosis "Palpitations with sinus tachycardia".

At least it was sinus tachycardia and not super ventricular tachycardia that is why I went because it was getting too high and wanted to make sure.

Positive note: The two young girl techs who did my EKG were very nice.

Pic I snapped before the ER visit this morning.

http://i25.photobucket.com/albums/c52/atom.../Picture156.jpg

Sometimes, when I see someone running down the road, I have the irrational and absolutely unthinkable urge to hit them with my car.

lol lol

Yeah, I never would act on it. My heart finally slowed (while sitting anyway) about 6am and now I am no longer angry..(for now anyway haha) and as the other person said being angry does drain you more. Sometimes you can't help but have emotions pop up though.

I use to shower daily, sometimes two times a day. Now I am lucky is I shower once every 2 weeks. Even mildly warm water brings my heart rate into the 140's sometimes higher. When I am in there I have minor dizzy spells and when I am done for hours even sitting my heart rate is about 110. I am completely whipped out.

I run the a/c window units all the time. I think the person I live with is cold. Sometimes I feel cold and when I do I am thankful because I feel better even if my heart still races.

Sometimes when I am sitting and my heart is racing away and I can feel every beat I just want to cry. Not because it scares me, but because I am so sick of it. Soon after it started tonight I had to go to the grocery store. Standing only makes it worse. So I am walking around the super market with my heart racing and pounding. No one can tell because of course I look fine. I can't be mad at the cashier because of course she has no idea that me standing in one spot is making me feel worse. At the same time I just want to start smashing everything and fall on the floor and ball my eyes out. I don't think it is fair that I am in this all alone. I know "boo hoo everyone has problems" just sometimes I don't want any problem. I just want my body to leave me alone and feel well. I don't want to think or have to do anything special. I want to be free like all the other fools running around having a life. Anyone feel as angry? so angry you just want to cry?

Brian-

My tilt table was done at Ellis Hospital in Schenectady.

OMG are you serious?! Can you email me on here and tell me what doctors you saw? This could really be a life saver to me. Do you have POTS? I have only been at St Petes and Albany Med because I am in Albany.

Not that a TTT is that scary, Brian. Without meds, it's simply standing. You do it every day and know what to expect- unfortunately.

Julie

lol yeah unfortunately.

It may be worth the 150 mile trip to NYC to get to a doctor who understands autonomic disorders. I got my diagnosis formally confirmed at Columbia Presbyterian more than 13 years ago, before there were any specialists in the Philadelphia metro area who had a clue. I'd been sick for years and years, probably since birth as they now believe my condition is genetic, but I didn't get a diagnosis until age 32.

Also, for years before that, I'd just given up on looking for help, suffered alone, because I would have committed a crime if one more doctor told me it was either stress or anxiety.

Just my two cents to help you either confirm or rule out autonomic problems, and head you in the path of interventions that might help you have a better quality of life.

Nina

Hey MightyMouse, I agree with you. My only issue is how I will do it. There is no one to drive me, my parents won't help or even talk about it now. So my mom calls me once a week. I just talk about the news and shows on tv. My father (they are still married) never was very involved in my life. No more friends. The person I live with has no license. I really got myself into a pickle. I am sure I can get myself there, but I guess my concern is I will get ill and be stuck till my body allows me to function properly to safely get back home. On a side note it is scary going through all this alone, though I assume I am not the only one who has.

Brian, I just watched your benzo withdrawal videos. OMG, been there, done that and I can related to everything you went through, ESPECIALLY the stupid Dr's who know nothing about it and dispense bad information and sometimes very DANGEROUS advice. I was on a "low dose" of Klonopin for only 6 months when I started having some weird symptoms, realized it was the medication and decided to get off. I was told that I was on such a low dose, I could just stop taking it... so I did. BIG MISTAKE (as you know). This was back in 1997 -- I was 24 -- went through benzo ****-- by 2001 I was STILL in protracted withdrawal. AND YES Protracted Withdrawal Syndrome is real, it is documented and you're right, most Doctors are clueless about it. I ended up reinstating, figuring if I could stabilize and do a slow taper from there I might be able to get out of the mess I was in. That was a complete failure and I had to go through it all over again a few months later. Fast forward to 2010 -- I am still not right from that initial cold turkey. I have had disabling symptoms all this time and wonder if this recent POTS diagnosis is a result of autonomic nervous system damage either from the benzos, the cold turkey or from time spent on Paxil (which also had a horrendous withdrawal). I have a few other theories about the cause of the POTS -- (a neck injury from a chiropractor being one), but the benzo question has always lingered because it was from that point on that I never felt like myself again.

Anyway, I just wanted to ask you if you remember any of this -rapid heartrate while standing stuff- BEFORE the Xanax.

I do remember some events, but nothing like now. I too suspect the xanax or I wonder if it just set something off worse that was already there before, I guess I will never really know. Before the benzo I was bad in lines at stores and bad in heat, now though in the past 16 months it really is off the charts. I don't even bring up the horrific withdrawal to doctors anymore because as I am sure you know they don't believe in it.

Hi Brian,

I just wanted to welcome you here. It seems to me that you have come to the right place. Your symptoms are very familiar to everyone here.

You mentioned that you had problems with showers. My daughter is very heat sensitive, has a lot of pooling in her feet, and of course, the obvious problem with standing. We have found that a shower chair really comes in handy.

As for the tilt table test, my daughter had an IV put in before the test (needles don't bother her). At first they did the test without anything, and her heart rate increased from 75 to 152. They they tilted her back down and wanted to inject something, I'm not exactly sure what, as they had me out of the room. She told them no! They still diagnosed her with POTS, so I really don't think it's necessary to stick you with needles to get a diagnosis. Maybe you could ask ahead of time if they could do it without so that you wouldn't have anxiety about the needle to complicate things. (And by the way, I'm the same way about needles -- that's one thing that does get me to faint.)

I very much hope that you can find a doctor who will listen to you. You have so many of the symptoms of POTS, I just hope you can find a doctor who is familiar with dysautonomia.

Best of luck to you!

Thank you Dakota. That is what gets me to faint as well lol. After I have fainted from it in the past they always think minutes later I should be fine, but it wipes me out for a long time. No idea why, so over the years I have become very phobic of it. Maybe once I know what is wrong with me that is a separate issue I can work on hehe.

You actually don't need a TTT to be officially diagnosed, but it certainly helps to be certain, and Christy is right, you can take one without drugs.

I had my one and only TTT after I suspected I had POTS and convinced an unknowledgeable endocrinologist to "allow" me to take the test to prove my theory. I failed the test. I only went from 65 to 90. I was having a "good day". Once I found my PotsDoc/cardiologist and showed him my video and how my heart rate rises when I stop walking, the diagnosis was obvious to him and then began the meds... all the meds... yuck.

If you do go in for a TTT make sure you are lying flat and relaxed for the FULL 15 minutes before they take your baseline and begin to raise you. That is crucial and was screwed up on my test. I was down for only four minutes and that likely also skewed the results.

OK I will make sure. Unfortunately I feel I am not going to be able to really travel around since it is summer if that makes since. Recently I have been pretty bad off. (being that I will have to take myself). I was feeling better for awhile in the winter here (not really as flu like feeling). I have been looking at some docs that specialize in POTS and the closest one is 150 miles in NYC and some in NJ and one in VT. I live in Albany, NY. I am actually surprised for the capital of NY that I have yet to find anyone who has heard of POTS or doesn't confuse it with orthostatic hypotension.

When my son had his Tilt Table Test, he was not given anything. He stopped taking his meds several days before, and they did not give him nitroglycerin(sp?). I don't know the difference of why some people are given it and some are not or whether or not some doctors prefer to use it during testing. So not all Tilt Table Tests are done with drugs involved. That might be a question to ask when scheduling the test?

OK good, because I can not describe the anxiety stuff like that causes me. I fear that I would not give accurate results that hyped up. I never use to feel nervous just seeing doctors (just had the needle/blood issue), but now I do because after all the ones I have seen, with some yelling at me and others telling me I am basically crazy I feel worried before I even meet a new one now. It is like I am preparing to be attacked. Of course not all my doctors were like that. The one I admire the most just told me he didn't know. I admired his honesty.