HopefulLady

Thanks Arizona girl for all the info and tips !! I have a costco near me I will be going to pick one up !!! BTW arizona I had the catchecolmines checked in a 24 urine along with epinephrine, nor epinephrine and dopamine all were normal ... And blood work done full endocrine workup all normal.

I just took my pulse using my heart rate monitor I am at home resting laying down its now @ 84 ....

This is what's so weird 3 weeks ago for my regular visit my blood pressure was 126/70 ... I mean my blood pressure just jumps all over the place. Maybe I should monitor it at home too? I just feel so nauseated right now. My blood pressure has never been over 160/100 at least not caught in the doctors office. I assume being on a beta blocker is going to bring it down.

No Simmy normally when I am resting my HR is in the 60's 70's sometimes 80's ... BP is always all over the place it can be normal one minute and high the next When I got there I walked to the back room and they strapped me up to the table and test began they did not let me relax flat for 15 minutes so 110 is just walking back laying down and then getting tilted right back up ... The thing is I never knew my bp got that high while I was on my feet. But I was calm throughout the whole test I just felt like my toes and feet were burning like pins and needles. And My head hurt after the nitro. But my heart was pounding they said it was all sinus tachycardia no arrythmia's were found.

Wow I am so tired I could sleep the rest of the day. But the good news is I finally have a diagnosis. I was officially diagnosed today with POTS and although I did not faint during the TTT my heart rate and blood pressure spikes were out of this world. They said I qualified to go vanderbilt for further testing. They are starting me on a beta blockers ASAP. I went 45 minutes didn't faint even after nitro was administered. Here are my results Supine: HR 110 BP 162/87 Tilt 00:41 HR 144 BP 171/95 2:50 HR 145 BP 170/88 5:50 HR 139 BP 178/92 8:50 HR 136 BP 208/94 11:50 HR 127 BP 187/95 14:50 HR 129 BP 201/85 15:35 HR 132 BP 183/82 17:50 HR 135 BP 161/88 20:50 HR 138 BP 177/86 22:13 HR 135 BP 176/84 ( NITRO ADMIN) SUPINE 24:46 HR 137 BP 156/90 25:23 HR 151 BP 150/90 ( TILTED BACK UP) 26:14 HR 147 BP 168/85 28:34 HR 154 BP 156/87 31:02 HR 150 BP 133/77 32:50 HR 152 BP 154/74 36:43 HR 146 BP 157/79 38:50 HR 144 BP 154/79 40:58 HR 149 BP 159/67 42:46 HR 145 BP 179/71 44:53 HR 143 BP 148/86 47:06 HR 138 BP 145/78 SUPINE : 48:22 HR 129 BP 148/77 49: 48 HR 110 BP 156/88 STANDING 50:50 HR 149 BP 155/76

Well because I am on the effexor my heart rates doesn't jump drastically like it did before when I was off the medication. So I am sure they will most likely have to use that Nitroglycerin to induce my symptoms because the medication I am taking does help greatly. I am just guessing because I know how I feel on the medication versus not being on anything at all. Maybe they won't need it but if they do I am just afraid of what the medication will do to my body. So that is the part I am not looking forward to.

Do any of you when you stand or change positions lying down get this throbbing pressure like feeling in your head almost like you feel the blood moving really slow from your head and it throbs and your hearing gets really faint it lasts about 30 seconds and then you feel ok. It doesn't hurt it's just this throbbing pressure sensation in your head but it also makes my hearing go really low too when it happens almost like that sinus pressure feeling without your sinuses acting up LOL. Maybe it's my blood pressure and i don't even know it.

Ok I am gearing up for my TTT tomorrow @ 9:00 am ... I don't know if I should be nervous or not LOL.. Those of you who have had this done did you bring your music players to try and relax while going through the test. I think more than anything i am scared of how I will react to the medication they give me in the IV??? Any encouraging thoughts or ideas on how to get through this test would be helpful sorry if i sound like such a baby but I have had some scary reactions to medications and I guess I am just nervous about the test.

My catecholamine was normal too!! See your numbers look like mine I haven't had my official TTT which is this tuesday. But I have a heart rate monitor (sport's watch) .. I can track my heart rate laying down it's usually low 60's-70's Sitting high 80's 90's .. Standing 130 and up. And my blood pressure can be 110/70 all the way up to 160/100. This is what I have seen anyway throughout the years I have been dealing with this monster. Usually dizziness and High BP is apparent when I am having these flare ups and they scare the living day lights out of me because I have the flushing feeling the Gi issues and feeling faint all at one time. I am not a fainter either I have never fainted but I have felt faint many times. Laying down and ice cold water seems to do the trick to bring me out of it. Thank you for posting your TTT results it's interesting to see. Seems like the longer you are on your feet the higher your heart rate goes. Also heat is a major problem for me it will make me sick I try to keep cool at all times. I hate the heat LOL

Yeah that's basically what happens with me either my BP is normal or it's high. I did read somewhere that in order to be diagnosed with pots your bp does not have to fall and that many pot's patients have little if any drop in BP at all. And some have increases. I was just wondering if their was anyone here who had normal BP or High BP at the time of flare ups. My blood pressure is all over the place but I have never had a low reading.

The lowest mine has have been was 90/64 ... it is normally around 110/75 unless I am having a spell and then it's high. Although I have never monitored it at home. So I guess I don't know if it's ever gotten too low. But the times I have felt bad like I was going to faint with tachycardia my blood pressure is always elevated.

Yes I talk myself through attacks all the time. It's sometimes all I have and I hate when other people try and talk to me while I am going through one. It only makes it worse! your not alone

Ok looking back at my charts and medical records I don't have low blood pressure drops at least they have never caught it during any visits. Mine are either normal or high with the highest reading being 160/100 this was caught in the ER when I had an episode. I was using the restroom I stood up and felt faint. When I got back to my bed I told the nurse I was having symptoms she hooked me up to the monitors and my heart rate was 170 and my blood pressure was 160/100. This was just from standing up after using the restroom. I obviously felt like crap. My question is with POTS can you still have it without a dramatic drop in blood pressure? Usually when I have these attacks my Bloop pressure is high not low.

I am having my tilt table done on Tuesday .. But my doctor only uses nitroglycerin in his office. I asked about the Isoprterenol because from what I have read that stuff works on adrenaline. I know I would def have a seriously bad reaction to that stuff. But I don't know about the Nitroglycerin because I wasn't sure if it stimulates that part of the nervous system that produces that adrenaline effect that my body does not react well to. Because I am on medication that does help prevent these adrenaline surges I am worried about the doctors not seeing my symptoms so to me the Isoproterenol based on what I have read would be the key to reproducing my symptoms during the test. However My doctors don't use the Iso in their office. I am wondering if the Nitro will have any effect on me I assumed it only affected those who have low BP which I don't. Mine is either normal or it's high.

Ok now this is pretty weird. Whenever I am having a dizzy spell or attack ... I feel the need to have a bowel movement maybe 3-4 times and I get this weird rush to my stomach and a slight cramping sensation that does go away after I have passed a stool. This happens a lot when I get these hot spells with dizziness. Is that adrenaline that is causing the frequent need to pass a stool and the stomach rushes with the dizziness? And my face and the back of my head literally feels like it's on fire but I am not red usually I turn pale.

Anyone deal with floater's and light sensitivity? I know I always have to go outside with sunglasses. Also this is really strange do any of you have issues with certain lighting that brings on dizziness like school lighting or hospital lighting even some stores like walmart? I notice when I am in a certain lighting setting I start feeling really strange like my vision is weird or something. Also have any of you ever seen like black dots not the wiggly lines but actual small black dots almost like seeing stars but black dots around you they are really small like the tip of a pen? LOL I swear sometimes I just feel like I am an alien with the odd things that happen to me.

Ok I am wondering what the difference is between these 2 drugs Nitroglycerin VS Isoproterenol when used during a tilt table test. What sort of reactions or effects do they have on the nervous system? Do they produce the same reactions? And why would a doctor performing a TTT use one over the other?

Cardiactec I am so sorry for what you have had to go through .. People can be so cruel and thoughtless until they are put in a similar situation. I know how you feel I really do. I went through this same stuff even with family. Being sick really makes you appreciate everything in general and teaches you to be more patient and compassionate with others. Your not alone even when other's don't understand you .. You have many of us here who do! I have learned to just suck all the crap up and not worry to much about people who are not really concerned about me . Just getting upset or stressed only makes our illness worse. Everything will be ok just try not to let it get to you. Smile it will all be ok

WOW ramakentesh I sure wish I had some like you to be at my doctors appointments with me LOL ! You really know your stuff!! About IST ... Usually patients who have this have high resting heart rates over 100? So typically you would not see someone with IST laying down and their heart rates be in the 60's? They tend to run over 100 all the time even at rest? I am printing all this stuff out! I really appreciate all of your knowledge regarding this. I have always had a hard time understanding how this Effexor stuff works in the brain. And when you ask a doctor they can never seem to give you an answer that makes any sense! So thank you for taking the time out to answer my questions!!

I actually read something on wikipedia about it here it is Causes The causes of POTS are not fully known. Most patients develop symptoms in their teenage years during a period of rapid growth and see gradual improvement into their mid-twenties. Others develop POTS after a viral or bacterial infection such as mononucleosis or pneumonia. Some patients develop symptoms after experiencing some sort of trauma such as a car accident or injury. Women can also develop POTS during or after pregnancy. These patients generally have a poorer prognosis. In one large test, 12.5% of 152 patients with POTS reported a family history of orthostatic intolerance, suggesting that there is a genetic inheritance associated with POTS.[8] So far no one has provided an explanation for POTS which is applicable to all sufferers, however there are many theories; Alpha-receptor dysfunction may be occurring in some POTS patients[9]. Alpha-1 receptors cause peripheral vasoconstriction when stimulated. Alpha-1 receptor supersensitivity may be causing dysautonomia in some patients[10]. Beta-receptor supersensitivity may occur with hyperadrenergic states in some people with POTS[11]. Hyperdopaminergic states may be the underlying problem for some people with orthostatic intolerance. Some patients have been found to have a significant increase in upright dopamine levels[12]. Free plasma norepinephrine also tends to be higher in these patients. Reduced venous return is one of the main mechanisms that causes POTS symptoms. Venous return can be reduced due to conditions such as low plasma volume (hypovolemia), venous pooling and denervation. A hyperadrenergic state may result as the body attempts to compensate for these abnormalities. Sympathetic Overactivity is observed in many POTS patients. The sympathetic overactivity can be secondary to a number of factors, some of which may be peripheral denervation, venous pooling, or end-organ dysfunction. Sympathetic underactivity can also occur in some forms of orthostatic intolerance[13], such as pure autonomic failure.

Oh yeah baby MSG!!! I have to stay away from that stuff it sends me into a spell of dizziness and tachycardia. When I order chinese food I tell them NO MSG!!! There are a lot of things that have MSG in them so you have to be careful.

Yes mine too!! I found being on the medication I don't really get them as much anymore. But when I wasn't on anything they were really bad. I just was curious if anyone else had them because they were super scary and you hit it on the nail it's right when your not really quite asleep and then you jump up like your body jerks and your heart is pounding like crazy. it's good to know someone else can relate. As for the period thing I am going to check into that shot because it's really hard for me to do anything when my period comes I feel totally drained. Thank You for your help!

I am just wondering if anyone here has ever had this happen to them. Just shortly after you have drifted off to sleep you wake up with tachycardia and your body jolts or jerks really quick and you have that roller coster feeling your chest and stomach. It's a very scary feeling. Has anyone ever had this happen to them? Also I find myself closer to my period sleeping hours at a time. It's hard for me to do much of anything because I am so exhausted from doing little or nothing. Just doing the dishes can be a chore. I always feel drained out especially right before and during my period it get's really bad I can sleep 14 hours a day easily.

I am just wondering how many of you started to develop autonomic dysfunction after having a child. For me I had never been sick until after the birth of my second child. I was 21 when I gave birth to my daughter and from that point on I started having problems with dizziness and tachycardia among some other disturbing symptoms. I have read that woman who develop pots during childbirth or after childbirth their prognosis to get better is not very good But I am also wondering why woman can develop pots after childbirth what happens to our bodies that we are left with such an awful illness. Especially when your young and healthy before hand and never had any issues during pregnancy? I fear that I will be required to take this Effexor for the rest of my life. I don't want to be dependent upon it for that long. But I also know that without it I am doomed. Has anyone who developed pots during or after childbirth been able to go off all their medications and lead a normal life with little or no symptoms? It's been 10 years since the birth of my daughter and 3 times I have gotten off the Effexor only to have to go back on it because my symptoms return and are life altering to the point I cannot function.

Hey Simmy with special tests like catecholamines ect it's best to have them done with an endocrinologist and most regular GP's don't even think to run these types of tests to begin with. My internal medicine doctor had sent me for some xray's and blood work and requested a 5-hiaa test but she only requested a random urine screen which is not as accurate as the 24 hour. But when those came back fine I was of course still having symptoms and got my primary GP to refer me to an endo which ordered that same test but a 24 hour urine vs just a random. And she ordered a whole panel of other blood tests and compared them with the urine tests so it can be a bit tricky which is why they have specialists who understand these numbers and know what to look for and what to tests to run based on your symptoms if anything to rule things out that can cause certain symptoms . If you going for any specialized hormonal testing it's best to get them done with an endocrinologist. Because most regular doc's don't understand these special tests and what they actually mean.