Newbie...really worried :(...

[Anthony]

First of, let me tell you a bit about myself....I am 18 Male and live in Canada. I've always been very active, and sports are basically my life (playing and watching), which is why this is hard for me. Well, let me get to when this all began...about a week and a half ago I started to feel pretty strong palpatations and fast beating heart rate...at first it just bugged me a bit, but I was constantly worried about it, which I think made it worse. It kept doing it over a span of 4 days, so finally I got really scared and told my dad about it...we went to Hostpital right away. When I got there they took my BP and HR....my BP was really high for my age (I am assuming it was because of the constant worrying about having a heart attack and dying) and my heart rate was 107, so they said they wanted to do some tests on me. They hooked me up to a heart monitor at first, and they said everything looked fine, and then they did a EKG (I believe it was) and the Doctor said it looked fine...at that point I was feeling better, and was starting to think it was just in my head and/or caused my stress of thinking about it too much. They told me they wanted me to wear a 24 hour Holter monitor to evaluate my heart over a longer period of time. So, when I got home I was feeling a bit better, but I was still worried about why my BP was up and stuff like that....anyways, the next day (I think it was) my eyes were focusing funny (and still are) and my legs felt heavy (they still do somewhat) I didn't think much of this at the time, but then I came across POTS while researching stuff I could have, and let me tell you...most of the symptoms you people describe are what I have been feeling for almost 2 weeks now. I then did my own little tests...I would take my hear rate while laying down (which was usually 68-80) and then i'd stand up and take it...it rapidly shot up really fast, and it does this mostly everytime I get up...I took it and it was at 108. I was so scared, and I still am...my legs still feel funny and my eyes are very sensitive to light, and I sort of get out of breath just going up my stairs. The one think I don't understand is why my BP was so high when I went to the ER....most of you have said that BP goes down when you have pots, so it doesn't make much sense. While I was in the hostipital the doctor took my BP again while lying down, and he said that he had went down a bit, so that made me feel better. Anyways, sorry to rant...but I am so scared...i'm afraid I am going to die and not my family every again, or I won't be able to live my normal life anymore, and not play sports. Oh, and by the way I did have the Holter monitor...they expect the results back in 2-3 days (I had it on, on wednesday...took it back thursday)....but again I am really scared, and I don't really know what to do. Any help/advice is greatly appreciated. Thanks

Edited November 13, 2004 by MightyMouse

[MightyMouse]

Anthony, welcome to the board. If it is POTS, that alone is unlikely to cause you to die -- it's mostly a nuissance and exhausting, but not fatal. Granted, if you do not do anything to help moderate your bp (stop from going too high or too low), then you're at the same risk of others with uncontrolled bp.

Like you, as a young person, I was a very active person. I was a distance runner into my early twenties. However, my symptoms did not come on suddenly as yours did--I've had symptoms since early childhood, likely since birth. Those who have a sudden onset appear to have a higher instance of spontaneous recovery over time, but it's impossible to predict for whom that will happen.

Also, like you, I have swings in bp, high and low. I can't say for certain that you fit the profile for POTS--that's for you and your physicians to work out--there is no substitute for the diagnostic work up and medical help. If you'd like to see what tests are typically done to rule in/rule out autonomic disorders, please see this section of the main DINET site.

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

There are several sources of very good inofrmation for you to read on autonomic disorders to that you can be more informed about the disorders, treatments, and the spectrum of outcomes.

See the following links:

Overview of POTS:

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

Symptoms:

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

Treatments:

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

Also, the NDRF (a separate non profit from DINET) has a handbook that you may download as free pdf files:

http://www.ndrf.org/NDRFHandbook.htm

Again, welcome. I hope that you begin to feel more at ease with what's going on with your body and find some answers about why you are feeling the way you do now.

Nina

[MightyMouse]

Oh, and I only edited the title of your post which had a typo in it--all the rest of your post is as you posted it.

[Anthony]

Thanks a lot. I read that there are 4 different categories upon getting ill....1. Had it all their lives, 2. After illness of Viral nature, 3. after giving birth, 4. trauma, bodily stressors (not sure what that is?), surgery. I don't think I fit into any of these, but I am not sure. It just started happening suddenly, and at first I didn't really notice that it was only doing it as I stood, but now it's REALLY noticable...when I stand up my heart rate shoots right up. Also, it seems like if I lay down my body temperature will be down a bit (feeling forehead, cheeks) and if I get up my temperature seems to go up. I am still pretty scared...also, unlike some of you...I am not getting dizzy really...but I do feel kind of "out of it" when I stand up and move around. My legs feel "heavy" when I walk too.

[geneva]

Anthony, welcome! I am sorry that you are going through a difficult time but I hope that you are sharing your concerns and fears with your parents. Having a son just a few years older than you, I know that can be hard to do but you don't want them thinking you are OK when you are feeling so scared.

POTS symptoms can be similar to other illnesses and as Mighty Mouse has said getting a good diagnosis, through tests, is the only way you and your doctors can rule in/out the list of potential illnesses. Unfortunately, that usually takes some time and the hard part is how to manage your fears in the meantime. Be sure to be 100% honest with your parents and your doctors and stand up for yourself as necessary when describing your symptoms. BTW, not all of us have low BP. Mine can be low, but with any stimulation -- flourescent lighting, noises, car travel etc -- it will jump quickly.

Hang in there while you go through the testing. I hope you begin feeling better soon and get answers to your questions. Good luck.

Geneva

[Anthony]

What are some of the other illnesses that could cause these symptoms that I am having? I realize you people aren't doctors, and it's best just to wait...but i'd like some ideas, since most of you have suffered from one illness or another for a large portion of your lives.

[MightyMouse]

There are many disorders that have overlapping symptoms--your doctors have to rule those out with your help. Adrenal and pitutitary issues can provoke similar issues, as can thyroid problems, nerve disorder that provoke tachycardia, etc. Too many to list here.

The definitive tests for POTS include a tilt table--as well as some relatively simple blood work.

Nina

[Anthony]

Thanks again. All I hope is they find out what is wrong (if anything), and it isn't life-threatening. I can't help but look up stuff on the internet, on the possible things I might have. I always worry about my health (even before this happen), but I usually just keep it to myself and worry about it in my head....which isn't good, but it's just how I am. My biggest fear is that I won't be able to live my life normally.

[MightyMouse]

I hope that they find something curable for you--or that it's something transient that just goes away on it's own. It's normal to wonder.

As for living with POTS, one must adjust one's expectation of what is "normal". Life after POTS appears is rarely normal again (sorry, I don 't mean to dash your hope), although some folks do eventually recover, they are a rarity.

Nina

almost 40...and living a pretty darned happy life despite having POTS since birth (probably due to EDS, a collagen disorder)

[MomtoGiuliana]

Anthony

I understand the fear you are experiencing--I know many of us do. First of all, I hope you are feeling reassured by now that it is not very likely that you have anything life-threatening or shortening, and if you do have POTS--there are a lot of things that can be tried--medicines, diet, etc.--to help improve symptoms. For many people with POTS, symptoms wax and wane, and can improve over time.

I had pregnancy-induced POTS, but I also think that I have a constitutional tendency towards it. I was very ill with it for awhile, but my daughter is now 2 and I am very well, and only on a small dose of beta blocker to help counteract some lingering symptoms. POTS does not affect my life greatly on a day-to-day basis. I do have to drink more fluids than the average person and I do not have great stamina, but I am not disabled.

What kind of doctor are you seeing? Generally, POTS is diagnosed and treated by an electrophysiologist or a neurologist.

Regarding blood pressure--some of us with POTS have chronically low blood pressure--others have tendency towards high. The latter happened to me right after my daughter was born. Now that I have gotten better, my blood pressure is back to being pretty low. I guess the good news there is (according to my specialist) POTS with high blood pressure can be easier to treat (e.g., POTS patients with low bp don't tolerate beta blockers well).

One more thing--anxiety is a common symptom of POTS. If this is what you end up being diagnosed with, it's helpful to realize that b/c (I know from experience) it helps to understand and deal with the fear and the panic you feel when you understand that it is a symptom--which is caused by inappropriate adrenaline release.

I would recommend getting a copy of *Spontaneous Healing* by Dr. Andrew Weil. It is a hopeful book about healing from disease, and has some breathing exercises in it that I found helpful--perhaps you will too--during periods of unease or anxiety.

Let us know how things go and if you have more questions.

Katherine

[Ernie]

Hi Anthony,

Welcome to the forum. I understand how you feel.

Where are you from in Canada?

I would strongly suggest you have a TTT to get the proper diagnosis.

Ernie

[Anthony]

Thanks for kind words Katherine. I really appreciate it. The only thing I am worried about is not being able to play sports and stuff like that, because of the increase in hear rate while standing. As for the Doctor I am going to...first I went the ER, and they gave me the Holter Monitor, and the results will be given to my family doctor. I am anxious to know the results to that, hopefully everything is ok. Ernie...I am in Ontario, in a small town named Lindsay....as for the TTT, I will see about that test and if I can take it after the results from Holter come back. Again thanks everyone for the support, and who knows....everything could work out alright, well I hope .

[Guest veryblue]

Hi there Anthony,

I can so relate to you in regards to the sports issue. I used to play soccer for the university of nebraska but I lost my scholarship due to POTS or whatever it is that I have. My sympotms came on a little bit faster than yours did. I was watching tv on night after school and playing basketball with my friends, and my heart just started beating 100 miles per hour! It was crazy. Of course the dos at the ER said anxiety but we all know thats not the case. I dont have a lot of time to talk right now, but I just wanted to add my story. I dont fit into any catagory either when it comes to contracting POTS...in I've never been diaginosed with it before and now we are actually looking into the possibility of a pitutary tumor causing my symptoms which I hope is true cuz it means and end to this misery. Feel free to email me, I would love to talk to a young athelete like myself. By the way I just turned 21! Oh and I wish to have my normal hectic life back everyday. Good luck.

Natalie

tashanator83@hotmail.com

[Anthony]

Thanks VeryBlue. What other symptoms do you have, if any? does your heart race when you stand?

[luckygoat3]

HI,

www.dynakids.org is for children and young adults with dysautonomia. you might want to check them out.

susie

[beala]

Anthony,

Do check out Dynakids my son is 17 and has pots. They have a forum for you to talk to other teens with autonomic dysfunctions .

Best of Luck to you- I know it can be scary

Drink plenty of water and increase your salt until you find out your tests results

[Anthony]

I don't see a forum in the DynaKids.Org website???

[Gena]

Anthony,

Welcome to the forum. I am interested to see how your holter monitor and TTT results come back. I had to go out of state (I live in FL) to a specialist in Birmingham, AL for a TTT. My TTT came back fairly normal, but my blood pressure and heart rate were high for me that day and stayed that way the whole time I was at the docs. (They usually run low and can jump pretty dramatically if I'm anxious or stressed. Going to a doctor or hospital always does that to me). I also went to Mayo clinic and had every test done in the world - my BP and heart rate were elevated the whole time there too.

My symptoms hit me out of the blue just a few months ago. Even though my TTT was fairly normal, the doc in Birmingham still dx'd me with POTs and mitral valve prolapse(slight) based on all of my symptoms. My BP is almost always quite low, I get tachycardia after eating big meals or sugar or have any type of major stress. I also have nocturnal tachycardia that can occur when I stand up and to go to the bathroom after sleeping for a few ours or sometimes after a nightmare. I do get mini panic attacks from time to time. My ears feel like they are stuffed sometimes, my temp gets out of whack (from one extreme to another) and I get dizzy sometimes. One thing to note, many POTS patients don't fall into a standard definition of symptoms, so it's good to rule everything else out first.

My symptoms were absolutely horrible at first, and I was not able to exercise b/c my heart would beat so fast. I was terrified of not getting my life back. Within a few short months I am now back to working out almost daily, and feeling much better. My heart rate still gets elevated more quickly than it used to when I exercise or do heavy lifting. I just learn to back off a little at let it calm down then resume at a slower pace. I still have many symptoms, but they are manageable. If you do have POTS, a book that is quite comforting and informative is The Mitral Valve Prolapse Syndrome/Dysautonomia Survival Guide Even if you don't have MVP, this book is sooo helpful for anyone with POTS or other type of dysautonomia. Also, I'm sure you've already learned that this forum is an awesome place to come for support and information. Good luck with your tests and keep us posted.

[Guest Mary from OH]

I know it's hard to be patient, but you have to wait for the results of your tests to come in. The important thing is that the drs are aware that you are having some sort of problem and will take the time to sort it out. That is the first step. YOU WILL NOT DIE!! Something like this could be dangerous if left undiagnosed. You are on the right track!! Stay strong. Don't get too far ahead of yourself!! When you get an actual dx, THEN start looking things up. Don't drive yourself nuts with what if's????

[Anthony]

Thanks for the comments. I am interested in seeing the results from the Holter Monitor also....today I discovered that it's kind of worse when I first wake up. When I woke up today, I could tell that my heart was beating pretty fast, and when I started to move, it went up. I am not sure what that means, but I guess i'll find out soon. I don't think I am going to die, nessacarily, but I am scared to move around a lot, because when I stand my heart rate goes up, so it's kind of stressful...cuz i'm always thinking about and always taking my pulse and stuff like that.

[luckygoat3]

go to the DYNA site and sign to be a member of DYNA and they will give you the info.

[Merrill]

Anthony, I've been reading your story and wanting to post .. but even now I only have time to write a few words. Please keep in mind that the heart is a very strong muscle, and it can beat quite fast for long periods ... no problem! (My own hr has been consistently over 100--sometimes over 150--for more than 30 years, and I've had all the tests and know my heart is in fine shape. Is's remarkable really, but I'm not afraid. That's the key; I just have pots, and I make accommodations for it, but it doesn't run my life by any measure.)

I strongly recommend that you STOP taking your pulse all the time ... knowing how fast it's going won't really do anything except increase your worry. If it's going over 200 bpm that's one thing, and it's highly likely that you'll know it! (you'll want to seek medical attention) ... I know that you're adjusting to all sorts of new feelings right now, both physical and emotional. That in itself is stressful ... and will increase your heart rate more. As best you can, I recommend that you try to focus your mind elsewhere, learn to meditate, read a good novel, try yoga. It's great that you're undergoing medical testing--that tilt table test is essential, so I hope you can get that soon--and you'll get some answers soon enough.

In the meantime, as others have said, you may feel better if you increase your sodium intake (through diet and/or salt tablets--as your pharmacist). Also, since you said your legs feel heavy, try buying a pair of compression socks at the drugstore and see if they help at all. Most Walgreens carry them, and they have styles for both men and women. (If it turns out you do have pots, you can order/buy them at much higher compression. But even the lower compression ones can help a lot!) And drink drink drink! (No liquor ... Water, gatorade, soup etc.)

I also hope you share this web site with your parents...they need to know what people are saying to you, and they need to know what your concerns and worries are!

take care,

merrill

[Jersey Girl]

If it is recommended that you will need a tilt table test, I would request that it be done by someone who has knowledge of autonomic nervous system disorders(autonomic testing laboratory at some major medical centers). My first one was misinterpreted and I was misdiagnosed with vasovagal syndrome by an electrophysioloigst in a local hospital (despite having a heart rate that increased over 30 beats per minute in an upright position). My halter monitor was read as normal despite having an unusually high number of PVC's. This same cardiology group also tried me on different beta blockers despite them being contraindicated for many with POTS. Needless to say I don't go to these docs anymore. My blood pressure was also extremely high initially 200/110 but now it fluctuates from 89/50 to 148/92, so yes it is hard to treat. It wasn't until I had other tilt table tests by autonomic specialists that I was diagnosed with POTS. So in my experience not all tilt table tests are equal.

By the way hello and welcome. Let us know how you progress. Extra fluids (64 ounces per day) has helped me, but doesn't relieve all my symptoms. I am also light and noise and temperature sensitive and can't seem to find much help for that although it has faded a little over time. I'm sure your doctors will want to run many tests to rule out other conditions. Take care. Martha

[MightyMouse]

Anthony, if I recall correctly, one of our other Canadian members had a tough time finding an autonomic specialist--but did finally get one who, I think, was in Montreal... Ernie is the one that I think saw him. So, if you need a TTT, that would be the most likely place to go--other than heading to the states.

Our Canadian list of doctors on DINET is pretty small--just 3 doctors:

CANADA

The following is a list of physicians who have an interest in varying types of autonomic disorders*. This list does not constitute endorsement. The Dysautonomia Information Network cannot guarantee health care satisfaction from any of the following providers.

Dr. Jean Cusson

Unite D'investigation Non-Invasive

Hospital Charles LeMoyne

3120 boul. Taschereau

Greenfield Park, Que. J4V 2H1

450-466-5000 x3106

POTS (Syndrome de tachycardie Posturale), NCS (Syncope Neurocardiogenique), PAF (Bradbury Eggleston)/Secondary Autonomic Failure, MSA (Shy Drager), Subacute Pandysautonomia

Autonomic Laboratory

Dr. Ronald Schondorf

Neurology

SMBD Jewish General Hospital

3755 chemin de la Cote Ste Catherine

Montreal, QC H3T 1E2

514-340-8222 ext.2399

Dr. Maxime Lamarre Cliche

Institut de Recherches Cliniques de Montreal

110, Avenue des Pins Quest

Montreal (Quebec) Canada H2W 1R7

514-987-5600

Autonomic Laboratory

POTS, NCS, PAF/Secondary Autonomic Failure, MSA

[Anthony]

Thanks for the support. It seems like my legs have felt a bit better in the past 2 days, so I guess that's good. My eyes are still pretty sensitive to a lot of light, which is kind of bothersome. My heart rate really goes up and down, if i'm laying on the couch with my feet up on the end of the couch, or if I sit for a good amount of time it, it can be pretty good (like 68-78 BPM)....but if I get up it jumps up pretty quick still, and right now it's kind of high (around 90), but I am not that worried about it. As for the Doctor in Montreal...I am pretty far away from there, but I guess if they can't do anything for me here...I may have to go there. I just have to wait for my Holter monitor tests results to get back.