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Please help-I have POTS


danelle
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Hi everyone, I just found this site and it is overwhelming. I never thought I would find anyone quite like myself. I am so emotional right now, reading everyone's stories and concerns.

I am a 37 year old RN who has been misdiagnosed for 18 years now. I was first diagnosed with MVP, then it was SVT, PAT, then we went to SA node dysfunction and inappropriate sinus tachy. I was sent to a MD in CHarleston for my IST and SA node problem, he dx me with POTS and said that an ablation would have been bad for me-very bad. I have an appt with Dr. Blair Grubb in Toledo, Ohio in July for more on this crazy POTS thing.

Here is a quick overview of the last 17-18 years of my life. It all started when I was 18-19. I married early-right after high school and had my first child 14 months later. The tachy started after this delivery. The cardiologist just told me it was nothing to be concerned with even though my heart rate would go from 48 at night to 190-200 during the day.?? 2 years later I got pregnant with my second child. I had daily episodes of not only tachycardia but also premature beats and very irregular stuff. I delivered him 6 weeks early. Things got somewhat better after he was born but then fired back up with my heart rate racing from 60-70 while sitting to 150 just walking to the living room!! This has been my usual for many years. I have been on atenolol now for 16 yrs. but I still have break though tachy and very irreg rhythms that make me feel like I'm going to die. I have virtually been able to do NOTHING as far as physical activity other than work parttime which literally gives me out. I am getting extrememely depressed with not being able to do anything, some days even just pick up the house. I am tired of living this way. I have started drinking tons of water and gatorade with salt added and lots of salt in my diet. I tried the compression hose but they didn't seem to help. I am tired of my husband being my "security blanket". It has gotten to where I won't even go to the store without him in fear of an attack. I live with constant fear and panic of this crazy thing. I am not even sure they got the diagnosis right this time. But I have done some research and I sound very classic.

Does anyone get very weak, shaky, sweaty with this even if their blood sugar and BP are ok? IT's like I have no bones in my body. I tried a very slow monitored exercise program here at the cardiologist office but couldn't do it. It wore me literally out. I only weigh 120 but have no muscle tone what so ever. My symptoms have gotten much worse over the last year.

I could go on and on but won't take up everyone's time, I just feel so scared that I'm gonna die from the arrythmias and feel so alone because noone understands. The doctors here-cardiologist and neurologist- have never heard of POTS which doesn't help. I went to the ER the other day and that was a joke.

DOes anyone know about Dr. Grubb, what I can do to make this better, what causes it, any kind of support would be wonderful. My husband's support is growing thin and it is causing problems for us. I did check out POTS place but I need more info.

I feel like I am an old lady and I AM a prisoner to this thing. PLEASE HELP!! I AM DESPERATE FOR HELP!!!

Thanks SOOOOOO much to anyone who will listen and I wish you all luck for the future.

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Hi,

Sorry you have dysautonomia but I am glad that you found us. Your symptoms are very similar to mine.

I went to see Dr Grubb and he is a wonderful doctor. Very busy but he was the first to prescribe a medication that worked. I have not gone to see him again because I have to pay out of pocket money and I can't afford it right now. But he is really competent and has good bedside manners.

Getting a diagnosis and proper med is a long route for many of us but our quality of life usually improves over time. There are ups and downs and we learn to cope with it.

I am learning to make a new life and I trust that you will be able to also.

Take care

Ernie

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I'm glad that you found us...but sorry that you're here because you have POTS. Hopefully you'll get lots of help from the people here.

Yes, I am also a patient doctor Grubb. Many of us here have seen him over the years. Your misdiagnosis for that long period is, unfortunately, quite common. I've been symptomatic all my life, but didn't get a diagnosis until I was in my 30's.

And, yes, that shakey feeling is normal with POTS. My best suggestion to you is to read up on dysautonomias from the following reputable sources:

Overview of POTS and autnomic disorders:

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

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

http://www.ninds.nih.gov/health_and_medica...dysauto_doc.htm

Info on the why and how questions:

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

http://www.dinet.org/what_are_the_mechanis...sms_of_POTS.htm

And a free pdf book download from NDRF on dysautonomias:

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

The NDRF handbook has an easy to follow format and goes over many treatment options. Also, you can look here on DINET for treatment info:

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

Wow, I just realized I gave you a TON of reading to do! Seriously though, I think you'll find the info incredibly useful.

Also, I'm VERY glad you didn't end up getting the sinus-node ablation. That could have made things VERY bad for you. I don't know any POTS patients who've done "great" or gotten better after ablation. Not that it's impossible...I've just not met or spoken with anyone who's had a great outcome after ablation. With POTS, the Tachycardia seems to be a functional reaction to the loss of blood pressure and flow to the brain and heart and lungs--so if the pressure is too low in the pipes, the heart pumps faster to keep all your vital organs oxygenated (since you're an RN, I'm sure that makes sense to you now, especially since you've gotten the correct diagnosis...) Anyway, the ablation would have removed the ability for your heart to kick it up a notch and you'd likely have developed many more symptoms, like full out fainting/syncope.

Again, welcome! Nina

Edited by MightyMouse
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Dear Danelle,

I am so sorry that you are very scared. From what you have stated, it does sound like you have POTS but Dr. Grubb will be able to determine that within 2 minutes of meeting you. Dr. Blair Grubb is the best!!! I can't say enough about this man.

Let me give you a little of my history. Approx. 4 years ago, I went to my state fair feeling perfectly normal. I took my little sister on the teacup ride, the one that spins you around and around, and that is when all of my problems started. I got off the teacups feeling extremely dizzy,hot, and dehydrated. I went to the nearest concession stand and bought 2 bottled waters and chugged them. I felt a little better but still "off". I went home, and for some reason, could not get cooled off. It had only been 80 degrees out that day so you can imagine what everyone around me was thinking. Two days later...I was rushed to the Emergency Room due to slurred speech, passing out, Tachycardia, and severe chest pain. Danelle...I couldn't even stand up!

After being diagnosed with Low Blood Sugar, Vasodepressor Syncope, Low Blood Pressure, and Heart Disease, I was scared out of my mind. I was referred to a cardiologist here in town and after working with me for about 6 months, he gave up. He said that my heart was going into Cardiac Failure and that I would need to have a Heart Transplant. He sent me to a Heart Surgeon. The Heart Surgeon said that he wanted to check another avenue first so this is when I was referred to Dr. Grubb.

Dr. Grubb diagnosed me with POTS and explained that with the lack of knowledge regarding POTS, this is pretty typical. I did not need a Heart Transplant! And since my visit with Dr. Grubb, I was able to go from passing out approx. 12 times per day to not passing out at all for a year and a half.

I am currently in a critical POTS situation now but knowing that I have an appointment with Dr. Grubb April 28th, I feel confident that I will be feeling better soon. Piece of advice for if you are diagnosed with POTS, please make sure when you are in your appointment with Dr. Grubb, to ask him if he can send information on POTS to all of your current Doctor's. Not only will this assist you when Dr. Grubb is not available but it will also help to increase awareness.

Please let us know if you need anything! Our thoughts and prayers are with you .

Susan

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Hey, Nina (MM), I shouldn't have said "always" <_< (and you know what I mean :angry: )

I'm one of those with tachycardia without deep dips to the low blood pressure zone! There are POTS people without major bp fluctuations... I think for me, the orthostatic intolerance is from an autonomic nervous system problem that keeps my veins from properly constricting in my legs. That action (or rather, inaction) leads to pooling which results in the tach to keep the blood flowing to my brain etc. I guess that's why the compression socks feel so mandatory right now!

The compliment still stands, however; that was great info and a great set of URLs to pass along.

peace,

m

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danelle,

It's so hard I know exactly what you are going through. I also am a pots patient. I am 25 and going through all the same changes and symptoms as you. It is very hard for us to be isolated in our homes. I feel like since I am home that it's my duty to keep the chores up but I just don't have it in me. That alone is depressing. I know what you mean about your husband. I often tell my husband "You didn't sign up for this" his answer is "neither did you". This is a great place to find support, vent and gain information. Although somedays it's hard to even make it to the computer. I told my husband about this forum and when he got on here he cried and the amount of support there is. Maybe you should advise your husband to take a look at all of the wonderful resposes you have recieved. Here are a few inspiring things other group members told me when I entered and I'll never forget them.

1. Pots is not life threating but it is life altering

2. Learn new ways to live with your new body - know your limits

Please lean on us for anything.

Mindy

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Guest tearose

Hi Danelle and welcome home! Your story is so familiar, you are already part of the family. Absorbing the many aspects of pots can be a lot to handle and when the reading of formal information is too much, turn to the archives on this forum for smaller bits of help. One of my favorite things to do when I need inspiration and can't manage to write or do serious reading is to scroll through the texts here while sipping my favorite beverage. Many of the symptoms you describe I and many others live with too. You will find support here because we are struggling with the same issues as you even though we may have known about our dx and you just got the dx. The knowledgable, kindly doctors of dysautonomia are a small few. I haven't been to Grubb but many here have and they usually are very satisfied with the treatment plan he suggests. While you have the time between now and July, prepare to see him by learning as much as you can and coming up with your list of questions. Specialists like Grubb will not usually have the time to see patients more than once a year and it will be up to you to help teach your local internist how she/he can manage your care in-between times. Trust me, better days are just around the bend! Be well, tearose

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Welcome! As good as it is to have you I'm sorry that POTS found it's way to you!

The only thing I can think of is POTS REALLY *****! But we are here for you to answer questions, lend advice, listen to you vent & numerous other things that you'll need to get out of your head!

The best thing about this forum is that when one of us (or more) is down the others are quick to help pick us back up again!

Anytime you see a new Dr make sure to write a list of symptoms to take with you. You get a little caught up with the forms and talking about your family hystory and then you end up leaving thinking "I wish I had told them about___________"

Good Luck!

Deanna

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Thanks SO much to all of you who have so kindly responded to me today. You will never know how much it means. I guess I'm not all alone after all.

Ernie-Thanks for the info on Dr. Grubb, wish I could get in to see him sooner.

Nina-MM- Thanks for all the sites full of info. I will research them all!

Shayden-How does Dr. Grubb make a dx so fast??Thank God you found him-heart transplant- good grief that is a scary misdiagnosis!!!If you don't mind my asking, what is your critical POTS situation? (I ask only because I feel that way myself)

Merrill-what compression measurement do you have on your hose. I tried the 30-4o and they were way too tight, didn't stop the tachy and I was afraid as tight as thery were that I was gonna throw a clot!!

Mindy- your info was so touching. I will ALWAYS remember what you passed along. My husband is another story. It's a long one. Sometimes supportive, sometimes not. We've been married for 20 yrs. He doesn't show much interest in learning about my problem. More later>>>

Tearose-Odly, I do feel at home here and what a blessing it is!! I will do as much research as I can before July. I want to know as much as I can before I go to see Grubb and I pray he can make my life more manageable and give me a better quality than I have now-It could be worse though so I feel bad for complaining sometimes!

Deanna-I definately agree-POTS *****!!!!I will remember my list to take with me-however-sometimes the drs don't listen anyway.

Once again, I can't express enough how much this has meant to me. I feel like I have just found a new extended family. If there is anyone I can lend an ear to please let me know, I'm sure I will need one again very soon. My thoughts and prayers are with all of you-my new POTS family!!!!!

Keep the replies coming!

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Danelle,

Oh, I totally understand your anxiety. I think the anxiety is often worse than the POTS for me. I don't have many answers for you, but remember this: Even if you feel like you are about to drop dead from your heart racing, you haven't yet. Think about how many times you thought, "This is it." And you still woke up the next day, right? That's the only thing that keeps me going. I have felt like I'm having a heart attack about 50 times in the last few months. Of course, going to the doctor and verifying that I haven't is helpful, but the more I feel like this and continue to live, the more I realize POTS must not be life-threatening. And there are people on this site who have had it for many years like yourself and still keep on ticking.

I know most people will probably be critical of me for suggesting this, but you really may need to try an anti-anxiety med (I take a very small dose of clonazepam as needed). Anxiety, over time, is really tough on your heart and your nervous system. I personally believe it is linked to me developing POTS after I had my daughter last year, because I think I have an overcompensatory sympathetic nervous system, and the few days after giving birth left me sleepless and jittery. I must also remind you, though, I am not a doctor; you should really seek counseling or some sort of support for the emotional side of your illness. I also have found meditation and yoga to be very helpful for the acute anxiety, as well as a very healthy diet and forcing myself to get exercise -- even a 10-minute walk outside.

Best of luck to you. Sounds like Dr. Grubb is THE doc to see if you have POTS. Keep us posted.

Amy

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Danelle, I also wear 30-40 compression hose that I got from a company online. They're VERY tight. I think they help <_< not sure how much, but on a really bad day, I think they make it possible for me to go to work. If you've got POTS, 30-40 is NOT too tight. That's what every POTS specialist I've been to has prescribed for me over the years (Dr. Dahl, my original Neuro who sent me to Columbia Presby. in NY--I think she's now with Dr. Nadelson at UMDNJ in Newark NJ, Dr. Bigger at Columbia, Dr. Grubb at MCO, Dr. Goodkin at Crozer-Chester Hosp and Dr. Gutkin or the Renal & Hypertension Group in Northern NJ).

Dr. Grubb confirmed by Dx in about the first half hour of the more than 3 hour visit. He did a "poor man's tilt test" too, where he had me lie down for a bit, then stand and take my bp/hr at various intervals. I didn't really need the confirmation--I was already sure--but it at least was validating. I really just went there because my medication regimen needed tweaking and I was having major GI problems including gastroparesis.

Again, welcome to our board and I'm glad that you're getting so many useful replies to your post. :angry: Nina

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Hi Danelle -- just a quick reply to your question. Even though I've had POTS forever, I only recently found out what was going on for me. My symptoms have been much worse in the last year, and I finally decided to get some answers. I could have written a few of your sentences in describing my tachycardia--sitting, it's as low as 105-110; walking down the hall at work, it's upwards of 150. I've always been heat intolerant and I've NEVER been able to exercise at all. I was always super skinny even though my diet was good. I finally gained weight a few years ago when I was less symptomatic; but then inexplicably lost 15 lbs in last year as heart raced and symptoms worsened. (I mention all this, I guess, because you spoke of your weight...)

Gee, this isn't a quick reply to your question, is it? <_<

Two things I want to say, I guess. 1) I too suffer from anxiety--but now that I understand that my body's overreaction to any stress (including the fantasy of stress--that something bad will happen to one I love, a car crash, a plane going down etc) is about the POTS, I can say, Hello, tachycardia, you're just trying to scare me even more! Now cut that out! But we're all different, and I agree that an antianxiety med--starting low dose so you can see how you do--is something you should think about and talk with your husband and/or doctor about.

As for the compression hose (never thought I'd get to it, didja?) -- people will be shocked to hear that I wear 20-30 compression. I know the articles say 30-40... but my prescribing doctor told me they were extremely tight and that I might not like them or wear them. We decided I would start with 20-30 and see how or whether they helped. I don't know that they help with the tach; they might, but I made other changes simultaneously (salt, water, electrolytes, etc) so I'll never know what part of the results I'm getting are sock-based.

I will say, though, that I LOVE this weight, and it's working out for now. If I get up during the night without them on, I swear I can feel the blood pooling in my legs. I put them on before getting out of bed in the morning and take them off in bed before going to sleep. I'm that attached. They just make my legs feel less heavy and more energetic. And these are very good things!

Maybe try the lighter compression if the 30-40s were not comfortable. (And if you didn't know, they're covered by insurance under durable goods, so get a prescription from your doc if you've got insurance.) I bought mine at a medical supply store--if you're 5'7" or taller, I recommend the Mediven brand. (Jobst were too short for me.)

best of luck to you,

m

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Hi Danelle,

How does Dr. Grubb diagnose so fast, you ask. No idea but he is world renowned in the POTS field. He is also going to receive the reports from the Doctor's that you are currently working with which he reviews before your appointment time. Make sure that you have all the Doctor's you have ever seen in regards to this sent to him asap. This is going to make your initial appointment go much smoother.

The critical situation I am in now is quite scary. Approx. 2 weeks ago I was sitting at my desk at work when I had the most horrifying chest pain and I slumped over and fell on to the floor. My co-workers tell me that I turned blue, my heart was racing, I was sweating and a lot of other symptoms. I do not remember anything but the pain in my chest. I was rushed to the hospital in an ambulance and when they heard I had POTS (which I seriously doubt they had a clue what this was) I was sent home to follow-up with Dr. Grubb. (Who I can't get in to see until the end of this month.)

The following day, I fainted 7 times, and then 5 the next and I am holding at about 3 times per day. A few days later, I followed up with my general care practioner who explained to me that whatever happened (he also did not have a clue) caused a "substantial heart Murmur" and was sent to a local cardiologist (who again has no knowledge of POTS). Anyways....I they are performing a Stress Test and Echocardiagram tomorrow and that should let me know what is going on.

I would like to hear what your current situation is in more detail. If you need anything or just someone to talk to, please feel free to email me at scantan@columbus.rr.com.

Please take care!

Susan

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Danelle,

Hi, I too was scared to death when I was trying to find out what was happening to me. Finding this site has brought such calmness to my life. Now, about your husband, try to slowly lead him to this site, i'm sure he is scared also, you are his wife and he is fearful for you, if he shows resistance to learning then try other support people.....family, friends, children. Finding that certain someone that can learn about this illness with you that can share in the knowledge of all your symptons and be just a phone call away can be so calming. Send this website to friends and family that may be interested. It really does make a difference. Also being in this forum and knowing you aren't alone, being able to vent and be lifted up is also a great "security blanket". Welcome to this site, it really is a godsend.

Paige

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Thanks to ALL of you once again! I will probably try the 20-30 hose out first and get used to them before I go back to the 30-40's. About the anxiety and panic attacks, I have been on clonazepam for several years now. Sometimes it helps and sometimes it doesn't. On my really bad days, it just barely takes the edge off of the panic-that's when i load up on it too! Even though I have had Tachy and wild symptomatic arrythymias for 17+ years, most of the time when the bad ones hit me I get panicky-just like it was the first time all over again-URGH!! SOme days I can deal with it better than others. Thanks for all your help, suggestions, but most of all your support. Talk to you all again very soon!! Danelle

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Danelle, I just saw another cardiologist (who specializes in pregnancy--even tho I'm not preggers yet). I told her I was wearing 20-30 knee socks and she told me to wear thigh highs or more preferably, to the waist. She was pretty emphatic about it... (She doesn't like the tightness of the knee socks just below the knee and mentioned the concern you did in your earlier post: blood clots! Shoot! Anyway, I have one pair of thigh highs and they're nice--but gotta go buy more and some to the waist. I think she thought 30-40 was better, but hey, if I'm getting results with 20-30 and I'm willing and able to wear em, I'll keep going that route for now. So good luck with your 20-30s, and try the thigh high ones! (She also wanted me to start doing a little more walking with em on...)

As for the anxiety, remember that an exaggerated response that sets off adrenaline rush is part of this set of symptoms we must deal with ... it's the pots, and if medication helps with that piece, then so be it!

Be well,

m

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