Jump to content

new to tachy


halmad85
 Share

Recommended Posts

Hi everyone! I'm so glad to have found these boards because being sick all the time and getting nowhere with doctors has been getting hard on me. I could use the opinion of other who have these problems:

I've been experiencing alot of episodes of tachycardia 90-160bpm. It will usually occur when first get to work and I have to stand for long periods of time to set up medications (I'm an LPN). This wouldn't bother me, but I have alot of symptoms during this time...SOB, palpitations, dizziness, lightheadedness, nausea, heavy legs, generalized shakiness and weakness, chest pains (quick pains go as soon as the come), and just feeling like I could pass out, but I never do. I've also been having alot of pain eveywhere since this started. Usually sharp burning pains in my back, neck, sholders, thighs, and hips. Plus my right shoulder has been hurting to lift for the last 2 months (seeing a rheum for this).

I think the first time I had this type of symptom is when I took a medication for my bladder (I have interstial cystitis), Ditropan. After the second pill I could barely walk..so, I stopped it right away. The next med I tries that cause the same problems was Paxil, and then Celexa...both those sent me to the ER. My doctor started me on them for the shakiness and "panic attacks" while driving on the freeway. Then I continued to have the symptoms almost daily. Some days it is more severe than other days. I also have the symptoms during and after taking a shower, doing housework, just playing with my family, or just simply being on my feet for too long.

I saw my Cardio after the second ER visit. He did a holter and stress test. Stress test was normal, except I personally can say that when he had me running on the treadmill, my feet alomst gave out on me..it was horrible. The holter showed the I have tachycardia, up to 160bpm, and that my symptoms occur during the periods of tachy. Which I already knew. Then I mentioned the possibility of POTS and from there I've seen a Neuro, and another Cardio who said because my BP didn't fall upon standing I might not have that. Although I'm under the immpression that orthostatic hypo is a seperate issue, but can occur at times. The neuro didn't know anything about the disease.

The neuro did reccomend a Cardio that does the tilt table test. So, after getting the run around from my primary's nurse, I finally got an appt with him for the 15th of this month. So, I'm hopeful that he will have an idea of what I'm talking about.

Does it sound like POTS to you guys? It would be nice to know why I feel the way I do. Do POTS symptoms come and go...or would your pulse always be high after standing? Sometimes I feel ok, and my pulse is not to bad even after standing. Other times it is very clear that I have a problem and I feel like I should be in the hospital. I have been able to continue working, but I had to stop working overtime because it's just so hard on me to even be there as it is. It has been very hard on me because I seems nobody knows about this disease. When my cardio and my primary spoke to each other about it...my primary gave me a TB test because he thought they were talking about a lung problem POTTS. It just getting very frustating to see all these doctors and get nowhere.

Thanks so much if you made it to the end of this. I just haven't had anyone to talk to about these problems, so now you guys get to hear it all. Thanks so much. Any advice is welcome.

Jen

Link to comment
Share on other sites

I could have written this, and I have POTS. My blood pressure doesn't drop much either, my systolic drops a little, and my diatolic climbs a little. After a few minutes of standing with tachy, my pulse pressure gets very narrow. My EP doc said that was enough for a dx, and that some POTS people don't have any blood pressure issues at all. My understanding is the defining characteristic is elevated pulse upon standing or standing for a while (orthostatic tachycardia doesn't always go with orthostatic hypotension). My symptoms did come and go for years. Once I progressed to a certain point, though, they were always present until I was medicated.

My first episode of tachycardia at rest happened 30 minutes after taking a brand new antibiotic. For me, that was when my symptoms became more persistent. Lots of people with POTS have IC, also.

It is very hard to find "regular doctors" who have a good understanding of dysautonomia. If you post the area you are from, people on the board are very helpful and knowledgeable. Most likely someone can point you in the direction of a doctor with some experience.

Good luck on your TTT.

Carolyn

Link to comment
Share on other sites

Your symptoms sound very much like POTS. That is great that you will have a tilt table test as that should help greatly with appropriate diagnosis. BP does not necessarily go down with POTS (as I think you already know--sounds like you have done some research). POTS is defined by heartrate going up more than 30 bpm on standing. Have you tried increasing fluids or wearing support garments to see if that will help with your symptoms.

It is very typical of POTS symptoms to come and go. And that is also why a tilt test is not foolproof--you might hit a good day and get a false negative/still have POTS. So, the doctor should also rely on your symptoms in making a diagnosis.

Hope you get the care and relief you need soon.

Katherine

Link to comment
Share on other sites

Hi,

Are you my evil twin? :) . You described exactaly how I started down the road to my diagnosis of pots. I am an RN (my doc says nurses always get the odd disorders). Every test i had was normal except my tilt table which I failed miserabley. Add in a few ER visits for PSVT. (nothing like your co-workers looming around getting ready to code you).

If you are my evil twin, the rheumo will send you to neuro who will send you to cardio who will send you to endocrin who will send you to neuro who will send you to cardio who will send you back to your primary doc with a stack of papers and enough meds to kill you and an empty wallet from co pays and rx's. Then your primary doc will look at you and say "I dont know what to do with you" and send you to psych who will send you to neuro who will send you to cardio..........

The good part: I have been octeotide scanned, every inch MRI'd, CT'd, Ultra sound, xrayed, and every blood and urine test imaginable has been done. So i know I dont have cancer, no anyeurisms, no kidneydisease, no diabetes, no normal heart disease... Just POTS......

I hope you find a good doctor who wil listen to you, it may take some doing. Go to all your appointments armed with info on POTS. My only saving grace was a local pediatric cardiologist who is a colleague of Dr Grubb. (thank you Danell)!!

My advice, to start, get on the list of others in your area who have POTS and find out who they see in your area that has actually helped. And remember this forum can be a life saver.

Peace

Janine

Link to comment
Share on other sites

It's a misconception that blood pressure will drop with tachycardia if it's POTS. That's NOT the case. True POTS usually has NO drop in blood pressure or a very slight drop. If you develop the drops in Blood pressure it's called Neurally Mediated Hypotension (NMH) or Orthostatic Intolerance.

Be very Careful because there seem to be only a few doctor's in the world that really understand, know the difference and have pretty successful treatments!

I too work in the health care profession as a Health Unit Coordinator and I've spoke with dozens of doctor's about Dysautonomia and the different types there of and NONE of them knew the symptoms or anything about the different Dysautonomias.

Seek out an EPS specialist and when you have your appointment ask them if they are familiar with Dysautonomia, POTS, NMH, and if they've ever treated anyone with those diagnosis. Steer clear of having a pacer put in, very bad for POTS patients.

A tilt table would be helpful and Hopefully the Cardiologist knows how to interpret the results properally.

Be well informed and read as much as you can because in the end you will have to advocate for everything you get. Mighty Mouse has pinned a ton of information at the top of the forum/discussion page. You will find plenty of information to help.

Link to comment
Share on other sites

Here are some of my favorite weblinks that might be helpful to you, most of them taken from the pinned page

http://home.att.net/~potsweb/POTS.html

Free download "Handbook of Dysautonomia"

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

American Family Physician's Article on Orthostatic Hypotension

http://www.aafp.org/afp/20031215/2393.html

Overview of POTS

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

Symptoms

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

Oh forgot to mention - Showers, being out in the sun, hot tubbing, generally overheating, those are all things that make POTS symptoms worse.

Joint/Muscle pain are common complaints of Dysautonomia. After over 10 years of severe pain and several different medications, Dr. Grubb finally put me on Neurontin (often used for diabetics pain issues) and it has been a wonder drug for me personally.

You might also want to use the search button at the top of the page and search for past posts regarding your posting as many of the things you've mentioned have been talked about before.

Your definitely not alone! My mom is an RN and use to acutally pass out at work walking from patient room to patient room. They spent several years trying to diagnose her and kept telling her that they couldn't find anything wrong. After they finally diagnosed me they went back and diagnosed her with NMH & mild POTS.

Good luck

Steph

Link to comment
Share on other sites

Guest Belinda

I just have to add that my bp didn't drop dramatically when I was tilted until 10-15 min and it would fluctuate. The biggest thing that they saw was within 1 min. of the tilt my heart rate shot from 90-130bpm.

So it isn't all in the bp readings I believe my lowest bp on the tilt was 103/55 , I believe alot of it is fluctuation.

Keep your head up and welcome to the forum..like others said prior check around or ask about autonomic docs. in whatever area you are from maybe one of us could let oyu know of one near you!

Take care..Belinda

Link to comment
Share on other sites

Wow!! Thanks for all the replies. :) I went to work and felt horrible again. Then I come home and read all these understanding posts and I'm so relieved.

I didn't think that doctor knew what he was talking about with the B/P. I think if he knew anything about it he would have a least tryed to see what my pulse did after standing. He was starting to make me feel a little nuts for thinking I have POTS. So, thanks for the replies.

I also have noticed that sometimes I can have one symptom without the other. Is that uncommon? For example, I can have a pounding heartbeat and nothing else at one point, then I can have nausea later and might feel lightheaded, but no heart pounding. I think that's one thing that was throwing off that Cardio as well. He said my symptoms are too generalized. I can't pinpoint exactly when these symptoms happen and exactly how I feel because it's not always the same. I can say that if it's a more severe episode, then I'll have all the symptoms that I complain of at the same time. But, sometimes it's just some of them at a time.

How do I go to a board from where I live to talk to others near me? You guys mentioned that but I haven't had enough time on the boards yet and I'm not sure how to do it.

Another question. So far I've been given Toprol XL, Cardizem, and Florinef for the symptoms. The Toprol didn't help at 25mg, so my regular Cardio increased it to 50mg...then my pulse when down to 42 and my symptoms where horrible. Cardizem made me very tired, but I got through that to try to get it to work and nothing. At the most it calmed the palpitations, but nothing else. So, now I have a script for Florinef, but I haven't started it yet. I want to but I'm afraid that if I take it and end up getting the ttt in less than two weeks, it could mess up the results of the test and I won't get any answers. What do you think? Should I just wait to start until after the test, or am I nuts to hold on to it and suffer if I could be getting help now? I am trying to increase fluids and salt at least for now.

Thanks so much for the support. I really appreciate all the kind words and advice. I wish you all symptom free days.

Jen

Link to comment
Share on other sites

When I had my TTT the docs told me that it didn't matter what medications I was taking because if the medication is actually working and your HR doesn't increase on tilt then on the second tilt they administer isoproternol.

here is a link on tilt

http://www.heartsite.com/html/tilt_test.html

As for symptoms, they can come as one or a dozen at once or individually. You might not be doing anything or you might be doing something to aggravate them.

It would be extremely helpful if you go back and look as past posts as these things recur all the time :) and just know that you are normal.

Link to comment
Share on other sites

Guest Julia59

Hi Jenn,

I'm chiming in a bit late, but I wanted to wish you luck on your tilt table test, and I hope you can get the help you need to lesson your symptoms.

I had to laugh when I saw the POTTS diagnosis--------that happened to me a couple of times....

I started out the same way----however, I have had the heart racing spells for years, but that was about it until 2000, but in 1990 I had a spell of CFS type symptoms for about 6 months. Since 2000 I have not been the same----as you can see below on my signature line everything I have been diagnosed with.

Please let us know how you come out with your TTT-------Take Care,

Julie :0)

Link to comment
Share on other sites

Hi,

On the TTT within 3 minutes my heart rate went from 70 to 173. My BP didn't act up until late in the test.

Jacquie

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...