Diagnosed with SVT and want to talk with others

Posted by jennybell1 @jennybell1, Jan 24, 2016

I was just diagnosed with SVT and can't seem to find any discussions with regards to that diagnosis. It was suggested by my cardiologist to visit this site for information. Anyone able to help point me in the right direction as the search engine comes up with "no results".
TIA

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

HI, I had SVT, Atrial Flutter and Atrial Fibrillation. I have had 4 ablations over the years and 4 years ago I had my 5th and final ablation- it was a pulmonary vein ablation and it fixed all three rhythm problems. If you have any specific questions I would be happy to try and answer them. Good luck!

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<p>Ive been diagnosed with SVT taking now....Diltiazem 120mgSr 24hr Cap Par and Metoprolol Succ 100mg ER 24hr Tab. I also take Klonopin 1mg 3×a day for seizures, Levothyroxine 88mg Tab Mylan my thyroid doesn't work, Potassium EXT REL 10MEQ Tab 2×aday, Folic Acid 1mg, Laysix 80mg. Ive been on my seizure medicine for 20 years. The heart, laysix, potassium in last 2 years. ...after a severe trauma and physical attack from head to toe. I had to take a lot of steroids for around 8 to 9 months to take out swelling then it left me with swelling in a lot of fluid. They believe the heart triggered by the amount of fluid that is still in me about 25 pounds of fluid in my cells. I'm writing because I feel extremely tired sleepy all the time. I have complained to all my doctors about how sleepy and tired no energy that I am....I'm hoping to please get help me with some answers</p>

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@marilyn734

<p>Ive been diagnosed with SVT taking now....Diltiazem 120mgSr 24hr Cap Par and Metoprolol Succ 100mg ER 24hr Tab. I also take Klonopin 1mg 3×a day for seizures, Levothyroxine 88mg Tab Mylan my thyroid doesn't work, Potassium EXT REL 10MEQ Tab 2×aday, Folic Acid 1mg, Laysix 80mg. Ive been on my seizure medicine for 20 years. The heart, laysix, potassium in last 2 years. ...after a severe trauma and physical attack from head to toe. I had to take a lot of steroids for around 8 to 9 months to take out swelling then it left me with swelling in a lot of fluid. They believe the heart triggered by the amount of fluid that is still in me about 25 pounds of fluid in my cells. I'm writing because I feel extremely tired sleepy all the time. I have complained to all my doctors about how sleepy and tired no energy that I am....I'm hoping to please get help me with some answers</p>

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Hi @marilyn734, welcome to Mayo Clinic Connect. I'm sorry to hear about what you're going through - I know it must be frustrating to have questions about your prescriptions and the way they affect you. I'd recommend that you check out the thread I've linked to below - there's some great discussion going on about managing supraventricular tachycardia and you can connect with people like @martishka, @topaz and @gonefishinmt , who are going through the same thing. It's helps to know you're not alone!

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@marilyn734

<p>Ive been diagnosed with SVT taking now....Diltiazem 120mgSr 24hr Cap Par and Metoprolol Succ 100mg ER 24hr Tab. I also take Klonopin 1mg 3×a day for seizures, Levothyroxine 88mg Tab Mylan my thyroid doesn't work, Potassium EXT REL 10MEQ Tab 2×aday, Folic Acid 1mg, Laysix 80mg. Ive been on my seizure medicine for 20 years. The heart, laysix, potassium in last 2 years. ...after a severe trauma and physical attack from head to toe. I had to take a lot of steroids for around 8 to 9 months to take out swelling then it left me with swelling in a lot of fluid. They believe the heart triggered by the amount of fluid that is still in me about 25 pounds of fluid in my cells. I'm writing because I feel extremely tired sleepy all the time. I have complained to all my doctors about how sleepy and tired no energy that I am....I'm hoping to please get help me with some answers</p>

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Thank you @rebeccamroberts, I've read some one the link. Its very helpful. I really appreciate you replying to my question. Yes, its very frustrating to deal with all these health problems. I get so tired of taking all my medicine sometimes. Thank you for tagging in the others for help. Finally, it feels like theirs others that understand. I also have changed everything with what I eat and drink. ....because of the fluid in my whole body (cells).

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@marilyn734

<p>Ive been diagnosed with SVT taking now....Diltiazem 120mgSr 24hr Cap Par and Metoprolol Succ 100mg ER 24hr Tab. I also take Klonopin 1mg 3×a day for seizures, Levothyroxine 88mg Tab Mylan my thyroid doesn't work, Potassium EXT REL 10MEQ Tab 2×aday, Folic Acid 1mg, Laysix 80mg. Ive been on my seizure medicine for 20 years. The heart, laysix, potassium in last 2 years. ...after a severe trauma and physical attack from head to toe. I had to take a lot of steroids for around 8 to 9 months to take out swelling then it left me with swelling in a lot of fluid. They believe the heart triggered by the amount of fluid that is still in me about 25 pounds of fluid in my cells. I'm writing because I feel extremely tired sleepy all the time. I have complained to all my doctors about how sleepy and tired no energy that I am....I'm hoping to please get help me with some answers</p>

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Hi @marilyn734:
Welcome to the discussion. You have issues and meds and a story that are unique to you - just like most of us do. But naturally, you want to know if any of ours might be of some interest or help to you. Only you can say whether any of our ramblings are of any help. We hope so, but everyone has such a different combination of things they are dealing with, that really all we can do is tell you a bit of our experiences and trust there may be something there that you can use.

Well, that was my welcome. You say you are sleepy most of the time and have no energy. I see you are taking Diltiazem, Klonapin and Metoprolol daily. I can tell you from experience that that combination would and did make me sleepy as well. I'm curious why you would take both Diltiazem and Metoprolol - are they both for blood pressure or perhaps the Metoprolol is for headaches? In high enough doses, any beta blocker like Metoprolol will make a person somewhat sleepy. Taken with Klonapin will certainly make most people tired and without energy. I currently take Diltiazem for high blood pressure control and also to help control SVT incidents. I take Mirapex not for seizures but for severe restless leg syndrome. I also take Gabapentin for nerve pain. Throw in daily doses of oxycodone and you have a recipe for some real sleepy, dopy days if not balanced correctly.

That's the real key - these meds/doses need to be balanced so you can have a reasonable life. It seems to me that you need one of your docs to take control of getting your meds balanced. If you have a PCP - primary care physician that can and will do this it would be a real blessing for you. You've been taking Klonapin for a long time - is it still effective in preventing seizures? You might want to talk to your doc about some of the newer meds for that purpose and how they might fit with your other meds. If you don't already have a PCP, find one that you click with - that you can easily communicate with and that will listen to you. They are out there.

I'm fortunate to have good docs that are willing to communicate not only with me but with each other in getting my meds right. For example, last week my dermatologist wanted to double the dose of Colchicine, which is a gout med but which I am currently taking in combination with Plaquenil for Lividoid Vasculopathy. The pharmacist flagged the Rx because he knew I was also taking Diltiazem which in comb with Colchicine in higher doses can be toxic. So my Derm doc called my Heart Doc and they decided on a course of action acceptable to all.

My meds are balanced now about as well as can be expected. I still get a bit sleepy at times if I deviate too far from the med schedule, but my wife is very diligent about checking on me, which really helps. I'm now retied so its somewhat easier for me than when I was still working. I'm sure you can relate to that.

Well, good luck and stay in touch with the group.

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@marilyn734

<p>Ive been diagnosed with SVT taking now....Diltiazem 120mgSr 24hr Cap Par and Metoprolol Succ 100mg ER 24hr Tab. I also take Klonopin 1mg 3×a day for seizures, Levothyroxine 88mg Tab Mylan my thyroid doesn't work, Potassium EXT REL 10MEQ Tab 2×aday, Folic Acid 1mg, Laysix 80mg. Ive been on my seizure medicine for 20 years. The heart, laysix, potassium in last 2 years. ...after a severe trauma and physical attack from head to toe. I had to take a lot of steroids for around 8 to 9 months to take out swelling then it left me with swelling in a lot of fluid. They believe the heart triggered by the amount of fluid that is still in me about 25 pounds of fluid in my cells. I'm writing because I feel extremely tired sleepy all the time. I have complained to all my doctors about how sleepy and tired no energy that I am....I'm hoping to please get help me with some answers</p>

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Hi @marilyn734,
It sounds like you are dealing with a lot of issues, some of which I have no experience with. However, I also had SVT as well as Atrial Fib and Atrial flutter. I know how difficult the drugs can be and in the past was able to resolve that once I was under the care of an electrophysiologist. I have an excellent family doctor but the meds that I was on for my heart needed be managed by a doctor that was more familiar with them. I found that inderal and other beta blockers made me very tired as well so I had to work hard to overcome that. I was working full time, raising two kids and juggling schedules so I could get to the gym. I am no longer on heart meds , I had a pulmonary vein ablation for the SVT and AF and it was successful. Prior to that I was visiting emergency several times a month with rates of over 200 sometimes as high as 220. I am wondering if you have a clinic within your hospital that deals with heart rhythm problems. If so, that would be a good resource. We have one here and the nurses who work there are highly trained in heart rhythm disorders. My full medical history is available to them and they had a pharmacist whose specialty were heart meds. They provided counselling and medical advice during the time that I was symptomatic as well as post ablation when I was coming off all my heart meds. If there are some meds that you can do without perhaps that would be a start. It sounds like quite a large amount. I wish you luck and hope some of this was of use to you.
Take care,
Martishka

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@marilyn734

<p>Ive been diagnosed with SVT taking now....Diltiazem 120mgSr 24hr Cap Par and Metoprolol Succ 100mg ER 24hr Tab. I also take Klonopin 1mg 3×a day for seizures, Levothyroxine 88mg Tab Mylan my thyroid doesn't work, Potassium EXT REL 10MEQ Tab 2×aday, Folic Acid 1mg, Laysix 80mg. Ive been on my seizure medicine for 20 years. The heart, laysix, potassium in last 2 years. ...after a severe trauma and physical attack from head to toe. I had to take a lot of steroids for around 8 to 9 months to take out swelling then it left me with swelling in a lot of fluid. They believe the heart triggered by the amount of fluid that is still in me about 25 pounds of fluid in my cells. I'm writing because I feel extremely tired sleepy all the time. I have complained to all my doctors about how sleepy and tired no energy that I am....I'm hoping to please get help me with some answers</p>

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Hi @marilyn734. How are you feeling? I checked in with one of Mayo Clinic's pharmacists about your initial post and how tired you're feeling with all of the medication you're on. I've included her full response below - hopefully it's helpful!

"It is possible that heart medications can make a person very tired. In a situation where the body has been through a trauma and the heart is under added pressure with additional fluid, that can also cause the body to be fatigued. It is important to continue to work with the doctors and keep them updated with how you are feeling. They may try to adjust doses on the medications to see if that will help, but they may also look for physical reasons why your body may tired"

Marilyn, I know you mentioned that you've told your doctors how you're feeling. Have you tried talking to them about adjusting the dosage or exploring other reasons that you're feeling exhausted?

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@marilyn734

<p>Ive been diagnosed with SVT taking now....Diltiazem 120mgSr 24hr Cap Par and Metoprolol Succ 100mg ER 24hr Tab. I also take Klonopin 1mg 3×a day for seizures, Levothyroxine 88mg Tab Mylan my thyroid doesn't work, Potassium EXT REL 10MEQ Tab 2×aday, Folic Acid 1mg, Laysix 80mg. Ive been on my seizure medicine for 20 years. The heart, laysix, potassium in last 2 years. ...after a severe trauma and physical attack from head to toe. I had to take a lot of steroids for around 8 to 9 months to take out swelling then it left me with swelling in a lot of fluid. They believe the heart triggered by the amount of fluid that is still in me about 25 pounds of fluid in my cells. I'm writing because I feel extremely tired sleepy all the time. I have complained to all my doctors about how sleepy and tired no energy that I am....I'm hoping to please get help me with some answers</p>

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I have had three ablations and a pacemaker for "sick sinus rhythm"; tachycardia. This has been going on for almost 20 years now with the unresolved problems. The shortness of breath has gotten so bad that I can't even stand still and fold clothing without becoming short of breath. I've recently had a chemical stress test. I was told that my TID ratio was high and they would possibly implant a stent. Went to the cath lab yesterday and was told they found nothing. I'm scheduled for a pacemaker replacement next week (it's been over 5 years since original). Does anyone know what the significance is for this TID? I just want to be able to be somewhat active again. It seems the docs are just not interested in finding what the problem is. I'm new the Winston-Salem NC area; if anyone knows of a good cardiologist, please let me know.

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@marilyn734

<p>Ive been diagnosed with SVT taking now....Diltiazem 120mgSr 24hr Cap Par and Metoprolol Succ 100mg ER 24hr Tab. I also take Klonopin 1mg 3×a day for seizures, Levothyroxine 88mg Tab Mylan my thyroid doesn't work, Potassium EXT REL 10MEQ Tab 2×aday, Folic Acid 1mg, Laysix 80mg. Ive been on my seizure medicine for 20 years. The heart, laysix, potassium in last 2 years. ...after a severe trauma and physical attack from head to toe. I had to take a lot of steroids for around 8 to 9 months to take out swelling then it left me with swelling in a lot of fluid. They believe the heart triggered by the amount of fluid that is still in me about 25 pounds of fluid in my cells. I'm writing because I feel extremely tired sleepy all the time. I have complained to all my doctors about how sleepy and tired no energy that I am....I'm hoping to please get help me with some answers</p>

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Hi @sotiredofit, welcome to Connect.
I moved your message here so you can meet others who are talking about managing tachycardia.

@martishka @gonefishinmt @marilyn734 any thoughts to share with @sotiredofit about this significance of a high TID ratio and shortness of breath issues?

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@colleenyoung

Hi @jennybell1,
Welcome to Connect. There's an older discussion about tachycardia treatment here: https://connect.mayoclinic.org/discussion/flecainide-and-digoxin-drug-for-tachycardia/ If you post on the thread, you may be able to re-ignite the conversation with @laurenstedman, @topaz and @useless.

You may also be interested in connecting with @iboxx @lindabg52 and @alabamagma on this thread: https://connect.mayoclinic.org/discussion/i-have-a-recurrenting-event-in-which-my-blood-pressure-drops-to/

What are the next steps for you now that you've been diagnosed?

Colleen
Connect Community Director

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I'm not sure if tachycardia is the appropriate dx currently; since the ablations, it has changed to bradycardia, hence, the pacemaker. The tachycardia was just the beginning. I now have shortness of breath, a spiking blood pressure which can descend as quickly as it increases and chest pains. I seemed to become symptomatic from the least bit of activity or sometimes from no activity. Stress test showed a TID ratio of 1.45 and the cath showed absolutely nothing - clean arteries. Just had a lung CT yesterday and scheduled for yet another echo. Previous echos produced normal studies. I'm sure this didn't clear up anything as to where my post belongs. Believe me, no answers or suggestions after almost 20 years of this. By the way, I'll be 54 at the end of March.

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