They Can't figure it out.

So I got my pace maker in May 2007 after 5 years of passing out with Vasovagal syncope. (Took them so long because they thought it was just because I was young women, then they thought it was allergies.) Anyways I am still taking many drugs and have my pace maker, and I am still passing out. Im not talking just once or twice I have passed out every day in the 23 days most days more then once. I was put in the hospital and I still passed out there to. Anyways I was wondering if anyone else still had problems with passing out even after the PM and drugs. As of right now all the DR’s are saying is “we just don’t know” I am so open for anything.

9 Comments

My pacer setting.

by bowlrbob - 2008-02-12 02:02:15

Read Message
Here is what I wrote about just last month. Ask you Doctor or EP if this might work for you. If your Dr. would like to contact my EP who is also teachs at U. of Nevada, Reno. Let me know I will send you his name and phone #. Just private message me. A couple of our others here suffering with the same thing took a copy of this with them to their Doc. to have them read it. This doesn't work for everyone i guess but it sure has worked for me.



Neurocardiogenic Syncope and VasoVagel Syncope pacer setting.
Posted by bowlrbob on 2008-01-11 00:37

I have been troubled lately seeing all of the posts from our members who have VVS or NCS. The theme lately is I now have a PM but I feel terrible. I am still getting dizzy and still passing out or blacking out. Seems as though the pacer is not helping. I have seen many of these posts during the last few weeks. I have tried helping by mentioning what my EP did for me in fixing my problem with this malady. It has been hard to tell each one and based on all that are writing in there must be many more of you out there that are not asking the questions. So I thought explaining it here might be of some help.
My EP after my first 6 months with my PM and having dizziness and 1 blackout changed my settings. He raised me from 50 to 70 bpm. He then turned on the rate drop response now when my heart rate drops faster than it should ( and this happens several times a day ) the PM kicks my heart rate up to 100 bpm for 2 minutes then it slowly returns to the 70 setting. This keeps me from getting dizzy and from blacking out. This has worked absolutely great for the last year and 1/2. I have had no dizzy spells or blacking out episodes since this setting was done. He also had me increase my fluid intake with mostly sports drinks and keep my salt intake up. This really helps when I get the blahs.
My reason for mentioning this is in most of the posts the Doctor's either don't seem to have an answer or just prescribe more medicine. Or they seem to tell you well you will just have to live with it. Now I know everyone is different and maybe what my EP did for me won't work for you. But why not TRY, give it a shot what have you got to lose. Next time you see your DR. ask him/her about the rate drop response. Most of the newer PM's have this feature. Why would the companies put this feature in if no one was going to use it. It has been a lifesaver for me. Check it out. Bowlrbob


i understand...

by brokenheart - 2008-02-12 07:02:56

Hi. Im 25 and got my pacemaker about 2 years ago. I got my pacemaker due to a surgery that went wrong ( an ablation). anyway, Ever since i got it i started to pass out. Once it was the leads that had moved from its place. Then they thought it was due to the pacemaker. they changed my settings to 55-150. I am taking a corticosteroid to help with my passing out. they told me i have ncs or vaso vagal disease . I take a beta blocker also but sometimes i feel like im going to pass out. I havent but i do feel dizzy at times.The doc tells me to keep hydrated and to not get up from a lying or sitting position too quickly. I hope this helps. God bless.

I feel your pain

by bini - 2008-02-12 08:02:58

For 3 years I have been fainting almost daily. I get NO warning signs and have been injured so many times. I am unable to drive and work...very frustrating!
I got my PM in June and am still fainting. I am also taking meds to try to increase my BP which is low. I fly out to see my cardio at the end of this month hoping he will increase my rate repsonse time and also increase my BPM from 60 tto 70BPM.
I have had many tilt table test, eeg's ekg's halter moniters..... It sometimes feels like I am a walking medical experiment.
Fainting can be caused by so many things...mine is froma condition called dysautonomia which causes me to have tachy/brady and low BP.
Have you had any testing done? How is your BP?
Anyway, I am sending you a private message to give you more info...I hope it helps!
Christine

My story

by boatman50 - 2008-02-12 09:02:13

I got my pm after passing out. I still had problems and was sent to an EP. He was great. He said I have V V S also. He raised my lower setting to 70 from 55 and took me off all meds. Rate response is turned off. One key for beating the vvs he said was to stay hydrated. I was told to drink a sports drink like gatorade and have settled on Propel since it has less sugar. The vvs spells got fewer as time went on and now I get them maybe once a month or so, lots better then before. Stress also brings them on and I was told "lifestyle change"!
I hope this helps some, if you have any questions just contact me.
Good luck, Boatman

Hi

by faithman007 - 2008-02-12 12:02:29

I am sorry you are going through that. I have never passed out but I do get lite headed still. However I dont drugs for my pm. Kinda curious if i should. Other than that I pray that you get healed of this problem.

In the same boat

by gmnordy - 2008-02-12 12:02:37

Have had PM for 4 years. Still having syncope and near syncopal episodes. Doctors "baffled". Have a new EP. He scheduled tilt table test. Have you had one of those? Drs have tried changing the settings, it did not work for me. I am sorry you are going through this. It is frustrating.
Debbi

I Feel Your Frustration

by scadnama - 2008-02-12 12:02:40

I am a 23 year old female, and I have NCS as well. I was implanted with a pacemaker in late November 2007. The pacemaker has helped with the passing out, but I still black out. I have been put on numerous medications, and they are helping some, but I still I have my episodes every now and then. Please feel free to message me anytime. I may not have all the answers, but it definitely helps to know that you aren't going through this alone.

Amanda

Thanks

by kish - 2008-02-13 05:02:40

Well just back from the ER after passing out yet again tonight. So frustrating. Anyways Thank you all for replying its nice to know there are others like me out there. thank you for all your tips I am going to my Family GP on Thursday I as so bring this all with me. I need him to get me another new DR that can help because the one right knows nothing all he said was to drink more water and see him in 3 months. I all ready drink 3-4 litters of water a day pulse OJ for breakfast (my last internist DR told me oranges Oj and Bananas would help) and I drink lots of sport drinks on top of that. I am not to sure if I can drink more. lol. Anyways thank you all again I am so going to try to message you all, just not now because my neck hurts from hitting the floor and chair and my head ace is bugging me So I am of to bed at this point. Thank you all again.

I hope you get relief soon

by mandogrl - 2008-02-14 12:02:38

Altho I have had no more episodes where I fainted since I recieved my pacemaker, I've had more than a hundred in my life, so I really feel for you. Fainting always left me feeling bad for hours, even though I usually didn't receive injuries. Now I see why my EP refuses to drop the levels of my PM, when I complained that it wakes me up at night. I guess my pulse drops then. I pace at 2.9%
Try to get an appointment with a new EP asap, and keep in touch with us. Altho we all have different experiences, we have a common bond that allows us to understand and care.

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