Complicated question
Hey everyone,
well as some of you may know I got my first PM in June for syncope episodes due to low BP and a condition called dysautonomia. I am on tons of BP meds and now with the PM I thought I would be doing much better. Well this is not really the case, I am still fainting at least twice weekly with no warning signs. Many injuries from this!!!!!
The fainting has been plagueing me for over three years. I have not been able to drive or work. I have accepted that I may never fully recover. But my question is this- does anyone else suffer from syncope and if so how can you continue to live your life (work, drive, ....).
Any advice would be gratly appreciated!
Love Ya'll
Bini
7 Comments
I agree with Boatman...
by bambi - 2008-01-04 10:01:10
I too had fainting episodes before my PM, and [not as often] after my PM. When the Dr. raised my lower rate from 70 to 85, I no longer had any fainting episodes. They usually don't like to raise the rate that high because in my case, I'm paced 100% on top, and I go through batteries quickly, but if it stops the fainting, and all the risks that go with that, who cares? I'm so sorry this has so disabled you! Fainting twice a week is excessive, and I can't believe no one will try to get to the bottom of this. I can totally understand your frustration and your disillusionment! Have you tried seeking another opinion? Take care, and know that people on this site care!
Bambi
Blackouts
by ela-girl - 2008-01-04 10:01:23
Hi, Bini.
I just spent a few minutes writing you only to have my computer freak out, so I had to start over. I'll try to help again if my computer will let me!
I definitely share in your frustration and pain! I had my pm implanted via emergency surgery for severe bradycardia (were talking 4 bpm here) and Neurocardiogenic syncope (also called dysautonomia, VVS, etc, etc,). I suffered with blackouts for 4+ years--it just started one morning as I was getting around for work and kept up. Before the blackouts started I was sleeping ALL the time--it was like I was sleeping my life away! My doctors ran tests and never caught anything. They just medicated me and hoped I would go away. I even had one doctor say it was in my head. It wasn't until I moved to another state that I got a great EP who saved me.
For me, for the most part, the pm has solved my problems and symptoms. I'm still on a beta blocker but am going in to try getting off of it because it never helped before the pm, and I don't think it's helping now. It's just eating $30 out of my pocket a month! I've only had a few instances of "spells" since the pm. Usually it's when I am under serious stress or have a cold and my period and a migraine at the same time.
It took me years of blacking out to realize that I would usually get these "spells" before the blackouts happened--but it still wasn't ever enough time to get in a position where I wouldn't hurt myself. I've been lucky too many times, but the doctors were afraid of permanent head trauma or death if I fell one more time. Scary thing, too, was that I would usually get these spells in my car driving!! Thank God I never had an accident and killed anyone. I'm a teacher and even blacked out in front of my kids-thank goodness they knew of my condition and acted like boy scouts! Anyways...I even have an extra bone growth on my head from hitting the same place on my head when I would fall. Yuck!
From what I know, you are not supposed to drive for 6 months after any blackout. I was never put on any driving restrictions, though. I basically put myself on driving restriction for 4 years. I would only drive if I absolutely had to. Some doctors can even have your license 'suspended.'
My blackouts were usually so random, too. They happened 6 times a day for a week or a couple of times a week or once a day or every other day for a month or so then I could go months without them. It was terrible. I would be having a "good spell" and then blackout while grocery shopping with my husband. It was a horrible time. Your body always takes 2-3 days to find homeostasis when you blackout--then when you are blacking out multiple times in a day, week, or month, well, it just makes things impossible.
I was told to try compression stockings, eating a diet higher in salt, and drinking fluids to keep the electrolytes up. Nothing I did ever helped. I do find that drinking Propel and having a salty snack does help when I'm feeling a case of the blahs. All the beta blocker does is make me feel sluggish, but it's supposed to keep my heart from pumping too hard when there isn't enough blood in it to pump out to the body.
I wish there was some magical answer to your problem. I really feel for your situation. Feel free to private message me whenever.
Keep your spirits up!
ela-girl
Oh Bini...
by cottontop - 2008-01-04 10:01:32
I was just thinking about you today. I hadn't seen a post for some time. Now I understand why. I am praying for you.
Why are you on BP meds.? It seems like you need to up your blood pressure. What am I missing? I pray things get better for you. Keep us posted.
Love and prayers,
Amy
a small ray of hope?
by kmhayward - 2008-01-05 10:01:22
Bini,
what device do you have? Get your EP to discuss a closed loop stimulation (CLS) device with you! print off this study and ask if this is suitable for you
http://intl-europace.oxfordjournals.org/cgi/content/abstract/6/6/538
i will send you a report i wrote on malignant vasovagal syndrome (dysautonomia) and pacing if you like
katherine
Thank you all!
by bini - 2008-01-06 01:01:06
Sorry it took so long for me to respond, but I have fainted three days straight and got pretty beat up.
Anyway, thank you all for your advice! I have tried the salt intake which helps a little. The BP meds I am on are to increase the BP not lower it. I see one of my cardios where I live on weds and I am going to ask him to increase the rate. I also fly out to ohio at the end of the moth to see my cardio specialist. I am nervous though bc the pacemaker was the "last resort". I am hoping with the increase the faints will be less. I have a biotronik Cylos which is a Closed Loop.
My cardio in ohio did say this is a trial and may not work....I am just the type of person who likes to stay positive and never give up....but as the days go by...it gets harder and harder.
Again thank you all so VERY much for your help.
Bini
i totally feel your pain
by vickicabot - 2008-01-17 12:01:37
I totally feel your pain when it comes to the fainting spells. I have been fainting for around 2 years now, and I also beat myself up pretty good, including a very bad concussion. I was finally diagnosed by my EP as having autonamic dysfunction. Postural Orthostatic Tachycardia Syndrome (POTS), Inappropriate Sinus Tachycardia (IST), and Neuro Cardiogenic Syncope are my symptoms of autonamic disease. I have been through the run of tests and meds. I have to say, finding the right EP is the key to success. My general cardiologists really didn't have a clue. Now I deal only with my EP. I have gone from fainting 10 or more times a week two years ago, to now have fainted only twice in the last 6 weeks. I also had to go on long term disability and was not allowed to drive, until 3 weeks ago.I had to have a pm implanted in Nov of 07 due to my heart rate dropping to the 20's, but usually my heart rate stays above 150. My current regime of meds is Nadolol (beta-blocker for high bp and heart rate) 480 mg daily, Midodrine (vaso constrictor to prevent bp from drastic drops when standing) 10 mg daily, and Florinef (steroid to regulate salt and fluid). This has been the magic recipe for me, along with cardia rehab. Cardiac rehab is a safe place for me to do light exercising while on heart monitors. It has helped me and my doctors and myself figure out how to read my body and know when a fainting spell might be coming. I am now able to feel a spell coming and most often prevent it. Dealing with a condition of this sort really does require a lifestyle change. There are many "tricks" to aid in your body's circulation, which helps prevent fainting spells. Increasing salt intake is key (my EP has me drinking a lot of gatorade). The steroid I'm on enables my body to retain more of the salt and fluid. Being overly hydrated is very important. The med Midodrine is basically the same thing as wearing very tight compression stalkings, only much easier. I have also been taught not to go from a standing or laying position to upright without taking the time to let stretches first. Leg and calve stretching is also very important to continue while in the standing position. I'm sorry, I didn't mean to go on and on. I just understand how hopeless it can feel not to be able to work or drive. I was told that I would never be able to return to a normal life, but now I have. There is always hope, so don't give up. Remember, most doctors are just "practicing" medicine. If yours aren't making any progress, you need to get a second opinion from an electro physiologist that has some experience dealing with patients with autonamic dysfunction. God bless you in your journey!
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by boatman50 - 2008-01-04 09:01:27
Hi Bini, I have V V S and get spells sometimes. The docs could never figure out what to do and had me on beta blockers at first. That still did not help and I was sent to an ep. He took me off all meds and raised my lower pm rate from 55 to 70 bpm. He felt that if my heart rate was higher when I had a spell there would be less of a detrimental effect. It has helped me very much and even though I still get the spells they are shorter and less powerful then before. The higher rate and increased intake of liquids has made all the difference. So maybe you could see what your lower rate is and talk about raising it? Good Luck!
Boatman