Atrial Fibrillation

[fross]

Wow I got through at last. I hope I can put this across properly. I have Atrial Fib for which I am taking 120 mg Sotalol twice daily.

I still have AF it has not got any better. The sotalol makes me anxious and the Cardiologist says that the problem is not in my heart - it is structurally healthy. The Cardiologist doesn't want to see me again. I can't have ablations or pacers because it would not help in my case. I don't understand.

I also experience black outs and convulsions, dizziness, and vague transient neurological problems such as numb patches, burning welts across my skin but you can't see anything, severe headaches etc.  My back also goes into spasm from time to time. I'm told by my GP that none of my symptoms are connected. He says I have AF, epilepsy, Menieres Disease and Migraine. He rises his eyebrows to my transient symptoms. I think he thinks I'm neurotic - I am not. All these symptoms started 20 years ago after I had an epidural which punctured the spinal sac.

My question is if my heart is healthy and the problem is in my nervous system as indicated by the cardiologist could all my symptoms be caused by a type of chiari malformation that was exacerbated by an epidural. Or is it a problem with my Vagus Nerve. I quite often keel over and convulse when I've had a fright. Sometimes I stay concious, although I am not aware of whats going on around me. I go into a black tunnel in my brain and think I am dying. I am told by witnesses that I convulse. It akes me a couple of days to get back to 'normal' after an episode. My heart is permanently irregular and fast. I also suffer from slightly low blood pressure.

Also, if this is the case Am I on the right medication. I also take Carbamazapine for the convulsion although it doesn't help. I am going to see a neurologist finally after 20 years to see if they are connected. Sorry this was so long but any help would be appreciated. I get very frightened and alone with this.

Thanks

Fran

[CCF-M.D.-DLB]

I do not think the epidural is in any way connected to any of the symptoms you are experiencing, nor do I think that all your different symptoms are due to one diagnosis. Sotalol is a reasonable medication for atrial fibrillation, and I would not expect it to cause anxiety as a side effect. I agree with seeing a neurologist, especially if seizures seem like a possibility.

[crook_n_flail]

Hello Fran.  I sympathize with you because I know exactly what it feels like to know full well that something is wrong with your health and have people, including doctors, blow you off.

I'm now 27 years old and I've had atrial fib since i was 23.  My age seemed to be the only thing anyone was seeing though.  Each time I would have an episode my family would tell me I was just having anxiety attacks.  Then when i would visit a doctor he would tell me the same thing.  They almost had me believing it until one evening after work I was playing basketball with my brothers and blacked out.  They took me to the ER and there they finally caught my a-fib on an EKG.

Since then I've been seeing a cardiologist and he is treating me with Rythmol 150mg 3 times a day.  It's worked for about 3 months but recently I've been experiencing a-fib again but the doc doesn't seem to want to accept that.  He has more faith in the meds than what I'm telling him.

Anyway my advice to you is you know what you feel, nobody else does.  If you think something is wrong it probably is.  Don't let a complacent doctor cheat you and your family.  Keep looking.  See as many doctors as it takes to get the answers you need.  Best of luck to you.  I hope you get to the source of your troubles.

crook_flail (richie)

[Lyn2]

Wow!  It does amaze me how SOME doctors assume that you have anxiety before believing that there is actually a problem.  Unless it is documented and seen, it doesn't exist.  I find that very upsetting. I am a 32 yr. woman.  My heart was stopping for several seconds at a time, I had pitting edema and I couldn't breath.  I had fluid in my lungs.  Finally, my doctors agreed to put a 24hr. monitor on and saw that my heart rate was between 10bpm to 30bpm.  I got my pacer.  After that, I had a-fib which I was afraid to mention.  I finally did, and it was sort of blown off again until 3 times in a row I was in my doctors office with a rate of almost 300bpm.  Even after all of this I am still afraid to complain, unless they can readily see it.  I sympathize.  I am very curious, do young men have the same issues or are the dealt with more seriously?  Anyone?

[Been down that road......]

Dear Fran,
Have you had any testing to see if you are for sure having seizures?  When a person faints you can convulse too.  If you had a fright and went down it is possible that you fainted and you aren't experiencing seizures at all which could be why the seizure meds aren't working.  You should bring this up to your cardiologist and possibly get a referral to an electrophysiologist- a cardiologist who specializes in the conduction of the heart.  They can do a tilt table test on you to check you for heart vs. neuro related fainting.  
I wish you the best of luck.  I for one do believe men are listened to far more seriously than women are especially when it comes to heart related problems.  Hmmmm , isn't heart disease the number one killer of women today?

Zap

[fross]

I want to thank you all for writing your comments and showing your support. I have been beginning to think that perhaps I am over re-acting. It kind of shakes your confidence. However, I know that I am not.

I requsted an ECG last week as I learned that I was supposed to get one everytime my sotalol was put up. They had put it up 3 times and never told me I should have an ECG. Anyway the ECG showed up a slightly long QT! Whether this is from my medication or my syndrome I do not know. I am waiting for the Cardiologist to get in touch Meantime I am left to my own devices on the same amount of Sotalol. It is quite frightening especially when I read that that the LQT causes the same symptoms I have been experiencing for the last 20 years. And need I say the rest...

Fran

[R.G.Hunt]

My friend Lil at 50 years of age has informed me that she has pheaumatic heart disease -she has atriul fibrilation and her mitral valve is 1.2 cm diam.
Lil had open heart surgury 32 years ago (mitral valve split) and her doctor at the time told her it would last for approximately 15 years. Recently tests have indicated that she is having difficulty again, but the doctors will not operate because of scar tissue.
The medication she is taking now are Digoxin, Coumadin.
Do you think she should see another doctor regarding surgury, treatment or medication?
Worried about my friends Ken and Lil and I do want to help.
Best regards,

R.G.Hunt