Jack51

I just wanted to give an update on the 2 previous posts that you had responded to.

I did receive a Duel Pacemaker on the 1st of November. I was very surprised that the procedure was as simple as the EP doc said it would be. I was of coarse sore for about 4 days. I went home the very next day. I had advanced 2 degree av block with syncope. The doctor had told me this might help the syncope but not to count on it ( i did). Saturday the 5th, I had a syncope episode, I went to the ER and they discovered that I had pulsatile tinnitus in the right ear they indicated that this might be causing the syncope. Funny, that I have told every doctor that I have had this for about a year and they just shrugged their shoulders as if this wasnt important. And it may not be. I havent read up on it yet but wondered if you knew anything about this. I have this pulsating heartbeat that keeps time with my pulse and if I press below my ear under my jaw line it will quit when I release it starts back up again.

I also wanted to thank you for responding to my posts as quick as you do. I have really appreciated your information by reading the other posts that you have responded to. Thank you for being on this board. :angel:

I was just doing some reading about your condition. According to tinnitus-audiology.com "Objective tinnitus that is strongly associated with the timing of the heart beat is most likely the product of a blood vessel malformation of the arteries and veins of the head or neck area. These blood vessels are located adjacent to the ear on the surface of the head or just inside the head. These cases require special imaging techniques and often require surgery to resolve."

I am not sure if this would apply to your case or not, I have never known anyone to have those symptoms so I could be way off base. When you say you have an "episode" do you pass out? What happens? Good Luck!

Hi poolsharky,
Sorry to hear you are having the symptoms,but that doesn't mean you had the pacemaker in for no reason,does it?I don't know anything about pulsutile tinnititis.
My daughter has 2nd-3rd degree heart block and will be getting a pacemaker eventually.She has had the heart block since her 1st heart surgery@ 2days old, she is now 11.She has just recently been having symptoms of needing a pacemaker. I have a quick question.....this pulsutile tinnititis.... does it cause headaches?

Hello, To answer both of your questions...yes, I do pass out but not all the time, 2 or 3 times a month. Sometimes I come very close. I can tell when it is starting and I have learned how to manage this a bit. This problem started a little over a year ago. I am not sure if this had anything to do with the AV heart block or not. I think that I have let things go on too long before I got medical attention.
As far as the pacemaker I really needed it. They had found this problem with a 24 hour holter monitor and then they put me on a 30 day Kings of Heart monitor and this had showed worse findings. There were times my heart beat would be as low as 31 beats per minute and then jump to 136 but most of the time I had a heart rate of average 43. That explains the lack of energy and fatigue I had.
The Pusatile Tinnitus is something I have had for a couple of years( I didnt know what it was until the ER visit this past week-end)and because my GP didnt say much or respond when I would mention it I didnt think it was much to worry about. The head pounding started about the same time as my heartbeat in my ear, up to that point I really never had to many headachs.
I go see the Neurologist on the 18th and the ENT on the 18th as well. I will keep you posted and if you have anymore questions please ask.

I just wanted to add that all of these symptoms started with in the last 2 years and not at the same time. I thought I had a case of the flu even though I would always get a flu shot every year and as the symptoms got worse the Doctors thought I had an lupus or something along those lines and in July of this year I just got to where I was sleeping more than awake I have to have at least 12 hours of sleep or I just cant function well and I always have a nap after about 4 hours of being up. I have always been very active I have 3 girls and working full time and running them everywhere for all of their activitys. So when this got to the point that I couldnt get out of bed and started missing alot of work something was wrong. Hopefully I am on the up swing of getting all of this taken care of. :D

What are your daughters symtoms. I can tell you that I really was upset to find out that I was getting a pacemaker, because I have watched my father who has had many bi-pass and angeoplasties (sp) and is now in heart failure.
I just thought that I would be in pain with a hard recovery period. But it went just as my EP doctor said it would. I was asleep for the procedure and slept all day. The next morning they were surprised to find me dressed and ready to go home. I was sore for a couple of days but able to dress and move about. I made more out of it then nessesary.
I hope that your daughter is doing well please keep me posted as to what the doctors will do for her heart block. I will keep her in my prayers :angel:

Hi poolsharky,
I confused,(sorry) Why did your heart go into heart block?
My daughter has been in heart block all her life,caused from her open heart surgery. She thrived well for 10 yrs without any symptoms. She has had a low heart rate too. Her cardiologist decided that it would be a good idea to put a pacemaker in, even without any symptoms,but not right away(FEB)
Well, she started getting SOB, doc decided to put her on a "Waiting list" for the pacemaker.Then,Nov 1 she complained of feeling REALLY DIZZY, headache, blurred vision, nausea ........hospital bound.....HR of 35.......3 days in hospital......still undecided if they are going to put it in.
Anyway, concerned that her headache is still lingering....tylenol just dulls it.
Good luck with neuro & ENT,
kelly

Poolsharky, I have had similar symptoms for the past 4 months. Everytime I went to the doctor I told them it felt like I had the flu it just never went away. I was constantly missing my college classes and work too. I also had spells where I felt like I was about to pass out. I came very close several times before I decided someone had to help me. All tests came back negative. My blood pressure was slightly elevated (150/90). My doctor perscribed Altace and so far the spells of almost passing out have stopped. I am still very careful and watch out for the signs that I may pass out.

I do have alot of ringing in my ears and I am dizzy sometimes. A Neurologist told me that I probably have an ear disorder but I havent gotten anything done about it. I dont hear my heartbeat in my ears or anything like that though.

Which of your symptoms have disapeared since getting the pacemaker?

Poolsharky,

I have been reading (doing a google) this afternoon on "pulsatile tinnitus with syncope". Specific information is hard for me to find. The best info that I have found is posted below in a reply to "I can hear my H.B., is this normal?" I did read where injuries to the neck and head can cause dissections (tears) in blood vessels, resulting in P.T.

I hope that you can get an MRI or MRA, and not a ct scan in diagnosing the cause of your P.T. I complained of a bad headache while in the hospital after a heart attack. A ct scan found nothing, but an MRI found that I had had a stroke, due to a small artery blockage.

I am glad you got your dual pacemaker. I hope that this cures the fatigue that has plagued you for so long. How are you feeling? You seem to have come through the procedure like a breeze, thank goodness.

Boy, I find it easy to believe that your doctor paid no attention to your complaints of the symptoms of p. tinnitus. I really don't understand them sometimes. Maybe early on they worried about their patients and all their symptoms of rare conditions, then after finding little to nothing, either lost the motivation to explore to the end, or they just started to get nervy, from all the worry, for no apparent reason. I could walk into my GP's exam room, bleeding profusely, and he would doubt that I was bleeding, lol. You really have to be persistent with finding the cause of your symptoms. They don't like to see you for more than one ailment at a time, either, it seems.

Poor blood circulation from an extremely low heart rate, could be involved with your pulsatile tinnitus. It could be something really minor, like a little bend in one of your small atreries near your ear. I am not saying this to scare you. I just wanted to give you some conjecture on my part, since I know absolutely nothing about this condition. Since you can stop the sound by pressing either on or near your carotid artery, I think that it, or maybe one of the smaller arteries that it feeds, may have a disturbance in the blood flow. (I should be arrested for impersonating a doctor) Don't let this worry you, OK? I would try to get as much rest as I could, until you have seen your doctors. Get some help with those Gals of yours, lol. Don't push yourself for now. Fainting is dangerous in and of itself, because you could injure your head (and be like me)!

Good luck with your new adventure! Keep the docs straight and let us know how you are doing on a daily basis (this will cause you rest, while sitting and typing, lol). G-d bless you, and take care :)

As for the near passing out and passing out, my cardiologist told me there is medicine for this. I am not exactly sure what it is. I wasn't too worried since I havent actually passed out. I did get an event monitor to wear for 30 days. If I feel faint, chest pain, etc.. then I press a button. Then I dial a phone # and hold this event monitor up to the phone reciever. Data is transfered over and if anything serious is seen I would be told to go the hospital.

Hi guys,,

I will try to put as much of this in detail as I can. Warning this is pretty long. Some of this may not be heart related but this is how I got to where I am today.

Back in May of 2001 I had a severe kidney infection, I was hospitalized for 8 days. I have never fully recovered from this. Most of my life I have had continual infections ( kidneys, UTI's) Had several test all came back normal. Since the last major kidney infection in 2001 I have noticed that if I would walk more that a mile I would get purple splotches up and down my legs and my feet legs and hands would swell. Being out in the sun just makes me sick. Again back and forth to the doctor everything normal.
In October of 2002 I had started falling, always landing on my knee's, this was when the doctor decided that I needed some test ran and found a tumor in my right knee. The tumor was removed and was found to have PVNS of the Giant Cell type ( Pigmented Villionodular Synovitis).
The reason that I mention the above is because I feel that somehow this is all connected. I have felt like crap since. Here is a list of my symptoms since

Pulsatile Tinnitus - Diagnosed by ER
Syncope - Fainting and near fainting. ( hot, cold, sweating, shaking, sick to stomach, eveything goes black, muscle twiching,)
Hair Loss
Bloated Stomach - I could probably pass for 6 months PG
Weight gain - I have gained 37 pounds in this time. My normal weight has aways been 128.
Sweating all the time
Joints ache - x-rays says no arthiritis
Kidney infections
Muscle stiffness- If I set to long on the computer my arms are numb and heavy my legs swell. ( sometimes I move like I am 90 but I am only 45)
Sleeping habits - what a nightmare. If I can get to sleep i can sleep up to 18 hours straight. but most of the time I sleep 3 hours sometimes less. If I get woke up for any reason I cant get back to sleep.
RLS - Self diagnosed, I see a neurologist on the 18th of this month
Raynaulds Syndrome - Rhuematalogist dignosed last month
IBS- I was scheduled to have a Colonoscopy on the 21st of Sept. on the 20th I had a gallon of system cleaner to drink, I got 2 glasses into the drink when I had one of my fainting spells went to ER and the determined that I had Syncope put me on a 24 hour holter monitor and discoverd that I had the heart block. ( well the colonoscopy is on hold until all other problems are fixed)
I am sure I have left somethings out but this is why I ended up on the loop monitor for 30 days and discoverd that the AV block was worse than expected.
From what I have read AV block is caused by something and it has not been determined what that something is. I thought that I might have had lupus and through testing that has been negative. So I am not really sure what has caused the AV block. The Electro Physiologist (sp) called today to do a sonogram of the jugular and carotid arteries I went and did that this after noon so maybe in a day or two I will know something about that test.

Hi poolsharky,
I confused,(sorry) Why did your heart go into heart block?
My daughter has been in heart block all her life,caused from her open heart surgery. She thrived well for 10 yrs without any symptoms. She has had a low heart rate too. Her cardiologist decided that it would be a good idea to put a pacemaker in, even without any symptoms,but not right away(FEB)
Well, she started getting SOB, doc decided to put her on a "Waiting list" for the pacemaker.Then,Nov 1 she complained of feeling REALLY DIZZY, headache, blurred vision, nausea ........hospital bound.....HR of 35.......3 days in hospital......still undecided if they are going to put it in.
Anyway, concerned that her headache is still lingering....tylenol just dulls it.
Good luck with neuro & ENT,
kelly


I dont understand why they want to wait with a heart rate of 35. I bet she feels really dizzy. Is it because of her age?

Wow you have really been through alot! I hope the lastest tests find something. Let us know what the doctors tell you. Good luck and hope you feel better

WoW Poolsharky,
You sound like you have had a bad couple of years.I have not been feeling well for awhile, myself, and with that I ended up finding this board and in trying to diagnose myself, I have read alot about Lupus, and you seem to have alot of the symptoms.Have you ever read the lupus board?There must be something that is causing your problems .
Thanks for being concerned about my daughter.I think it does have alot to do with her age,plus she is on no meds now, which I understand would change with a pacemaker(coumoden)
They also believe that her recent symptoms are from a recent throat infection or possible puberty.......I don't know about you but when I started puberty I didn't have those symptoms, and she has had plenty infections and has never had the symptoms either.
So.......now I'm just waiting for my GP to return from vacation to see what we can do about this constant headache. AS for dizziness, she hasn't complain to much about that anymore.
Also...... the lowest her HR was at the childrens hospital was 37 when she was sleeping, but because of the heart block I don't understand.
I'm not a doctor....... but...... the doctors aren't God either.
I don't know what else to do, but wait.
You take care of yourself, Kelly