It just gets more bizarre

[LoriSue]

It just keeps getting more bizarre. I certainly don't seem to be following any logical pathway toward a definitive diagnosis. Okay...here's the update. I took the holter monitor back this morning. I had it for 24 hours on Friday and took it off on Saturday. I had my typical morning symptoms Saturday.....wake up sweating, legs and arms felt like concrete, dizzy, couldn't sit up for about 40 minutes or so, couldn't see straight, etc, etc. Obviously I couldn't write down the time in the diary they gave me that is supposed to correlate to the monitor because I couldn't read the damn time because my vision was blurred. When I finally felt good enough to sit up and see I took my BP (diastolic was 40). I wrote down the symptoms on a piece of paper and explained that I didn't know what time it was because my vision was blurred. I turned in the paper with the monitor. Now here comes the weird part. Now I have to do a 30 day event monitor. How did we arrive at that conclusion when the 24 hour monitor hasn't even been looked at yet? I don't get it. I am not going to complain too much though because I fought too hard to get someone to do something about my symptoms in the first place. I am scheduled to pick up the 30 day monitor on Wednesday at 1:30 pm. And praise the lord......I have my digitalis back! I am so happy! I know that will help a little. I already took my first dose today and am staying up a little late so that I can get in the second dose of the day so that I get myself caught up like I am supposed to.
I was also prescribed cephalexin to get rid of a staph infection. Yee ha. That probably explains some of why I feel so crappy. The antibiotic is another reason I am staying up a little later. I want to get that second dose of the day in today. I will take that next 1000 milligrams at midnight so that I can keep it on a 12 hour schedule. Hopefully this will get rid of those lymph nodes that are the size of Texas in my neck, shoulders, and base of my skull. They hurt like hell. I am certainly keeping my fingers crossed that the cephalexin will kick the staph's butt in 10 days and that whatever strain it is doesn't take hold in some nasty place, if it hasn't already. I have another cardio appointment on April 6th which is next Tuesday.
Stokes Adams disease was mentioned to me today....are any of you familiar with it?
Lori

 

[Abbanabba]

Hi Lori,

You must feel like you're banging your head up against a brick wall sometimes!! At least things are moving in the right direction though, so that's a start.

Hope things go well at the cardio's on Tuesday. I'm actually getting my second opinion with a new cardio on the Thursday, so I'll be keeping my fingers (..and toes...and legs...and eyes...) crossed for both of us

Cheers
Anna : )

 

[SJJ]

Lori,
I'll take OHS anyday over what you've been going through! So sorry they don't have answers yet but I'm relieved they're at least paying attention now. Keep us posted.
Sue

 

[Nancy]

Hi LoriSue-

Progress is being made, even though it might not seem like it right now. The event monitor is a good thing, it can catch more things because of the longer time frame. Maybe the fact that your doctor put you back on Digoxin is the reason for the event monitor. Maybe he/she wants to see what affect that has on your heart rhythm. Be sure to record each and every "thing" you feel, even though it might be trivial. Thank goodness you are getting treatment for your infection.

Good luck!

 

[Karlynn]

Lori,
Seems like there are no quick answers, but it appears that your search for a diagnosis is being taken care of in a responsible, methodical manner. I'm glad you're back on the dig. How did they spot the staph infection. Those can be nasty. Will your appt. on the 6th give you the results of your echo?

Keep hanging in there. We're right there with you.

 

[Dee]

Hi Lori,

I'm glad you were able to get an answer about the swollen lymph glands and you're being treated for that. Did you end up seeing your cardio for that? Sorry to hear that the other part isn't so cut and dry though. At least they are working towards a diagnosis. Frustrating, but they're at least listening! I feel bad for all that you're going through, but hang in there, you will get some answers. They probably decided to do the 30 day monitor after they heard about your incident the other morning, just so they could get a better reading on everything.


As far as the Sokes Adams disease, I don't know that much about it. I did find a little info on the American Heart Assoc. website. It says that it is a heart rhythm disorder, caused by electrical signals being interrupted which causes a "heart block", which slows the heart rate and can cause fainting. It didn't say what they do about it though.

You're dealing with a lot right now girl! Take a deep breath and one day at a time! Be sure to report any more fainting episodes or anything like that to your cardio. We're all keeping you in our thoughts, sending positive vibes your way!! Keep us up to date on everything, ok?

~DeeDee~

 

[LoriSue]

I am glad that the infection is being treated. I would think I would be feeling a little relief soon. I really shouldn't have let it go as long as I did. My lymph nodes started getting big last week. I had some blood work done just prior to that and I figured that if I waited until Monday that maybe the test results would be back. Kind of stupid on my part to wait, but I hate to run into the doctor if it was something that wasn't urgent. I am not very good at determining which things should have priority. I guess that is a skill I need to develop. I will be interested in getting the formal results of the echo next Tuesday. I looked up the Stokes Adams thing on the web but couldn't find what the doctor was trying to explain to me about the correllation between the valve, narrowing of the aorta, and Stokes Adams disease. I didn't have a clear understanding about what he was trying to tell me on how the bicuspid valve and a narrowing of the aorta can cause Stokes Adams. And then he immediately started talking about how he wants to do a test on my pancreas because my body is having an unusual insulin response. He started talking about some injection that sounded like it wouldn't be too much fun and I had so many thoughts going through my head that I couldn't keep it all straight. So tomorrow I go to pick up my 30 day monitor. My question is this....How do you bathe? I hated not taking a bath for 24 hours with the holter monitor? Bubble baths are a luxury that I afford myself almost on a daily basis. I love the quiet time and use it to meditate and center myself.
I am glad I am doing it now though...I want to be tan for my wedding and I don't want to have funny little white patches from the electrodes. This way I will be done with the test by the end of April and that leaves me plenty of time to develop a light golden tan.
JEEZZ...that sounded bad! I must re-examine my priorities.
Lori

 

[Marge]

I've never had to do the 30-day event monitor, but the way it was explained to me, it is set up differently from the Holter, so you can take the patches off and re-attach them to bathe, etc.

Also, the event monitor is a little different from the Holter in how it works: the Holter monitors the heart?s electrical activity continuously, whereas with an event recorder you activate the recorder by pressing a button whenever you feel symptoms.

 

[KimC]

Lori,

You'll have to take off the monitor when you bathe. Ask for new tape nodes, if they haven't already given them to you so that you can replace them after drying off.

Kim

 

[bethanne]

Hi Lori,
Don't be too hard on yourself. When you are not feeling well it is hard to absorb what the dr. is saying. The irony is that is when we need to be hearing/understanding the most!

Hopefully you will have answers to your questions soon!

 

[MelissaM]

Keep a close eye on that infection. My infection was strep, not staph, but caused many of the symptoms you describe - double vision, headaches, feeling like the world was spinning around me. Turned out to be endocarditis in my case. I am sure your docs have you covered and would have spotted any vegetations in the echo, but just know that systemic infections can cause a rash of really wild symptoms.

Keep us posted.

 

[ticktock]

Staph?

Staph?

Melissa and LoriSue
My first thought upon reading your symptoms was some type of systemic infection. They are so text book. HOpe you don't mind me interjecting here, I don't believe we have met. I once suffered the same type of thing with a staph infection from a bug bite! (leave it to me!). HOpe you are on the mend by the time you read this!
mindy