Angelika_23

Just to clarify, it was not the H1N1 flu that was so bad for my son, it was the pneumonia that followed it. He got over the virus in about 5 days, was just tired after that. Then the pneumonia hit. The boys' pulmonary specialist said with any flu there is about a 20% chance of a post viral pneumonia, and an even smaller chance of it being complicated. BUT - I think this flu is producing higher numbers of these complicated post viral pneumonias. That is (in my observation) what is getting people. So the thought of the other two boys (who are more health challenged) getting this pneumonia scares me to death. My oldest son was in the hospital 16 days and had two surgeries. Sophia, yes, my boys all have asthma. Although the oldest had the mildest case and was the healthiest. I do from time to time have to give breathing treatments. The two younger ones have been hospitalized for asthma a few times. I have to take the oldest back to Children's in a week and a half for a follow up from all the pneumonia and complications. MomtoGuiliana - it is nice to hear what I heard validated. I am sure you will make the best decision for you and your daughter. Angela

I talked with my primary care doc and my children's asthma specialist. What I heard was: 1. If you have underlying health issues, you should get the H1N1 shot, not the nasal mist 2. The H1N1 shot is made exactly the same way as the "regular" flu shot. There is nothing "new" or "experimental" in it. 3. If we get the "regular" flu shot and tolerate it, then we should have no problem with the H1N1 shot. 4. In the next year or so, the "regular" flu shot will contain the H1N1 as well. Like I said, this is from my primary doctor and the boys' asthma specialist at Children's. We have all had the "regular" flu shot, and I will be getting the boys vaccinated against H1N1 as well. What happened with my oldest son was way too scary. I'm not taking any chances. All my boys have asthma. Angela

Mine probably came from viral meningitis. And my symptoms were hit and miss for several years until they came to stay in 2007. So I don't know if I had a second trigger in 2007, or it was just taking its time working up to the big crash.

Mine does this too after a really bad flare. Nothing seems to help it. I find if I go too long between hair washings it makes it worse. I hope you can find a solution. If so, please share!!! Angela

Also, Mary from OH passed away in Sept 2007, there was a post from Nina about it on Sept 12, 2007. Angela

This was a thread started by Ernie in May - "Hi, I am not posting much lately because I am keeping busy with a more busy social life. I will keep reading some post but I will not be around much. Have a nice summer." I am assuming she is feeling better and enjoying herself! Angela

I get those. It is tough. I find that the more I lie in bed, the worse they are when I get up. My beta blocker has helped a lot to keep the pains at bay, but I find that when they are bad, I lie in bed for the day. Then, the next day I graduate to half lying on the couch, then the next day sort of sitting on the couch.. You see where I'm going here? I know you are probably lonely and bored out of your skull, but getting out when you are feeling bad is not a good idea. I know this personally. I sure hope they can find something that works for you, so you aren't so miserable. Angela

Three things got me through the terrible times of 180+ constant heart rates and really rough times. 1)My friend, Deana, who is a nurse and who would (and still does) take the time out of her busy life to sit on the phone with me for hours, talking me through. She has been an absolute godsend, she can make me laugh even when I am frightened. She can talk clinically with me, and make me understand that I am not going to die when my heart rate is high. 2) I started having weekly Bible studies with another good friend. Those have helped me feel more "centered" and I can really tell a difference when I miss a week. The Bible studies have helped me to feel better about what is going on in my life, and how I can use it to help others. 3) My amazing and wonderful husband who is always supportive. He has been here the whole time, and insists on going to all doctor visits with me. In the beginning, he was skeptical, still supportive, but skeptical until the doctors had evidence that something physical was going on. I guess stubbornness is also a factor. Once I had a diagnosis of sorts, I sort of dug my heels in and refuse to give up until I am either feeling better or find out what is wrong. I do a lot of research online now. This site has helped me the most, especially in the beginning.

I got viral meningitis in 2001. About 6 mos after the meningitis, I started having "episodes" of nervousness (which I now recognize to be an extremely high heart rate). My PCP tried putting me on several anti-depressants, saying I had an anxiety problem. None of the medications worked, and sometimes I would feel better and sometimes I would get worse. In 2007 (Yes, 6 years of "episodes" that were diagnosed as "anxiety") my PCP did do a holter monitor when I insisted something wasn't right, and the monitor company kept calling him because my HR would go so high. He didn't seem to be too concerned, and sent me to a cardiologist who said I has IST and prescribed me atenolol which didn't work for me. About a week later I went to the hospital because my HR was so high and it wouldn't come down. I was admitted for several days, and the admitting doctor said, "I think you might have POTS". She had just been to a seminar about POTS, that is the only reason she even knew how to diagnose me. Of course, I didn't know what that was, and when I got home and googled it, I googled POTTS, which is an entirely different thing! It's been a battle to keep up with all this, I am still having problems and still looking for some answers. I did get a positive TTT in 2008. Angela

The visit went well at Children's today. Still on the antibiotic and still using inhalers, but the bad cough has lessened. The doctor said his sputum culture had a lot of white blood cells in it. Poor kid. But it sounds like he is on the mend now. Hopefully they STAY that way. I'm tired and need a break! Thanks everyone, Angela

Thanks everyone, We go back to Children's tomorrow afternoon to see how he's doing. At the moment, he's with his dad, (my first husband) and I can't put my hands on him or look at him. He's been using his inhaler and having dizzy spells from what I'm hearing. My littlest one also has bronchitis. Things sure do stay active in this household. My bump is gone and things are getting slightly better physically for me each day. I appreciate all of you! Angela

The allergist finally called back. He said I would have to come in tomorrow and he would prescribe Prednisone. As I have adverse reactions to Prednisone, I don't think that is a good idea. He kind of acted like he thought I was being difficult on purpose. The good thing is, the lump seems to have reached it's peak. I THINK it is possibly fading... a little... I get to see my EP cardio tomorrow morning, I guess I'll see what he says. But I have to say right now I feel like the majority of the medical people around HERE (in my area) are not helpful, nor do they seem to want to be. I am terrified to go to sleep tonight. I am so afraid I will wake up horribly like I did this morning. Angela

The ER doc didn't seem overly concerned about my "orange". It does look like it is at least starting to fade... I am wondering if I should call the allergist.

Well, I woke up this morning with my HR so fast I couldn't count it, nauseated, lightheaded. I thought I was going to pass out. I took my morning meds and laid back down. After about 10 mins, I started feeling like my heart was skipping beats. I had my husband take me to the ER. They didn't do anything except take blood and monitor me. My Toprol kicked in, and the heart rate slowly came down to "normal". So I am home now. The only odd thing is that stupid bump from allergy testing swelled to the size of an orange overnight. Could this have caused my POTS to spin out of the fragile control we have? I have taken my Zyrec this morning, hoping it will shrink the bump. Thanks, Angela

Okay, now I have a bump the size of an egg on my arm. All the quarter sized spots have gotten together. It has been growing since I got home. I put Benadryl on it, but it still itches and is still growing. It is warm to the touch as well. Should I be concerned about this? Why can't anything go normally for me? Angela

Well, I got through it okay. I have some spots on my arm that got bigger than quarters, and won't go down though. Hopefully by morning. I put Benadryl cream on them. I am also allergic to everything. But, since I am on BB we can't do anything about it. I am not sure why we had to do the stupid testing. I mean, how helpful is it to know I am allergic to most everything if there is nothing we can do about it? Glad I get to start my Zyrtec tomorrow morning!!!

Sorry, it is skin testing. So I should be okay for skin testing while on my Toprol XL? I kind of don't understand why we're doing this. Going off my BB is not an option, so if I'm allergic to the world, what does it matter? I can't have shots while on BB... Still confused, Angela P.S. At least I'll get my bloodwork back today. Maybe that will answer some questions

After doing a search here on allergy testing, it seems that I shouldn't be taking a BB while being tested for allergies? My allergist/immunologist knows I am on a BB, but did not ask me to stop it. Now I am worried. Please help? Angela

Okay, he's sick again. Constant coughing up green stuff, throat is hugely swollen. He's begging me to take him to doctor. Hopefully it is just another viral thing, and not the pneumonia acting up. We are leaving soon to go get bloodwork, sputum culture and chest x ray. Poor Kid. I hope he isn't admitted again. Angela

Also if you are low on fluids, it can make me tachy. Try drinking some water. Illness also does it for me. Also my period, or being overtired. Good Luck, Angela

We had our pulmonary visit yesterday and he is improving! His chest x ray, while not nearly normal, is markedly improved! They decided to discontinue the PICC for now so he is very happy. I hope he doesn't start with fevers... Let this be the end of the nightmare! Thanks for all the thoughts and prayers! Angela

I take a teeny dose of Toprol XL. Seriously, 12.5 mg daily. It does much better than the cardizem! I have some other Toprol I can take in addition to that is not long acting for if/when I have "breakthrough" tachycardia. Haven't tried it yet, but hopeful it will work. My PCP just came up with that plan. Angela

The only thing I can add is I have taken Cardizem and it made me extremely tachy and palpy. My EP says that med is bad for POTS, and usually makes the tachycardia worse. I am so sorry you are going through all this. Angela

I saw Dr. Grubb at the end of July. He was concerned that I keep getting "sick" so much. I get everything that comes along, and keep it longer. Dr. Grubb suspects a possible immune deficiency, especially since one of my children does have a diagnosed IgA deficiency. So the new doctor has ordered a slew of testing and the thought of accomplishing it makes me tired. Skin allergy testing, blood tests and CT scan. I am still constantly exhausted and am still having stomach issues. Thanks for letting me vent Angela

I guess I just wonder WHY NOW??? I have never had this problem before - unless all these "intestinal flus" that I get have been this all along... Hmmm? I thought I was going to be one of the "lucky" ones without the GI stuff. Thanks everyone, your comments give me a lot to think about. Angela