ksibert676

Anyone have issue with Ivabradine and conjunctivitis? My eyes are swollen and extemely photosensitive. Professionals at the moment think it's allergy related??? Now I'm beginning to wonder. Thanks in advance. Karen

Light sensitivity (photophobia) on Ivabradine? I'm having issues with chronic conjunctivitis and wonder if it's the ivabradine.

Yep, you are correct referring to mitochondrial disorder. Thanks

Gave me terrible tachycardia, my cardio told me to stay away from that class of drug due to POTS/tachy.

I'm asking this question for a friend who is having trouble with the sign up procedure on dinet. Due to her asthma she cannot tolerate beta blockers AT ALL, she has tried several, and gets shortness of breath. She is not willing to continue living if she doesn't get some relief. She's on Florinef, midodrine, salt & H2O. BB's she has tried. Corgard Coreg Lopressor Toprol XL Bystolic Pinodolol Ace-buterolol

I'm down to .05 mg of Florinef once a week. I know...a very low dose. My neuro once told me it stays in your system for 5 days. My HR and BP are great. My question is "Do you think I can discontinue it altogether?" Of course I'll ask my doctor but thought I'd ask you guys as well. Karen (I've been on the milk cartons)

I spoke with Melissa last night. Hopefully, she'll be going home next Thursday. Now, that may sound like great news but it's not. Melissa qualifies for some extra home services because of the severity of things but she's not sure if she will implement them at this point. I just wanted to let you all know I spoke with sweet Melissa. ~Karen

One of our wonderful dinet peers brought it to my attention it would be wise to delete some of Melissa's personal info due to dangers of the internet and I accidently deleted the entire post. Arrgghhh....I belong in a group home. Again, it was a real pleasure meeting Melissa's parents. Mom was quite entertaining, especially considering the circumstances. I had wished I made them perogies beforehand but wasn't feeling well myself. Next time. Our sweet Melissa is a sick cookie. Tubing and bags of IV stuff everywhere. In short, the doctors are bewildered and are trying to find a way to keep the sepsis from returning. I thought I'd get a better idea of things by visiting her but that's not the case. It's as if everything is at a stand still. This is a quote from Melissa's business card that I thought was comforting. "No matter what the weave on this side of the cloth looks like, God's creating something beautiful on the other side."from: Courage in Young Adults with Long-Term Health Concerns. ~Karen xoxox

Melissa update: see Karen's last posting.

I have unbearable/ inappropriate fatigue. Is anyone on medication that helps with fatigue? If yes, please reply with short answers. I know this is a redundant question on this forum, and yes I did a search before posting. LOL *Addendum March 23, 2007 I feel so lousy I can't help but think something else is wrong with me. Perhaps a little paranoia? I'll have good days and then bad days. ??? Go figure. Is it my POTS or immune deficiency? This 'stuff' is so complex.

I was told by my doctor if mono was the culprit for my POTS it would have happened shortly after the mono viral infection. Mono caused my immune deficiency, then repeated infections caused POTS. Of course, this is only speculation by the medical community, but it makes sense considering my history.

This should be addressed on a case by case basis. I am in a year long clinical study for my immune deficiency. My doctor is trying to get a product approved by the FDA. Since I am not able to work I was able to participate in the study. Also, since I am not able to work I feel as if I'm contributing at least something to society as well as helping my peers and researchers. To answer your question...if you go off your meds it will be rough but are you able to bounce back once you start taking them again? Are you willing to feel lousy for a few weeks to help? This year long study was a huge committment and I thought about it long and hard.

Not to sound like a smart alec but I wish losing/gaining weight were my only worries. The salt and certain meds will retain some fluid (excess weight) in your body. Addendum: Pat I understand what your saying now. I get a little sensitive/touchy at times....especially when I feel lousy. I need to learn to bite my tongue. Lemme know how things are going for you.

Last I heard from Sunfish she was going home, had a doc appt in Cleveland on Monday (not sure if she'd make it) and that she'd call a few days after that. I haven't heard from her but just left her a message. Unfortunately, just because she's home doesn't mean she's going to improve. She's lucky if she remains stable. Not to sound cynical but that's the reality of things right now. Em, sorry you are feeling like pooh. : (

Thanks for all the input on Florinef dosages. I'm going to re-adjust my dosage. I hope this may help those people who have had bad reactions to Florinef and afraid to try it again. I think I'll try 0.05 mg two-three times weekly.

Bump. Addendum Feb 2. 2007

Thanks Em. I spoke with her on Weds so I've been worrying once again. Melissa won't be able to talk? Now this is getting serious. LOL I caught your humor Em. Melissa: I was going to visit you this weekend, would it not be a good time for you? I'll leave you a voice mail. Hugs and kisses Karen

I was out of town for a few days. I spoke with Melissa last night, no news to report. Hopefully, she'll have positive to report soon. Again, she is frustrated. Thanks to all. Karen

Florinef- ?The Good, Bad, and the Ugly? I don?t post much and don?t like to write long winded post but I?d like to share my Florinef story. I?ve been on Florinef for over a year now. -June 2006 thru December 2006: -June: dx?d with POTS, began 0.1 mg Florinef daily. -August: tachycardia increased rx?d Nadolol 10 mg q.d. (Heat related?). -Sept: Florinef related cranial pressure and three anxiety attacks. Rx?d Lyrica and Midrin for pain, Xanax for anxiety. Increase Nadolol to 10 mg b.i.d. to possibly decrease cranial pressure. Called Dr. Kevorkian?never returned my call?.LOL -December: discontinue Florinef due to cranial pressure. January 2007 thru June 2007: -January: Discontinued Florinef , BP 68/40 , severe fatigue and weak. -February: Neuro informed me to ?play around? with Florinef dosage and give each med change at least 3 weeks to see if the new dosage is working?and to d/c or add one med at a time. -Feb, Mar, April, May: On and off Florinef, doses varied from 0.1mg every, every other day, 0.05mg daily, 0.05 every other day. -June: Severe cranial pressure. Stopped Florinef again. Yearly update: I felt one of three ways?. 1) Weak, fatigue, low BP, and high pulse. (High pulse, weak legs) 2) Severe cranial pressure. Severe enough to want to die. 3) BP and pulse good, but anxiety attacks. (Adrenaline rushes??) 4) I am a bloated pig from the Florinef. I can skip a dose of Florinef and lose 6 lbs in one day?.if that gives you an idea of the amount of excess water retention. July 2007 thru Aug 2007: -BP dropped again dramatically. Began Florinef?seems to take awhile to get into my system?? June & July was a very rough month. -August: Started using table salt instead of salt tablets/veggie broth. BP is higher, pulse ok?..for now. *NOTE: Pulse may be a bit high but if my bpm?s from supine to standing is under >15-20 bpm I am feeling pretty good. I?m a document freak. BP > 3x?s daily, symptoms such as headache, weakness, fatigue, med times, med changes are all listed daily on a spreadsheet. I am curious if table salt is absorbing into my system better than salt tablets?

I spoke with sweet Melissa around 4 pm today. Her fevers are under control and she is sleeping better. They will be discussing the possibility of a tranfer to Univ. of Michigan due to better methods of gastro testing available. She had a rough time with her colonoscopy on Monday... in comparision to previous ones. The results were good. The medical staff are fully aware that once she's off the antibiotics the fevers will come back. She's still a sick cookie. Love ya Melissa, and thanks to everyone on this board. ~Karen

Spoke with Melissa a few hours ago. No news to report.....Dancing Light summed it up for the day. I just wish there was something I could do to help her. She's an incredible person. My thoughts are with you Melissa. I worry about you!!! BTW....loved your kitty with your Croc's. ~Karen

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