corina Posted May 21, 2015 Report Share Posted May 21, 2015 Yayy yayyyyy I feel excited for you!!! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted May 21, 2015 Report Share Posted May 21, 2015 Thinking of you Sarah. Quote Link to comment Share on other sites More sharing options...
Becia Posted May 21, 2015 Report Share Posted May 21, 2015 Hope you're doing well. Quote Link to comment Share on other sites More sharing options...
Nymph Posted May 21, 2015 Report Share Posted May 21, 2015 Awesome, Sarah!!! I am so excited for this to work for you!hugs and prayers your way,Nicole Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted May 21, 2015 Author Report Share Posted May 21, 2015 Thank you everyone... This community is truly full of support and encouragement when one needs it most. my heart rate dropped to 110 from 160 about 40 min after taking it but my blood pressure is spiking so we are adding back on a low dose beta blocker and clonidine. Possibly methlydopa..Heard of it but never taken it. I think Grubb uses it for his hyper's.Again, thank you all for your kind words. I'm keeping them with me!Sarah Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 21, 2015 Report Share Posted May 21, 2015 What's it feel like to not be in an aerobics class all the time? Lol! So glad it is showing promising signs! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted May 21, 2015 Author Report Share Posted May 21, 2015 katie! For the first time today, a doctor asked me to take three deep breaths.. and I actually could do it. I never anticipated how emotional this would be for me.Imagine if I'm able to walk up a flight of stairs for the first time I can remember..Talked to my EP from CC today and told him I was tolerating the dosing and doing well, despite bp challenges.. seems to be the tricky part. My numbers are ranging from 140-180 sys/85-110. Final deision: Low dose propanalol then titrate up if I need it. I have to take PRN clonidine if my #'s are over 180 systolic and then I fall into a spike/drop situation also. So complicated.Anyone thinking of trying ivabradine now that its been approved? Again, thanks for the concern and support! Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 21, 2015 Report Share Posted May 21, 2015 Awesomeness! I'm doing a little chair dance for you (Stupid thunderstorms don't allow for proper upright dancing today!) Lol! Quote Link to comment Share on other sites More sharing options...
Becia Posted May 21, 2015 Report Share Posted May 21, 2015 Given how the past two weeks mine hasn't dropped below 150 even laying down, I'm up for it. My next hurdle is getting my doctors on board, they are a fickle bunch. I gotta make it through this next surgery, and then maybe I can fight that battle better. Quote Link to comment Share on other sites More sharing options...
Clb75 Posted May 22, 2015 Report Share Posted May 22, 2015 Good luck Sarah, I hope you see some improvements! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted May 22, 2015 Author Report Share Posted May 22, 2015 Thanks to the three of you!!!Katie -- just wondering, do you think we could add that dace to our very own Protocol - The K&S Autonomic dysFUNction chair program?Becia,Fight the fight, your worth it! Thanks for the support.. I hope you are doing well. Keep getting up every day and saying to yourself "today will be a better day", because who knows?? it very well could be.. Hang in there! Light at the end of the tunnel and you'll find the relief you need. I'm sitting in a hospital bed with a heart rate of 99... Change is possible!!CLB75,Thanks for the encouraging words.. I am already seeing improvements. Trying very hard not to get too excited incase this is short lived, but I have a little feeling in my gut telling me I may have found my answer! Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 22, 2015 Report Share Posted May 22, 2015 Absolutely on the protocol list....listed under "Cardiac Re-Conditioning", "Creative Outlet Therapy", and "Sometimes a Girl Just Has to Dance It Out!". Quote Link to comment Share on other sites More sharing options...
Chaos Posted May 22, 2015 Report Share Posted May 22, 2015 Really glad to hear you are noticing some benefits! Hope they can keep the BP in check as well.Sad having a disease where you can't get too excited or it may undo the benefits of the meds. Sending hugs and support! Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted May 22, 2015 Report Share Posted May 22, 2015 As always rooting for you Sarah and praying this medication will turn things around for you. So glad to hear you are already realizing some benefit. Lets be optimistic the docs can figure out how to balance out all of your medications. Many hugs, Janet Quote Link to comment Share on other sites More sharing options...
dancer65 Posted May 22, 2015 Report Share Posted May 22, 2015 So pleased you are seeing positive signs of improvement, wonderful news! Quote Link to comment Share on other sites More sharing options...
corina Posted May 22, 2015 Report Share Posted May 22, 2015 Happy news!!!! SO glad for you Sarah!!!! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted May 27, 2015 Author Report Share Posted May 27, 2015 Hi everyone,Thank you all for the support!!The conclusion: I spent a few days in the hospital being monitored while they adjusted my beta blocker and took me off my calcium channel blocker while I was on 5mg am/pm of Ivabradine. I had a really bad reaction coming off the propranolol.. my anxiety and migraine's both became pretty unbearable. I haven't been off the propranolol in at least 7 years so I haven't realized how beneficial not just for HR control its been. They put me back on it almost immediately in the hospital and I feel almost better symptom wise.The Ivabradine has been wonderful for me. I left the hospital with a HR of 97. I have had a few spikes but for the most part I haven't gone above 120 while standing. I haven't noticed any side effects from it.. I am still taking 5mg in the morning and 5mg at night. Id guess my resting HR is about 100.. its pretty incredible.Hopefully now that's its approved in the US, more doctors will consider this as an option! Quote Link to comment Share on other sites More sharing options...
Nymph Posted May 27, 2015 Report Share Posted May 27, 2015 Awesome! Quote Link to comment Share on other sites More sharing options...
Becia Posted May 28, 2015 Report Share Posted May 28, 2015 So glad to hear this! Quote Link to comment Share on other sites More sharing options...
Chaos Posted May 30, 2015 Report Share Posted May 30, 2015 So happy and excited for you, Sarah! Sure hope it continues to do well by you. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted October 1, 2015 Report Share Posted October 1, 2015 Any new updates? I just started it 3 days ago but at home from sample my cardio gave me. I am not on anything besides ivig. I am taking about 1-1.5mg/day to reduce side effects. In a few days I will bump that up to 1-1.5mg 2x/day. Then a week after to 2.5mg 2x/day. Hopefully that will be enough for me. Be careful when driving because blinding lights can be an issue I read.. So far I feel fine no change in HR yet. I have a slight headache but I can't say if it is related.. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted October 1, 2015 Author Report Share Posted October 1, 2015 Hey Rich, Doing great w/ the Ivabradine. It was certainly worth the wait in my case. It keeps my baseline HR at around 95, which is something you know I really struggled with for a long time. I still have the hr increase w/ postural challenges, (ie supine to sitting to standing) and can increase up to 140 bpm, but that was a regular day for me before this medication. I felt like my heart would just pedal off. Im pretty positive that is the IST. It's gone now. I've started a different exercise regimen, I'm building up slowly and steady. I'm bike riding and doing cardio a few times a week. It's a weird feeling for me to be off my recumbent bike after all of these years. What an amazing thing it would be to coach again. The luminous phenomenon that you are talking about, the brightness that can occur, is because of the iF channel and connection to the retina. It does affect me at times, but I put on my sunglasses and its really not a big deal. Other than that Ive got no side effects at all, it'll be 6 months that Ive been on it at the end of October. I'm doing a study right now on the effects of Ivabradine on HR response to exercise. How is IVIG going for you? Been hoping onward and upward for you.. Hopefully this medication will be successful to your therapy! http://europace.oxfordjournals.org/content/13/3/427?ijkey=3e3d4045e9ac13f7b8ea2ad5de4bbb2b78479796&keytype2=tf_ipsecsha http://europace.oxfordjournals.org/content/13/3/306 http://content.onlinejacc.org/article.aspx?articleid=1358180 Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted October 15, 2015 Report Share Posted October 15, 2015 So happy to hear that! I'm still on a low dose. Today Was my first day on 2.5mg 2x/day. What does did you need to achieve your lower HR? So far on 2.5mg/day my HR hasn't lowered at all after a week.. But so far no side effects.. I never have done the exercise thing because of my breathing problems but it would be amazing to start that. Did you have breathing problems because of your IST?I stopped the IVIG after the second month to try the Ivabradine and I have a superficial clot where the IV was. Which isnt dangerous but I would rather let that pass before starting again. They say it could be due to the type of iv catheter they used.. Is your baseline HR standing, sitting or laying or an average for the day? Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted October 17, 2015 Author Report Share Posted October 17, 2015 Rich,My HR of around 95 is average for the day, based on a 48 day monitor. Id be interested to wear the 30 day holter again out of curiosity. I was started on 5mg bid. I responded fast to the med, but I think that most titrate up. I never had breathing problems, other than catching my breath because of the tachycardia. I wasn't able to walk up a flight of stairs previously (12) and realized I can now do that without gasping. Think its a combination of building my exercise tolerance back up and the medication. I've still got an exercise intolerance though, I can't seem to push myself further than where I'm at now with months of reconditioning. I get reminded of the very fine line with an instantaneous increase in HR, dizziness, weakness, and confusion.I'm sorry to hear about the superficial clot. Bummer. Did you stop the ivig b/c it can interact w/ the ivabradine or b/c you wanted to see the full effects of it off the ivig?Cant remember if you had the blood volume testing done by any chance? When I went to CC last year I had it done twice. Anyway,on top of discovering the low blood volume, we also discovered just how anemic I was, which I had apparently been masking in basic CBC's. Since then, I've rec'd IV Iron Infusions which has also helped the tachycardia. Take care, Sarah Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted November 18, 2015 Report Share Posted November 18, 2015 I stopped IvIG to see how ivabradine would work on its own and maybe help with ivig after it started working. I had worked up to 7.5mg once a day (for 4 straight days). It still didnt lower my HR even a little bit, but I had no side effect. The doc/nurse wanted me to work my way up to 7.5mg 2x/day.The on the 5th day I messed up my sleep and didn't take my dose. I had extreme weakness, but when I started my dose again it didn't help. So i have no idea if that was the reason for the weakness, but I ended up in the hospital for a few day and they told me I could stop ivabradine just in case, that there isnt withdrawl. So I stopped it but that didn't help even after 9 days off it.. I see the cardiologist tomorrow Quote Link to comment Share on other sites More sharing options...
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