Sharon Ley (Dilated Cardiomyopathy Post Pregnancy)
Geplaatst: zo nov 27, 2005 3:12 pm
Hello Corrij!
As you know, I've just registered and having been talking with Willie.
He asked me to direct some specific questions to you.
I was diagnosed on Oct 14, that is last month. What a shock! Apart from a couple of tachycardia episodes, I felt fit and healthy, except my heart has an EF of 25.
Started betablockers (Dilatrend) and ACE inhibitors (Perindopril) a few days after diagnosis and have been slowly building up dosage of Dilatrend. Since starting I have experienced the fatigue and light-headedness of heart failure for the first time but importantly, no more tachycardia episodes! I understand this drug can temporarily worsen symptoms so am trying to keep my mind positive. I feel worse than before diagnosis but the fact that my ventricular tachycardia seems to be under control to date means that the cardios are holding off on implanting a defibrillator and this is a big win so far.
I started some CoQ10 but stopped after a few days as I noticed I was adversely affected. On investigation I discovered the prep I was using included potassium which is contraindicated by the Perindopril.
Since then, I started taking CoQ10 (without potassium) starting 1 x 50g daily and now 3 x 50g. I just grabbed a Blackmore's oil capsule bottle as I know it's fairly decent. Since starting this CoQ10 I have much more energy generally speaking.
However, over two weeks I had about four episodes at same time of day (right after lunch) where I felt as though my power lead had been ripped out! Immediate and total energy drain. After the fourth time I went to hospital and was monitored for a few days. BP was between 90-105/55-70 and pulse generally betw 70-80. I had a few light-headed spells in hospital but later found my partner Matthew was experiencing same thing - probably a virus. Cardiologist was happy that I am stable and has maintained my dosage of Dilatrend (2 x 12mg) and Perindopril (1 x 4mg). He wants to get me up to Dilatrend (2 x 25g) so he can get me heartrate down to about 60.
I considered energy drain could be to do with digestion of lunch combined with that sleepy time of day (about 2pm) but generally I have enough energy to look after my two girls (1 and 4 yrs old), although I do have to pace myself. I can walk in the late afternoon for about 45 mins although as I'm walking with girls, I'm not pushed faster than a toddler's pace! So I wondered whether my hypothesis is just wrong. Or could it be something to do with my liver and blood sugar levels after eating a biggish meal?
Sorry to go on in such detail, I won't always be so obsessive ! I'm slowly learning about ups and downs and what is significant and what is to be expected.
My cardiologist is not against supplements but doesn't seem too excited either. He cleared the CoQ10 and I haven't asked about anything else til I get your protocols on what and how much. I'm keen to hear your advice.
I did buy some chromium (piccolinate) - is this the right form of chromium?
I was interested to read in one of your referenced articles on Selenium that adequate levels usually coincide with less symptoms of heart failure even when EF is low. My EF is 25 and I get the impression that I'm feeling better than expected. My bloods showed normal Selenium levels.
I've started reading other posts and this has been a very moving experience. There is a real sense of a family of us all going through the same. I feel such gratitude for your sharing so much time and effort! You and Willie are an inspiration. I feel positive about getting well and feel that this whole experience has already enriched my life - so far have experienced so much kindness of strangers. Whatever happens, I'll never be the same again!
Look forward to hearing from you,
Sharon Ley
As you know, I've just registered and having been talking with Willie.
He asked me to direct some specific questions to you.
I was diagnosed on Oct 14, that is last month. What a shock! Apart from a couple of tachycardia episodes, I felt fit and healthy, except my heart has an EF of 25.
Started betablockers (Dilatrend) and ACE inhibitors (Perindopril) a few days after diagnosis and have been slowly building up dosage of Dilatrend. Since starting I have experienced the fatigue and light-headedness of heart failure for the first time but importantly, no more tachycardia episodes! I understand this drug can temporarily worsen symptoms so am trying to keep my mind positive. I feel worse than before diagnosis but the fact that my ventricular tachycardia seems to be under control to date means that the cardios are holding off on implanting a defibrillator and this is a big win so far.
I started some CoQ10 but stopped after a few days as I noticed I was adversely affected. On investigation I discovered the prep I was using included potassium which is contraindicated by the Perindopril.
Since then, I started taking CoQ10 (without potassium) starting 1 x 50g daily and now 3 x 50g. I just grabbed a Blackmore's oil capsule bottle as I know it's fairly decent. Since starting this CoQ10 I have much more energy generally speaking.
However, over two weeks I had about four episodes at same time of day (right after lunch) where I felt as though my power lead had been ripped out! Immediate and total energy drain. After the fourth time I went to hospital and was monitored for a few days. BP was between 90-105/55-70 and pulse generally betw 70-80. I had a few light-headed spells in hospital but later found my partner Matthew was experiencing same thing - probably a virus. Cardiologist was happy that I am stable and has maintained my dosage of Dilatrend (2 x 12mg) and Perindopril (1 x 4mg). He wants to get me up to Dilatrend (2 x 25g) so he can get me heartrate down to about 60.
I considered energy drain could be to do with digestion of lunch combined with that sleepy time of day (about 2pm) but generally I have enough energy to look after my two girls (1 and 4 yrs old), although I do have to pace myself. I can walk in the late afternoon for about 45 mins although as I'm walking with girls, I'm not pushed faster than a toddler's pace! So I wondered whether my hypothesis is just wrong. Or could it be something to do with my liver and blood sugar levels after eating a biggish meal?
Sorry to go on in such detail, I won't always be so obsessive ! I'm slowly learning about ups and downs and what is significant and what is to be expected.
My cardiologist is not against supplements but doesn't seem too excited either. He cleared the CoQ10 and I haven't asked about anything else til I get your protocols on what and how much. I'm keen to hear your advice.
I did buy some chromium (piccolinate) - is this the right form of chromium?
I was interested to read in one of your referenced articles on Selenium that adequate levels usually coincide with less symptoms of heart failure even when EF is low. My EF is 25 and I get the impression that I'm feeling better than expected. My bloods showed normal Selenium levels.
I've started reading other posts and this has been a very moving experience. There is a real sense of a family of us all going through the same. I feel such gratitude for your sharing so much time and effort! You and Willie are an inspiration. I feel positive about getting well and feel that this whole experience has already enriched my life - so far have experienced so much kindness of strangers. Whatever happens, I'll never be the same again!
Look forward to hearing from you,
Sharon Ley