I had made miraculous progress after starting on Savella. From being barely functional, I could start writing again. My head was clearer. The pain was less. And I felt more like myself than I had in years. Friends told me that it was as if the old Jeff had gone away and now he was back.
My doctor was amazed at the progress. He had never heard of anyone coming as far on this drug as I had.
Then I began to notice problems. I was quickly out of breath when walking. Sleeping was becoming more difficult. This seemed to be primarily because my heart was racing. And it got worse. It felt like I was constantly running a marathon.
I had read that this could be a side effect, and so I went and read some more. Many people were quitting the drug because they were unable to get their hearts under control.
Watchdog group Public Citizen petitioned the FDA to pull Savella from the market. They claimed it was dangerous. They claimed that it was ineffective. I knew better on that later part. It worked very well for me. I got my life back. If I gave up Savella, my only real choice would be Lyrica, and that did nothing for fibrofog, my most serious symptom, the one that robbed my of my identity and made me completely unable to function in any useful way. I was not willing to give it up without a fight.
I did more research and learned that Public Citizen was also telling people not to use Lyrica because its risks also outweighed its benefits. Perhaps they need people on their committees who have these diseases before they decide these things. I was less concerned about risk than function. If my options were between a few years of clear headedness, or a long life of confusion, disorientation, horrible pain, and a feeling of utter uselessness, it would not take me a millisecond to decide. Suicide is the number one cause of death for people with fibromyalgia, and I absolutely understand. When your symptoms reach a certain threshold of misery, life is unbearable. If I experienced the pain of the rack or the vortex (See Words for Snow entry) constantly with no hope of relief, I would not hesitate to do the same.
I went back to see my doctor. They hooked me up to the EKG. He looked at the results and turned a little white. I had significant tachycardia.
I was lucky in that I had the right doctor. He said that normally he would pull me off this drug immediately. In light of the amazing transformation it had accomplished for me, though, he was willing to work with me to find something that would lower my heart rate. I made it very clear I had no interest in going back to the way I had been. I was willing to take any risk.
After some trial and error what we came up with was 100 mg of Metropolol twice a day. We had tried a once a day slow release version but it petered out too early and my heart would start racing by night time.
My heart still races from time to time, especially if I am late taking the second dose. I have been on Savella for over two years, and the improvement I had has been maintained. It is not a cure. What it did change was me being in bad shape most of the time to me being in bad shape some of the time. That is a huge difference, because before I could not get anything done. Now I am moving forward with some pretty big personal projects that I hope will put me back on the road to actually making money again.
Working at a normal job with fixed hours would still not be possible. Sometimes, either from fog or pain, I am unable to drive. The fatigue hits me and I am down for the count. Some days I just have to stay in bed. But overall, I am able to do so much more than I was. I feel like myself most of the time, and I feel like I have a life. That is huge.
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