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What does a seizure look like? Is this one?
I don’t know where to post this, and I hope it reaches the right place. The basic question is what does a seizure from Firdapse look like? There is NO data anywhere on the symptoms of a seizure. Catalyzt and my specialty pharmacy will not discuss it.
I was diagnosed with Waldenstom’s Macroglobulinemia (WM; Non-Hodgkin’s Lymphoma) and after 2 years have become seropositive for the P/Q-type voltage-gated calcium channel antibody. My antibody level is considered low (0.08 ng/L), but I have clear symptoms. Since WM is a cancer with uncontrolled IgM secretion it is possible other antibodies can be in the mix. Incidentally, Rituxan is the front-line treatment for WM!
Anyways, I started Firdapse, and saw a definite benefit from it. However, 3 weeks into the treatment I ended up in the ER with the following; It started with slowly passing out on my couch. I passed in and out of consciousness. I could not wake up and walk, and I ended up vomiting. I was barely aware of my surroundings and was taken to the ER. There I continued in and out of consciousness — awake one moment than gone the next. I knew I was not conscious because I could feel myself suddenly awaken and sense my surroundings or talk to my wife. Then I would be gone again. The period between waking and unconsciousness was rapid.
I could not move my arms and legs. My arms had no power and I could not lift them. My body has lost ability to move. I then developed a sensation of severe chest pressure. Like someone was pressing my chest to try and get all the air out of my lungs. This would happen repeatedly on-and-off. At this time my body — arms and legs — would stiffen and I would become kind-of rigid. This sensation increased with time along with the passing in and out of consciousness.
I was finally given Valium (IV) and that quickly brought me out of my episode. All of this lasted for hours and I am just pointing out the features.
Was this a seizure?
I would very much like to get back on Firdapse since I am totally unable to move around without it. But since it was deemed that the episode could be a seizure, I have to stop. I am back to living on my couch.
Has anyone — unfortunately — experienced a seizure on Firdapse? It is like an epileptic seizure? I found an article on WebMD that outlines my symptoms exactly as a seizure on Firdapse. Here : https://www.webmd.com/drugs/2/drug-163812/firdapse-oral/details
- Muscle twitching, jerking, spasms, tremors, or other uncontrolled movements
- Stiffening of your arms and legs
- Feeling anxious, nervous, confused, or a sense of dread
- Feeling dizzy or lightheaded
- Falling or losing consciousness.
I did not have the muscle twitching or spasms. But the other symptoms I clearly had.
I am confused, and any input would be immensely appreciated.
Thank you all!
webmd.com
Firdapse (amifampridine): Uses, Side Effects, Interactions, Pictures, Warnings & Dosing - WebMD
Find patient medical information for Firdapse (amifampridine) on WebMD including its uses, side effects and safety, interactions, pictures, warnings, and user ratings
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1 Reply
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Hi there!
First, I am so sorry you are going through this!
Unfortunately, I cannot tell you whether those symptoms were a seizure or something else.
I know you went to the ER, but have you had a discussion with your neurologist/LEMS specialist about this?
I would say it’s likely that you may not be able to continue with Firdapse as it isn’t worth the risk, even though you received a lot of benefit from it. With that being said, it is really up to you and your neurologist to decide together.
Have you tried any other treatments for LEMS yet? There are many other options like IVIG, mestinon, Rituxan, and cellcept.
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