What does a seizure look like? Is this one?

[Ashley]

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.

[Ashley]

Hey @PSS I just wanted to follow up with you! How is everything going?

[PSS]

Thank you for asking.

Things have gotten a little worse. Even after stopping Firdapse, I continue to have episodes at home, which are responsive to Valium, and I am mostly in bed. I took pyridostigmine till now that has no real help. I am now slated for IV Ig infusions. I do not take to infusions well — my cancer immunotherapy was full of adventure to say the least. and I am quite anxious about going through the prolonged infusions. Side reactions are quite common with me.

I wonder if there is feedback from patients who have taken IV IgG as a treatment for LEMS.

Exertion (walking), hot weather, post-sleep/just waking up, after eating/post-prandial — these are the most common times I get the dizzines, pre-syncope/syncope, and chest pressure, in that order. Once I reach chest pressure I know it is time to take Valium.

Like other mentions in the news, I would like to note that I am a case of paraneoplastic LEMS where my primary cancer was Waldenstrom Macroglobulinemia. Of course, given hindsight, I do not know if WM precipitated the LEMS or LEMS preceded it. Given that LEMS is an abnormal B-cell antibody disorder like WM, the relationship is interesting.

I am really struggling to cope with the “side effects” of the LEMS. Surprisingly, my neurologist is still quite reserved about outright saying I have LEMS, even though 3 separate blood tests found significant levels of the VGCC antibody and my symptoms (including ER trip) are quite clear in their presentation.

I think losing control over one’s freedom of movement, and the difficulty of explaining what gaining others’ understanding of the physical symptoms of LEMS are very depressing.

Again, thank you for checking back.

[Ashley]

Hey @PSS

I am SO sorry things have gotten worse for you!!

I have been getting IVIG since 2015 and it has been a LIFESAVER for me!! We have a lot of LEMS patients on here who receive IVIG as well!

Do you know when you will be starting? My best advice is to stay as hydrated as you can before and during the infusion! Many of us experience headaches as a side effect and the hydration really makes a difference!

I’ve listed a few links about IVIG that you might find helpful:

What to Expect with IVIG Treatment for Lambert-Eaton Syndrome (LEMS) – Lambert-Eaton News Forums

IVIG and Plasmapheresis – Lambert-Eaton News Forums

From the symptoms you are describing, it sounds like you may have autonomic dysfunction or POTS as well- are you familiar with these? They are both pretty common with LEMS. I have POTS as well! A beta blocker has really helped me with some of my POTS symptoms, but you would need to see a cardiologist to get diagnosed!

Here’s some info on dysautonomia and POTS:

What is POTS? | Standing Up to POTS

POTS Cheat Sheet | Standing Up to POTS

Do you think you could get a second opinion? I’m glad that your neurologist is willing to move forward with IVIG even if he is being slow to officially diagnose you.

I know it is quite an adjustment to lose some independence and to be able to explain LEMS to family and friends. We are here for you! We’ve all been there and go through the struggle every day!

Every month we have a zoom “support group” and we would love to have you! This month the meeting will be August 22nd at 5:30 PM EST. I’ve included the link below that has the dates for the rest of the year and the link to join us!

2025 Zoom Social Dates – Lambert-Eaton News Forums

I hope you will find this helpful! That’s what I’m here for! 🙂

lamberteatonnews.com

Just a moment...

Just a moment...

[PSS]

Hi Ashley,

Thank you for your message and support.

Well, I am arguing with my insurance who does not see IVIG as ‘medically necessary’. Unfortunately, my neurologist is not very good with notes. My seizure is barely mentioned. Though I asked him to write an appeal letter and he did do so promptly.

re the POTS. Yes, I have been diagnosed with cardiac-related dysautonomia, and that is what pushed me to seek a neurologist specialized in dysautonomia. He was thoughtful enough to do a paraneoplastic panel and found the LEMS antibodies. I am a cancer patient.

I think all cancer patients should get this paraneoplastic testing. I think may autoimmune diseases are hiding in plain sight.

My health is just a pain. I hate to complain, but about 3 weeks ago I got a cold — and man, it has hit me really bad. I am still going through tremendous pain, and in bed mostly.

[PSS]

PS: A question for you: What would be the best place that deals with LEMS? Is it Mayo? I feel I need a better look at me…….or maybe I’m just overly concerned.

[Ashley]

Hi @PSS

Sorry for the late reply on my part, I didn’t get a notification!

Have you heard back from your insurance regarding the appeal? Do you know if your doctor attached any studies about LEMS and IVIG to the appeal? If not, I would recommend sending articles as well!

Here’s a couple you could send:

Recent Advances and Therapeutic Options in Lambert-Eaton Myasthenic Syndrome – PMC

Efficacy of intravenous immunoglobulin for treatment of Lambert–Eaton myasthenic syndrome without anti-presynaptic P/Q-type voltage-gated calcium channel antibodies: A case report – ScienceDirect

IVIg in myasthenia gravis, Lambert Eaton myasthenic syndrome and inflammatory myopathies: current status – PubMed

I am glad your neurologist ran the paraneoplastic panel! I also think any patient with cancer should have the labs drawn, autoimmune diseases are sneaky!

I’m so sorry to hear that you were/are stuck in bed! Colds knock me down too and it always takes me longer than expected to recover so you are not alone there. Are you still feeling bad?

As for health centers, I’m not sure which would be the best. Where are you located?

I’ve heard good things about John Hopkins, but there are a few hospitals that have a myasthenia clinic specifically. I know Cleveland clinic has one as my past neurologist moved up there a few years ago! Mayo clinic would also probably be a safe bet!

[PSS]

Ashley,

Thank you so much for your responses.

The appeal worked — so I am OK for the IVIg. The doc’s letter was detailed about the reasons than his clinical notes !! It’s for this reason that I find him quite lackadaisical. A gets me a little bugged.

I am now OK to go for the IVIg but I cannot come around to make the decision. I don’t know if I want all of these symptoms again: fatigue, headache, muscle ache, chills, and migraine, nausea, weakness — when I am already in that state from my dysautonomia and other issues. To think that I will be in bed again trying to fight these effects is very demoralizing.

Are the side effects continuous or do they go away after a few days? Do they remain for weeks?

Sorry, I know you are not a medical expert, but it is just tough to get answers.

[jennifer-jeanne-kim]

Hello. I am not a doctor. If you have not had a seizure before starting Firdaspe, then you don’t have a history of seizures. When dosing Firdaspe, each person can tolerate a different dosage based on their metabolism. Some can’t tolerate it at all. Some, like me, with a high metabolism, after careful consideration from their doctors and pharmacists, are on more than the FDA-approved amount per day.

Dosing layers: meaning if you take 20 mg and take another 20 mg “x” hours later, some of the first 20 mg will still be in your system. This is why I use alarms on my phone. It is possible to have a seizure when figuring out what dosage is best for your body, and thus it is important to talk with both your doctors and the pharmacist and pay attention to your body. If you haven’t eaten food, I find the medication is more impactful. In my case, I do not change my dosage based on whether I have eaten or not.

That being said, if you report a seizure, it can make it difficult for the insurance to continue covering Firdaspe. If they find out, your doctor can write a medically necessary letter explaining that it was a one-time incident and not a history of seizures.

I say this, not being a doctor, and also noting that some patients can’t tolerate Firdaspe at all.

In my opion, if it is a one-time event and related to dosing, it’s about figuring out dosing, versus stopping the medication. Go directly to a doctor you trust to keep your confidence. I don’t want to give medical advice, but I do want to share. If you can tolerate some Firdaspe and it is helping you, one event “may” not mean you can’t tolerate the drug. It may mean the dosing or timing of the dose was not correct for you.

[Anngail Norris]

I have had several episodes that I thought were seizures, but were not confirmed as such by tests and my doctors.

In November 2022, I woke up having to go to the bathroom and could not move anything, even my pinkie finger. I called 911 and went to the hospital. In the hospital I have lots of blood work, CT scans, and an MRI, all of which were normal. I had Covid a few weeks prior to this, and thought this could have contributed to the situation.I was given a lot of Ativan and was going in and out of awareness. It was decided that this was not a seizure but I was put on Keppra, 750 mg twice a day, which I still take.

Nothing happened again until last week. Two nights in a row I had what I thought were seizures. I started shaking uncontrollably from head to toe and it lasted for about 45 minutes. Once early Sunday morning and then twice early Monday morning, which is when I called 911. The ER doctor did not agree that it was a seizure. I never lost consciousness. I saw my neurologist on Wednesday and had lab work completed and will be having an ambulatory EEG next week. I also spoke with the pharmacist at Anovorx/Catalyst questioning if it is possible to have too much Firdapse that might cause this. I have not had an episode since the last one.

The frustration is that so little is known about these rare diseases no one can say definitely what the causes are. Maybe I had a virus and this was unrelated to either LEMs or Firdapse. Who knows. I am hoping the EEG will provide some answers.

[Ginny]

I can’t speak to whether you had a seizure. If you went to the hospital, the notes from that visit should address that. Has your neurologist had an EMG performed on you? That’s really the most important test in determining whether you have Lambert Eaton.

After switching to Firdapse, I had 7 seizures between December 2022 and August 2024. I took 90 mg of Ruzurgi, and even when I got up to 90 mg of Firdapse, I didn’t receive the same effect as 90 mg of Ruzurgi. Shortly after getting up to 90 mg I had my first seizure accompanied by a fractures sternum. My March 2024 seizure led to a fractured clavicle and surgery.

Firdapse isn’t as effective as Ruzurgi for some people and some are allergic to it. According to the FDA approvals, Firdapse has a half life of 1.5-2.5 hours while Ruzurgi has a half life of 3.5 – 4.5. Obviously, the difference between the two medications is huge as far as how long each lasts in your system.

[PSS]

@Ginny.Boynton

@jennifer-jeanne-kim

@Anngail Norris

Thank to you all for providing your experiences. It is so valuable and is one of the reasons I posted this topic so that people can post their experiences on Firdapse especially with apparent seizure experiences that other people can tap into, and are sadly not described in any literature including the drug pamphlet that comes with it.

I was quite upset when my wife called from the ER to Annovo Pharmacy and the pharmacist refused to even engage in a discussion of what is their reports on what a seizure looks like. They have done the trials — I presume — and they know at least of 1-2 cases where a “seizure” was described. There is no literature on Firdapse and the anatomy of seizures.

Each of you does describe a common feature that is also referred to on WebMD — loss of awareness, or loss of consciousness. One more of you mentions muscle rigidity and not being able to move. Very importantly epileptic seizures do not last more than a few minutes — unlike the 2-3 hours I went through. These both happened to me. Of course, taking Ativan or any other psychotropic drug can change the threshold of responses, but for me Valium actually stopped the “seizures” within 30 mins of IV injection, and Valium is a frontline med to stop seizures in other “generic” cases.

I did reveal everything to my doctor and the pharmacy, but I still have the option to go back on it. So I do not think the company wants people to stop taking Firdapse if they don’t want to !!!! Not surprising.

@Ginny.Boynton How did you fracture your bones? Was it a direct result of violent shaking or you had a fall? This would be helpful information.

@Anngail Norris Most doctors think of seizures as of the ‘epileptic’ kind. This is a very incorrect assumption. A long history of seizures in the literature very particularly describe cyclical loss of consciousness and awakening to be brain seizures.

So it is very sad and unhelpful that the Firdapse documentation does not describe at least some symptoms that their clinicians have observed — they cannot have concluded that it causes seizures without having seen it do so.

@jennifer-jeanne-kim The description about half-life is also something I was told. As someone who does drug discovery and development for a living, this is unfortunately an irrelevant fact given by Catalyst when asked the specific question of what are the symptoms of a seizure. Indeed, it heightens the fact that the seizure can last as long as sufficient drug is in your system, which is something they must know about or they wouldn’t be beating around the bush.

All-in-all, we should as patients conclude that the experiences we describe here is in line with a non-classical seizures of the CNS (central nervous system). The Firdapse document does state that seizures can happen in patients WHO HAVE NO PRIOR HISTORY of seizures. So clearly this is something induced by the medication and it requires a clinical description. For someone who has not had a seizure before, and who looks unconventional to a doctor who has no prior guidance, allowing the seizure to continue could endanger the patient’s life. Do we assume that we just wait 2-3 hours for the drug level to drop and assuming the seizure will fade because we don’t want to call it a “seizure”, or we get the patient out of the danger zone as quickly as possible?

TL;DR: In my opinion, if you are losing consciousness or even awareness, having frozen limbs unable to move, or some versions of these, yet seem to appear to be awake you need immediate intervention for a seizure. My loss of consciousness and awareness was rapidly intermittent, and I was coherent in between these episodes. However, the frequency and intensity quickly started going up as time went by, and I began losing coherence.

[Ginny]

Both of my incidents where I broke bones were related to falls from seizures. The first was a fractured sternum where I fell into an end table. The second was a fractured clavicle when I fell to the floor.

Anovo is not capable of giving you medical advice. It’s just a distributor of medications and won’t be able to assist you with any questions beyond distribution. It wasn’t part of any clinical trials for approval of Firdapse.

Half life of Firdapse as per FDA approval is 1.5-2.5 hours while Ruzurgi is 3.5-4.5 hours. Since I took 90 mg of Ruzurgi, my dosage of Firdapse was increased to 90 mg, but then I had my first seizure. Even at 90 mg of Firdapse, I didn’t feel as well nor as mobile as I did on the same amount of Ruzurgi.

I followed up with an appointment at Mayo with a LEMS specialist in August 2024 who confirmed my LEMS diagnosis and said that my use of Firdapse was going to be a balancing act – too much = more seizures. Taking the amount I currently have to – 80 mg (6 doses per day – two 10 mg. doses and four 15 mg doses) is insufficient in comparison to what I was able to accomplish and how I felt on Ruzurgi, but because of the difference in half life and seizures, I can’t take as much Firdapse as I would need to.

[bere]

Regarding your question of Firdapse seizure. You stated that you DID NOT experience

• “Muscle twitching, jerking, spasms, tremors, or other uncontrolled movements” which are not atypical of many types of seizure. Most (or all) of the remaining symptoms that you experienced are VERY generic in terms of a VAST number of acute episodes originating in NON-seizure origins.

Must be careful in assigning ourselves a diagnosis, even from online medical sources because many people find/associate with SOME of the symptoms and thus make a self diagnosis without the background to know the salient more distinct symptoms as opposed to more general symptoms. Pretty much most acute serious ‘attacks’ will have shakyness, anxiety, fatigue, somnolence, et al as sequella that are also symptoms often described with many diseases. Takes a while (experience) for young physicians to separate generic but understandable sequella from the more definitive symptoms of a specific disease.

I would suggest your experience IS related to the firdapse but not as a seizure…which really sucks if it is such that you can’t take a Rx that is helping. A very difficult dilemma.

Good Luck

[PSS]

Here is some research into types of seizures that I did in reply to your answer. Textbook knowledge of types of seizures (full definition abbreviated by me):

Focal Onset Seizures and Generalized Onset seizures:

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