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8 months of unexplained fits - please help

8 months ago I woke up after attending wedding and had what I can only describe as a conscious seizure: I remained awake but the muscles in my stomach started spasming, I started grunting and drooling, my arms and legs shook and kicked, and my eyes alternately closed tight or opened. I thought it was just a weird incident. Later that day I went on a walk and my legs went out under me, my eyes closed and I couldn't get them open for about 10 min. Decided not to go to ER. About a week later I had a similar incident. Seemed to be precipitated by tingling in hands and bad pain in chest. No anxiety, no racing thoughts that might otherwise indicate a panic disorder.

Over the next few months I start to develop cognitive problems - memory gets worse, I drool a lot, I get intermittent "wiggles" in my hands, chest, and head, and my speaking is affected. Fits still continue. I have started to see a doctor who goes through the process of referring me to cardiologist and neurologist. I have a bad fit and go to ER, CT comes back normal. Go to cardiologist, EKG and echo come back normal. Go to neurologist who sets me up for a 1 hour EEG. I'm sleep deprived and during the hyperventilation I get a small fit - same feeling with stomach contracting, legs kicking, grunting, drooling, and strange shock like sensation behind eyes. I am conscious and able to respond during it. They capture it on video, EEG is normal and it is suggested I have PNES. Before leaving the EEG technician tells me that I am doing too much yoga and I have been possessed by demons -- WTF??

I see the neuro who tells me definitively I have PNES. I say we have only met twice and he has not mentioned anything about the other symptoms. I say I really don't think that it is purely psychogenic as I have noticed triggers and none of them seem to be dependent on mental state - I have no history of trauma and haven't had problems with anxiety or depression for some time. He tells me to get a second opinion. I spend a lot of money to see a psychiatrist who tells me most of the symptoms I'm presenting seem neurological. I try a couple antidepressants and antianxiety meds to no effect. MRI is ordered and it comes back normal. Eventually she puts me on a minute dose of lamictal (25 mg) which seems to help with a lot with some problems- drooling, memory, and balance but when I try to increase I get massive mood swings. Fits still continue.

Here are the triggers I have noticed:
-Any continued manipulation of diaphragm where the spasms happen: deep breathing, laughing too much, projecting voice
-Physical activity - lifting (worst trigger), walking, standing for too long, sex
-Deep relaxation: meditation, waking up and falling asleep
-Extended concentration: trying to multitask or think with shapes and numbers, speaking in other languages

After each fit I feel seriously disoriented. I see yellow spots and little "flashes" during the day before and after they occur (afaik you don't see spots AFTER a seizure), ophthalmologist says eyes are normal. Just tired all the time.

I am seeing a new neuro who ordered a CFS but it has been delayed to to virus outbreak. I'm also going in for psychological testing although the clinical psychologist I spoke to also says she thinks it is neurological. Any insight would be appreciated, my life has been put on hold for 8 months and I'm constantly vigilant about having fits, especially out in public.

Thank you in advance

Comments

Hello. I am a licensed

Hello. I am a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. I have experience treating people with with PNES as well as the psychological aspects of epilepsy. However, nobody here can tell you that what you are experiencing is a seizure or PNES or something else. Actually, from a clinical perspective, it would be counterproductive for your healing for a psychotherapist to tell you that they think that your seizures are “all in your head”. Only a neurologist that has been able to observe your events while you are also under EEG monitoring, preferably video EEG monitoring and hopefully has captured all of your event types of you have different types, can make that diagnosis. Even video EEG monitoring, although it is the gold standard, is sometimes flawed in that the EEG machine doesn’t always pick up the abnormalities, but that’s why it takes a skilled epilepsy specialist to make the observation by watching the video because there are also indicators of PNES that can help lead to a differential diagnosis. Even with all of these things considered, some diagnoses are wrong. Most psychiatrists, psychologists and other mental health professionals are not familiar with PNES and do not know how to treat it and are quick to say “it’s neurological” and send you back to the doctor. I don’t concern myself with what the neurologist says and my client’s disagreement with them. I just simply work with the unconscious issues that I identify and the result is clients who have PNES stop having their “seizures”. They often go back to the neurologist on their own, report that they are symptom free and ready to go off their medication. I find out about in a session after they’ve started this conversation with the neurologist, which usually occurs over two or three meetings and as they are working towards termination with me because they “feel better”. All in all, nobody wants to hear that they have PNES, but if you do find out that you have PNES instead of epilepsy...your prognosis is much better if you can get the right psychotherapist to help you. Epilepsy is a chronic condition, whereas as many as half of people who have PNES stop having events as soon as their diagnosis is confirmed. For the remainder of those with PNES, another half improve with psychotherapy in the first three months. I would recommend that you speak with your neurologist that you are getting a second opinion from about the possibility of an extended video EEG monitoring if your insurance will cover it. Also, here is a website that has some information on PNES including some other providers that claim to be knowledgeable in treating people who have PNES. https://nonepilepticseizures.com/  As for the technician who said that you’ve been doing too much yoga and that you are possessed by demons, while that may have been their belief and even their attempt to warn you...it was obviously advice that you had not solicited and something that hurt you deeply, which is all counterproductive to your healing. I hope this information and advice helps you. I wish you the best. 

Hi,Thank you for positing, it

Hi,Thank you for positing, it sounds like you’ve been through a lot and we are sorry to hear that you’ve had such a negative experience with your EEG technician and like Gianna stated this is unsolicited advice is not helpful. Gianna has also shared some great advice and suggestions based on her experiences. We cannot determine if you these episodes you describe experiencing are seizures, PNES or a separate issue, so it’s important that you’re continuing to follow-up with your healthcare team (that you’re comfortable with), for further evaluation. If you have not already you may want to consider seeking a second opinion at a comprehensive epilepsy center. A comprehensive epilepsy center is a group of health care professionals who specialize in the diagnosis, care, and treatment of people with seizures and epilepsy. Usually led by an epileptologist,(epilepsy specialist), who can help explore all treatment options and determine what individual treatment plan may be best for you. https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-e... . It is great that you’ve have been able to identify your triggers, this can help you and your healthcare team detected potential patterns,allowing you to modify your behaviors and lifestyle as appropriate. In addition to identifying your triggers, documenting these episodes you’ve experienced and how you're feeling in detail, (like you done in your post) will be very helpful to review with your doctors. My Seizure Diary can be used to organize your health issues, manage medications, record side effects, other therapies or personal experiences and more which can be shared with members of your healthcare team. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-... .To learn more about conditions that are mistaken for Epilepsy like PNES, visit: https://www.epilepsy.com/learn/diagnosis/imitators-epilepsy. Additionally, it's important to remember that you are not alone, and we are here to help support you. You may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline .

This is some really good

This is some really good information, thank you. It's interesting. I don't mind getting a diagnosis of PNES, in a way it is better because it means it is something not so serious, but I have been seeing a psychiatrist for 6 months now and spent a lot of money to no avail. I think it irritated me that the neurologist just decided definitively and wouldn't field any of my questions about some of the other symptoms. I don't think what is going on is seizures since I am conscious during them but they definitely look a lot like them and there are certain things that I am 100% sure I am not imagining - the colored spots, the drooling and grunting, memory problems, and the difficulty writing and typing. I remember when I went in to the ER for ovarian torsion years ago, the attending physicians told me maybe I was imagining it because they didn't feel anything in my abdomen and I had a history of depression. They were about to release me and I told them, "I think if you let me go I might die." Then they did a sonogram and found a giant cyst that had twisted up the ovary. It has always left me a little suspicious of doctors credibility, and I have met both physicians and psychologists who will "clamp down" on a belief about either your physical or mental health and no amount of discussion will sway them from their conclusion - sometimes with dangerous consequences. Some of the best insight I have gotten has been from people who have gone through similar ordeals which is why it's interesting to hear your perspective, since you both have epilepsy and treat PNES. It's also the reason I thought to ask here.My gut tells me it is neither epilepsy nor a psychogenic event but I don't think I have any choice but to do what you suggest and continue therapy and maybe ask for an extended EEG. I think the sense of urgency comes from the fact that I can't work, which sucks since I love my job, and that I keep injuring myself during the fits. I'm concerned one day it will happen on the stairs or in the kitchen and I might end up seriously hurt... if in the best case scenario therapy takes a couple more months to see change, what do I do in the meantime?

Thank you so much for the

Thank you so much for the reply. I will do what you have suggested. Thank you also for the link to the epilepsy imitators, that is very helpful. This info plus the number and links you've provided have helped me a lot. I appreciate all the info that this foundation has provided either through its articles or forums, even if I don't have epilepsy I have learned a lot about fits and seizure-like episodes in general.

Hi Rachel. I definitely

Hi Rachel. I definitely understand your frustration and lack of trust with doctors because my epilepsy started as a result of medical negligence. Without consulting with your psychiatrist as another professional who has reviewed your records and examined you, it’s impossible for me to direct you adequately about what to do in the meantime. However, based on my experience as a person with epilepsy and my experience as a certified rehabilitation counselor (an additional credential that I hold along with my clinical social work license), I would suggest that you begin talking with your psychiatrist about their willingness to help you apply for disability if you are not showing improvement in treatment. Getting approved for disability can be hard for some people, but if you do lose your job and cannot work and the medical evidence supports that you are not benefiting from treatment and unlikely to improve within a year, you may qualify. There are programs after you are on disability to help you return to work. You may even want to talk to your state vocational rehabilitation office now to see if they can help you maintain your current job before you lose it. 

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