About four years ago I was officially diagnosed with PNES - Psychogenic non-epileptic seizures. Which I've had since I was a teen, though then we just called them muscle spasms as we didn't know any better. They are at times really problematic and they have become a part of the whole fibro pain circle. Fibro pain triggers seizures - seizures cause more pain.
I was wondering if anyone else dealt with them and if so if they had any advice. I read this article which did connect fibromyalgia and PNES but I'm the only person I know who has both.
My only advice really is to avoid any unnecessary stress. As emotional or physical stress is a trigger (along with getting to hot, or to cold).
Because of them I've developed an anxiety issue when I have to leave the house as sometimes I don't get a warning before they happen and I hate having them in front of ppl.
Hi FWvidChick, I have not heard of this, but tomm I am going to look into it a bit further, I’m so sorry you have to deal with this, but it sounds like you have a great understanding and grasp of it.
Stay strong & do something special for your self !!
We have to do what ever we can to keep the stress down
Hugs & many blessings
dee
OMG someone else!!! I have this. My neurologist won’t diagnose them as psychogenic despite other specialists in epilepsy using the term. I passed all psychological testing except they say it must be psychogenic because there is no other logic. I have been hospitalized for them twice. The first time for.just over a month, the second for two and a half weeks. Mine I have said feel like a full body muscle spasm that once it starts will not stop without an injection of ativan. Muscle relaxers helped also but only via IV. Like you stress of ANY kind trigger them. Hot and humid is the worst.
I have found daily low dose of klonopin (also treats unexplained tremors in my extremities) serves as good prevention. I have been on numerous anti-epileptics with some success short term. I have been off those for one month. It’s the longest I have been controlled without an anti-epileptic for 18 months (when my seizures/spasms began.
I as diagnosed with fibro last August during my second hospitalization. My pain has been a major cause of seizures/spasms in the past and now that we have an idea what is going on and the pain is being addressed I feel so different. The episodes are a very slippery slope since they average 45 mins from start to finish before the ativan im injection stops all movement. I feel beat up and sore beyond belief for days, that pain uncontrolled triggers additional episodes.
I asked my rheumatologist to please look into the possible connection between FMS and this mystery as I had also seen similar articles. He is head of rheumetology at Cedars as well as an instructor at UCLA. He is very into research and was interested in my theory.
I found the info on Epilepsy.org. I was at the time looking up PNES and Fibromyalgia symptoms and was surprised at the fact there was a connection. A good link is this one - a pdf document.
HI Paytons mom, I'm a little confused as to why your neurologist won't diagnose it as PNES. I went into an epilepsy clinic for a week to be observed and tested (not fun) by the end of it they told me that nothing showed up on brain scan side of things (used better words then that lol) and that it couldn't be epilepsy. I took it so hard at the time , i didn't want to have epilepsy but being told they were psychogenic made me feel like I was being told i was crazy. It took a while to come to terms with the fact thats not what it means, they never treated me like either. The doctors there were actually very kind and told me that they were likely brought on by my pain and the stress it causes me. That our mind and bodies can only take so much and its a way to take all that stress and give it a physical sign. Like HEY LOOK AT ME THIS IS REAL. and that like someone with Epilepsy I can't control when I have them. But pain management could help in stopping triggers. Unfortunately i couldn't afford to go to the pain clinic they wanted me to go to (to far away).
I get them in periods, with the occasional one off. If have a really bad flare up or major emotional stress happen I'll have them. My seizures vary in type and length. Anything from twitches to full on all over body thing, to five mins to like a half hour or longer. They are painful, and sometimes I can't breath well during them or hurt myself accidentally (bang my head) which is why i usually have a family member around when I am in a phase with them. While I am always 'conscious' I'm not always... with it though. some of them I can hear everything being said to me but others when I am out of it I can't recall details and apparently I have the kind where I zone out, I've lost minutes before. I also don't drive because while sometimes i get a warning ( I feel strange) other times, like the other night, they hit without any sign. I was literally reaching into the fridge to get the jelly to make childrens lunchs for the next day and BAM began to twitch. Brother had to help me to bed and do the night routine I usually do.
I don't react to meds or react to them well. Sometimes not even muscle relaxers, anti-epileptics have been tried in the past with NO result, and I'm very allergic to morphine that I can't even have that when in the hospital for pain. I pretty much tough seizures out and try and rest.
I would suggest having your Rheumetologist look up FMS and PNES at the epilepsy.org site. The link I put in my response to Dee should help. Covers a good deal.
So sorry you deal with them too. I really didn't expect to see anyone else but I'm glad I posted. They have often taken over my life and I wouldn't wish these on anyone.
Sounds like your diagnosis for PNES was handled much better than mine. Part of the problem was the “seizures” existed for a year before I was diagnosed with FMS. The pain levels I wad experiencing weren’t identified or understood for what it was. There were millions of theories. The hesitation was concern that the seizures were deep in the temporal or frontal lobe - both can be problematic to detect on an EEG despite multiple studies for long periods of time. My first neurologist I was “lucky enough” (sarcasm) to see walked in during one that was an hour in and with no history of any tests for cause said I obviously had psychological issues from or molested. Neither true whatsoever, I even went through a year of useless psychotherapy with two different doctors to be told its not psychological.
About 9 months in my pain levels were out of control and the processing of strobe lights or extremely loud music, flashing of fluorescent lights would send me into a seizure. I would also wake up seizing (not standard for PNES). All these factors I was diagnosed with staus epiletis (meaning they require drug intervention to end). Three months later hospitalized because just walking 100 ft would trigger a seizure, I was actually checked for lupus for the third or fourth time. Seizures can accompany it and I have a list of other symptoms. This is when FMS was diagnosed. They immediately changed their treatment to controlling my pain and within a few.day I was doing better and seizure free. Walking took a while but I refused to be seen in a whwwl.chair and fought through!
Have you tried klonopin? It is an affordable medication and does wonders not only in controlling my tremors, it also seems to be very helpful in preventing seizures. Like you I have had horrible issues with many meds. For me the key has been start at lowest possible dose and increase very slow only if necessary. I have had problems with meds from anaphylactic shock to my bladder shutting down, vomiting, hives the list is distinguished.
One.last thing, you mentioned you have no insurance, I have been told that both PNES and Fibromyalgia qualify you to receive medicare through your state. It may help you to get better care and treatment to control what you are dealing with in a more effective way. I am finally able to drive just around locally and it is amazing. The opportunity to gain back your.independence no matter how little is BIG!!! Getting your seizures controlled will improve your pain level and quality of life so much. It felt so good to finally be able to go to the grocery storw and not be fearful I may have a seizure (which has happened).
Please keep in touch and let me know how you’re doing! I hate that you are suffering throuvh regular seizures. I know 100% how miserable and life altering it is.
Giant hugs my dear friend. You have no idea how glad I am that you put this out there!
I have reactions to light and sound. It doesn't always trigger a seizure, it seems to have always been dependent on how much stimuli i have been coping with period. If i'm not in a bad fms pain phase i likely won't reacted bad because i'm not over stimulated. Also I am already light and sound and colour sensitive as it is. so I avoid a lot of stuff because bright colours move and wiggle for me, sudden noises and other noises(complicated list) make me feel sick sometimes and I startle easy (lol) and lights i find offense. I'm use to doing a lot of things in the semi-darkness when I'm on my own as my head feels less pain when i don't have bright lights everywhere.
I've never even seen a list for whats standard for PNES but I have seizures when I sleep and when I wake and i've been told that it was normal :S Yeah on the being checked for Lupus and i swear my thyroid is always a topic of discussion.
Medical insurance is an issue because I can't seem to understand the paperwork and my mom isn't much better (hs fibro too) and i had someone who was suppose to help me with it but then they never came through so trying to work it out with someone else. Migraines tho have been making it hard tho. I know i really need to get it, not just for me but my daughter but its like a battle.
I am sure i could try the klonopin, I don't know what the docs have tried. Just that they have never worked and I am a bit med phobic because I've never liked putting pointless garbage in my body and the dif reactions to meds I have gotten is very much like urs.. including breathing issues and my body shutting down (coma like state) for three days. Me and meds do not have a fab love affair.