If anyone has any experience with this, please let me know :/
I've posted on here before about the fear of seizures, as my mom has them, I had one when I was nine and I've had my own reasons for thinking I might be having them for the past few years. One of them being crazy muscle spasms. I know anxiety can cause a LOT of weird and really random symptoms in people, and spasms are even listed here on this site. But I feel like even though my stressors have gone down over the last year, these spasms, among other symptoms like stomach jolts and random bouts of fear, have remained (Though my crazy deja vu has almost completely disappeared).
I've read a lot on the different kinds of seizures and I feel I've pretty much convinced myself I have them. I've had many EEGs and all have been negative, even one that lasted for five days, but doctors also can't give me a clean bill of health - they're just not sure. So I'm stuck in limbo, with these insane physical symptoms and no direction toward how to treat them. I can't imagine living the rest of my life like this. And the spasms are so uncomfortable and unsettling. And a lot of times they come with weird sensations like I'm floating, or butterflies in my stomach.
Has anyone really ever gone through something like this before? I'm feeling pretty crazy right now.
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italiancookie
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The déjà vu thing I’ve had used to be with me all day long, I get it now and then but it doesn’t bother me. I’d rather get that than impending doom feeling.
I sometimes get like a rush in my head, but it seems to start at the back of my neck. My neck and back muscles are always tense and I often feel unbalanced and nauseous with this too. I get the stomach jolts, and the butterflies, which send me running for a loo!
I've had these funny head things for 5 years on and off now, and have had all the MRI and heart test come back all clear thankfully, but they've not gone away. I can only think it's panic!!
It’s awful, isn’t it? I never thought anxiety could do such weird things. I want to be normal! Lol
I have this with my anxiety and because of it I now have a terrible fear of seizures. Even muscle spasms are symptoms of anxiety. You won't have a seizure.
That is my fear and the neurologist is not quite sure. Last year I had eeg and then a four day eeg but no episode could be caught. I have now since been having more issues. I've seen three neuros and they all say different things and ENT etc. I have severe head pressure and keep feeling like I'm gonna faint. Tingling sensations and electric shocks in my face and head. I get waves to in my head or rush feeling and then a spread of tingling, my heart rate increases and so does my blood pressure. I feel like I'll pass out. Have been to the ER via ambulance several times. I wake in middle of the night feeling waves of faintness. I have pressure and rumbling whooshing sounds in ears. I get a stomach rise (happened only five times with that one). I get intense burning in head and chest and back too. It's so many physical neurological symptoms it's insane and it changes up. I've never dealt worh anxiety or panic til last year if this is what it is. I have not taken any meds as I fear them after I was told to try a seizure med for migraine with aura and possible seizure and that one dose liked to killed me, I was taken straight to the hospital. Since then I have a fear of taking any medication and it takes a bit to get courage to take anything as simple as a Tylenol. I have also been getting a sense of falling through the bed while awake and moving backwards when actually sitting still in the car. MRI of brain and MRA are normal. I have had MRI of entire spine and stenosis and bulging disc but nothing else really noted. I have a rescue med they gave me because I'll get to the point of close to going to ER and shake all over too, never have lost consciousness but get close to it. Very low dose and if I take it when I notice it starts coming on strong it prevents it from getting to that point of having to go to the hospital. But I struggle daily now with pressure in head 24/7 and faintess and weird sensations in head and in ears. Ent is trying to rule out retrochoclear lesion as of right now. And neuro awaiting for the eeg to be ready for use (new office he has) in order to do a 72 hr video eeg. I have seen endocrinologist to rule out thyroid issues and cardiologist all last year. I don't know what's wrong with me and I feel the symptoms are what's causing my anxieties but it's gotten bad. And it's hard feeling these physical symptoms daily and having trouble just doing things. I feel I'm gonna go down all the time and even trouble swallowing and breathing at times. Not cool and so hard with being a mom of a toddler. I work through it the best I can and pray for some answers soon. I wish you well. It's hard to believe panic and anxiety can cause all this. I've been told panic and GAD, migraine with auras, tension headache, possible focal simple seizures, non epileptic seizures. Apparently panic disorder falls under the umbrella of nonepileptic seizures. He said he's 90% sure its nonepileptic and only 10% epileptic never know til I have eeg or severe panic and anxiety. Any thoughts from anyone or expletives like this?
Wow, thanks for much for this reply. Yeah, all of what you describe, I’ve gone through. Please keep me updated and good luck with everything! Could you explain how that one dose of medication almost killed you?
After 30min taking the very first dose I started getting zaps in my toes and it felt warm and I though hmmm ok I can handle that, it's not too bad. Then within an hour we are in car driving home and the zaps intensify and I start feeling very faint and scared and getting really hot. I would have to lay back in the seat and try to breath. I felt my heart pounding and then a hot wave rush through me from head to toe. I knew something was wrong and the waves and heat intensified along with the zaps going throughout my body. I call it the Devil pill that literally set the inside of my body in pure burning torture flames. I felt like I was being burned from the inside out...it would start in my head and run down all the way to my toes and then head back upwards from my toes to my head. I'd feel when it would come on and I could tell the dr and nurses when my heartrate and blood pressure were gonna rocket up and I would buckle over and shake so bad and I was throwing my shoes and socks off I couldn't take it. I thought I was going to code., the dr turned the monitor around because he though I was going off that. I also would turn bloody red my skin would when the waves came. I said oh no here it comes and he shook his head and said yup your right. (I work in the medical field so I think that is why at first he thought I was focused on the monies) and I said it isn't the monitor treat the patient not the monitor. And good thing he seen for himself I knew when everything was escalating and I could tell him here it goes. My child and his dad left the room because my toddler was scared and I told him I love him very much as I was being given tons of fluid and steroids and Benadryl and a whole bunch of other stuff. My hr got into the 130s-160s my normal is 50-60's and while sleeping it's in thirties. My blood pressure runs lower than most and it was really high as well. I truly thought hey we're going to end up coding me. The dr consulted other drs and evencalled poison control regarding this medication because of how the adverse reaction was and they hadn't seen anyone react like this to the medication. They of course took a drug screen to just to make sure but I don't do drugs but they have to check. It was the scariest thing ever. It caused intense burning like felt like real fire coming from the inside out and I was being torched from the inside out from head to toe.
Also forgot to mention I was in the hospital over night and hen went home and had to return because the symptoms came on again with the shaking and faintness. Then went home and returned again and followed up with gp and had episode in Dr office of increase bP and HR and faintness and shaking and they called the neuro and then started me on a rescue med for panic and possible seizures. My GP felt I was having awareness seizures with panic because I was shaking all over. Never had the full body shakes til after that medication. And mind you it was the first and last dose of that med. it had an effect on my body for almost two weeks and it should've have already been cleared out of my system but it effected something becazue to this day I still get the shakes with my epsisodes. And not I get the burning sensations I mentioned before head, chest and back stomach too at times. So I don't know. Before the med it was more of in tease bP and hr with the not right tingly feeling in head and faint feeling which was bad enough and would go to ER. But now all this other stuff is added and symptoms change so much or shall I say more symptoms just piled on now.
They were giving me oxygen too. It was a lot to go through and deal with and being alone in there and I wouldn't want the nurse to leave me and when thy had to go out when he intense wave would hit I'd yell out for them because each time it did I thought here we go I'm about to code. They kept my curtains open and drs close by because of it. They didn't know exactly what was going on and how to respond to it and had to make calls to figure out what to do. Even my previous neuro couldn't believe it. But it was the only thing in my system. I don't drink I don't do drugs and I hadn't taken any medications except that. And the fact it started to occur thirty min after taking it and into the hour of it bam all hell broke loose. Anyway they all said never ever take that again and throw the rest out asap.
Sometimes it comes on quick the intensity of it for a few min (hard to time it when it hits because I have impending doom and feel like I am about to die or collapse) and then sometimes 15min sometimes longer and the anxiety afterwards last forever and shaking can last a long time after couple hours. Then afterwards I am freaked out for awhile. Now I feel not right 24/7 constant head pressure and faintess feeling and ear pressure etc and it wakes me in the night to feeling faint. It's taking a lot out of me. Hearing in and out etc. ENT r/o ear issues and is in process of doing peer to peer review for MRA of neck since it was denied. He wants to make sure I don't have any carotid artery stenosis.
Yeah, I’ve had literally all of those symptoms. You’re the ONLY person who seems to have all of the same symptoms I’ve had. What I can tell you is my situation has gotten a lot better. It was really intense in the beginning and I was depressed to the point of pretty much hallucinating. But after a year and a half or so, things started to really mellow out and when they do happen now, they aren’t as severe and don’t last as long. So stay hopeful, go to your doctors, and keep me updated! I wish I knew what it was we were going through, but I think with some mindfulness, you can make it through
Thank you so much Italiancookie. Do you take anything for it. I can barely do anything. I just push through. The driving thing when I come to a stop and I feel like I'm moving backwards still happening more and more. And the faintness feeling happens all the time and all through the night. And the ears with noises makes the rumble in my ears worse too. I am glad to be on this journey with you. Lately the stinging zaps in my face or rubber band popping feeling as happened a lot too and the tense jaw. Still the gripping head pressure where it feels like something is squeezing my brain stem is non stop. I had to take my emergency med Ativan 0.25mg because I was getting so fearful. I try not to take, but there are times I have to. I live in fear I'm gonna drop dead and the drs are missing something. And I more fearful because I have a small child so it makes it harder seeing my child having to experience this with me. It's been it's been a little over a year for me with all this...a year and a couple months. I laid down all day yesterday due to my head. I got an impression of my teeth for a night guard which I can wear during the day too for the tightness in my jaw to see if it'll help any, it should be ready in a couple weeks. And some glasses for reading so I should get that Tuesday. Scary when you fear for your life and not knowing what is wrong, are you still seeing doctors or neuro?
I took Prozac for a moth and a half a couple years ago, but it ended up giving me episodes in my sleep, so now I don’t take anything. Doctors have tried to get me to take a couple other anti anxiety meds, but I’m definitely scared to. So I just don’t lol
I fear Prozac, my mother and my dad had a bad reaction that that particular one. My dad who is sensitive to all meds did ok on Zoloft for about three months and then he weaned off he is not one to take meds unless necessary and said if it isn't going to kill him then he will stop the med. my fear is if I am having seizures non epileptic or epileptic either way taking an anti depressant lowers the seizure thresh hold and make you have more or worsening seizures. So that scares me to death. Then I had a cousin have a severe rxn to some anti depressant, not sure which one, but ended up in ICU on a ventilator. She is ok now but I have so much fear in trying anything. But I also know I am struggling. I fear there is something really really wrong. I keep feeling waves and squeezing in my brainstem non stop and brace myself when I feel like I'm about to go down but I don't. Thank goodness but it's very close. I'll keep you posted. It's like my entire head is in a constant spasm and won't let up.
Scary to even know that stress and anxiety can even cause seizures or conversion disorder etc they have so many names now for it. I just want to know what is wrong like we all do. I pray it gets better and you give me hope hearing your story. Hugs
That’s exactly why I don’t take any meds. Doctors seem pretty confident that I’m not having seizures, but because the drugs have the possibility of lowering your threshold, I’m not willing to take the risk.
Same here. And the fact I have so many neurological symptoms as it is and it those meds affect the brain chemicals chemistry and so I am scared of worsening neurological symptoms, it is torture. Some part of me feels what if it actually makes you feel better and the the other part of me is like what if you take that chance it is worsens everything or puts me in icu or have an advers rxn or allergic rxn etc. that is all because of my experience with taking that one med that out he fear of taking meds now since it did what it did to me...it was a seizure migraine med
I would say to focus on other methods of stress relief. Meditation maybe, or yoga. Whatever hobbies you have. Anything you can think of to make yourself a little happier day by day will really are up. That’s what happened to me over time the episodes subsided
Meant to ask you, do you ever have the feeling your falling through the bed when laying in it or even worse when driving you stop the car and it still feels like your moving except you feel like your moving backwards?
Agora1 thank you. I am literally crying now because this has been scary the heck out of me. Even the pressure squeezing feeling in my brainstem with constant faintness feeling all day and through the night waking me up feeling that squeezing wave of faitness too, I feel like I am going to die and I look at my son and it makes me cry even more because he needs me and I need him. It's horrible. I keep getting stinging sensations in my face and head and it's all so much ya know. So your sensations have gone now? What do you do for treatment. My rescue med Ativan 0.25mg when I decide to take it for the pressure and feeling scared etc doesn't seem to help with the pressure tightness or faintness with the he stinging zaps etc but will help me to calm down a bit with getting into the overwhelming thoughts of fear of death so I can breathe. It doesn't seem to stop the feeling like someone's hands are around my throat choking me lately either. But it will stop me from the 911 panic or whatever the episodes that are really bad are.
I hope one day I will be able to look back on this and say I won too. And could help others in he process. I don't take the benzo that often and feel like I have failed when I have to, but I know I got to sometimes and I hate it. But I may have to try an antidepressant to get me over the hump, but I am so scared to try one. Especially not knowing if these are seizures or not and if they are if they are epileptic or non epileptic. Thank you for your responses and your words of encouragement. Glad to have you on this journey. Xoxo hugs
I got prescribed that a long time ago and then my neuro said not to take it til we find out if it is seizures or not because it lowers the seizure threshold and can cause more or worsening seizures. I've heard a few people say how great that med had worked for them and the same with Zoloft.
Yes. It’s definitely not as bad as it used to be though. The fear of it makes it 1000 times worse. But I do occasionally still experience it, and sometimes it does wake me up. Usually if I breath deeply, I can get back to sleep. It’s when it comes with panic or butterflies/jumping sensations in my stomach that make it more difficult.
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