Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
Hey, I’m assuming your talking about my post about hand crqmping seizures from masturbating? It sent me an email so Im responding to you. I think you said you have switched hands and that didnt last? Thats kinda different cause I switched hands and its been fine for over 20 years or more now. I basically never got any answers from any of my doctors. But I also didnt have transportation for a while then nowadays I dont have insurance. If you can see a nuerologist, do so. If you have one already, ask him or her about this. Dont be embarrassed. Their doctors and humans. Everyone masturbates. Everyone. Its just not openly discussed ussually. But this is something that seems to be happening to more and more people and yet nobody I have seen has got a straight answer, or we just havent heard about it yet? So ask your nuerologists about it and dont let them just brush it off. There is something to this and it needs to be addressed. Your dr’s job is to find out how to best treat you. So if they havent heard of it, then they have the best resources to find out more on this subject. I was put on medication that has worked at stopping my nightime seizures. And I dont dare masturbate with my right hand anymore. So I dont think the meds would stop the cramping which leads to a seizure, ya know? If I could use either hand, I would buy a fake vagina sex toy that can be mounted securly and lube it up and have regurlar hand free sex with it. Just gotta use your imagination to get around the blocks in the road, ya know? Again, dont let your do tor deflect the topic or tell you its nothing. Their not getting paid to intimidate you or make you feel stupid. Their getting paid to help you. So dont be mean to them but dont be a pushover either. I always wanted to write down all the questions I had and bring them to the doctor with me. Then not leave til I got all my questions answered sastifactorally... Is that a word? Lol!! Anyway, hope this helps? Lemme know if you have anymore questions? Good luck and dont sweat it too much. You’ll figure out how to adjust and adapt around these hiccups in life... peace brother!!
Brother exactly same thing is happening to me..my mri is normal.its so hard to explain the pain during the time of seizure.i havnt done masturbation for few month cuz of fear of same problem.i dnt know what to do.Basically I haven't told my physician about this due to embarrassment, and I've found zero resources on the internet for this.
Towards the end of 2010, I was masturbating in the shower before work. I felt my right hand tense up (I'm right handed) and it felt like my hand was just getting a really bad cramp. But I couldn't shake the cramp and I couldn't get my hand off of my penis. At this point my vision started to go black and I could feel the muscle tensing up my arm, into my shoulder, my neck and finally my face and then I passed out. I woke up half an hour later in the bottom of the tub with my head split open and went to the ER, told them I just blacked out, got stitches and I was on my way.
Two months later, the same thing happened but when my hand started tensing I knew what was coming, sat down and kicked off the water. This time the seizing was MUCH more violent and my arm was flipping around wildly, extremely tense and painful, and it again moved its way up my arm, shoulder, neck and face and I passed out. I didn't go to the ER that time, and just finished my shower after I woke up and went to work.
Since this, I've tried masturbating with my right hand and it will start to cramp and I have to shake it off. I've also lost some dexterity with my right hand besides the obvious. I can't really manipulate my fingers as much and writing has become a little more difficult to the point where its changed my handwriting.
About 6 months ago, I finally went to a neuro for an MRI, and the MRI showed as being normal but they found a cholesterol granuloma in my ear, but I doubt that was the cause of the seizures and loss of dexterity.
I've not mentioned this to anyone I know or my doctor. What the hell is happening to me?
Bro i had this same exactly u have mentioned.my mri is normal.too early to say.............i am still having small episodes in my hand,,,this is waking me up at night now........i dont have to be doing anything at al now.....i wake up and just know its going to happen..my hand goes cold,my heart races. then thats it my thumb and forefinger start to spasm..(It doest look like its doing anything ) but i feel like my fingers are being ripped off and twisted then my hand starts to jerk backwards n forwards,,,then it stops and my thumb pulsates really badly.........anyone els had this...i have fell unconcios 3 times wholst having these strange episodes.......scary.
I m having same problem.Hi. I'm dealing with the exact same issue. Can you please help me out ? Did you find any help regarding this? If you get this please <send a PM> . I'm really looking for help.
I am starting to experience the same thing. I’ve been dealing with this for almost 2 years now. My right hand starts to cramp up and I can feel it go through my arm and by that time I know it’s too late. The muscle spasms go through my shoulder And into my face before I finally black out from the pain. I am left-handed, but it always starts in my right hand. It has happened three times during sex and twice during masturbation. My girlfriend of six years has decided to end the relationship. She said it’s the scariest thing she’s ever seen and she can no longer deal with it. She said I turned completely blue and I am unconscious for 20 to 30 minutes before I finally come to. Every test that I’ve done for year and a half. Continues to come back normal. Every medication has not seemed to improve my situation. I was hoping since you’ve been dealing with this a lot longer. You have found some answers. Please contact me if possible.Basically I haven't told my physician about this due to embarrassment, and I've found zero resources on the internet for this.
Towards the end of 2010, I was masturbating in the shower before work. I felt my right hand tense up (I'm right handed) and it felt like my hand was just getting a really bad cramp. But I couldn't shake the cramp and I couldn't get my hand off of my penis. At this point my vision started to go black and I could feel the muscle tensing up my arm, into my shoulder, my neck and finally my face and then I passed out. I woke up half an hour later in the bottom of the tub with my head split open and went to the ER, told them I just blacked out, got stitches and I was on my way.
Two months later, the same thing happened but when my hand started tensing I knew what was coming, sat down and kicked off the water. This time the seizing was MUCH more violent and my arm was flipping around wildly, extremely tense and painful, and it again moved its way up my arm, shoulder, neck and face and I passed out. I didn't go to the ER that time, and just finished my shower after I woke up and went to work.
Since this, I've tried masturbating with my right hand and it will start to cramp and I have to shake it off. I've also lost some dexterity with my right hand besides the obvious. I can't really manipulate my fingers as much and writing has become a little more difficult to the point where its changed my handwriting.
About 6 months ago, I finally went to a neuro for an MRI, and the MRI showed as being normal but they found a cholesterol granuloma in my ear, but I doubt that was the cause of the seizures and loss of dexterity.
I've not mentioned this to anyone I know or my doctor. What the hell is happening to me?
I have had a very, very similar experience. Twice during masturbation and three times during sex. It has ruined my relationship with my girlfriend. Scared to death to drive or even be alone. I have been doing a test and meds for almost 2 years now and nothing is working. The doctors are at a loss. Thank you so much for your post.My experiences are almost exactly the same
Hi guys, this is my first post on this forum. I found this thread after doing some research because I have experienced the exact same thing.
For a few months I was finding that my hand was getting increasingly cramped towards the end of a wank. I sort of ignored it until one day the index finger of my right hand started curling up in a way that I couldn't control. I had to prise my foreskin out of the grip of my index finger using my left hand but then my whole hand formed an unbelievably tight fist and my whole right arm started convulsing uncontrollably. After a couple of moments my vision started blurring and getting very trippy. Do you remember the scene in The Matrix when the agent dodges Neo's bullets on the rooftop? That's what my arm looked like to me as it was moving uncontrollably in front of my face. I honestly thought I was dying - the level of panic was unreal. Eventually I just blacked out and when I came around (I guess somewhere between 15-30 minutes later) I felt incredibly tired and my whole body ached to the point where I could barely move. All I wanted to do was sleep.
Obviously I was freaked out but I tried to just put it down as one of those things (in actual fact I went to the Glastonbury Festival the next day), guessing maybe it was epilepsy and I'd need to get it checked out, but the exact same thing happened again a couple of weeks later. The second time was even worse as I knew what was coming but it all played out in exactly the same way.
After that I realised I was breathing in a very rapid, shallow way during masturbation and that what I was experiencing was most likely due to that. I had a bunch of tests done - MRI, electroencephalogram, heart tests (I'm in England so you can have it all done for free on the NHS) - but they all came back clear so they were able to rule out epilepsy which backed up my theory about the breathing. In truth the NHS didn't know what was wrong with me. A number of theories were put on the table so I had to go and see consultant after consultant at hospitals all over the city and eventually I just gave up on them. They tried hard but they just didn't have an answer and I ended up feeling like a guinea pig.
In the weeks and months following that second seizure I abstained from masturbating but found that I was having both panic attacks and strange 'mini'-seizures at night. They felt almost like a very sudden adrenaline rush but accompanied by the right side of my body going suddenly very tense, including the fingers in my hand, but instead of turning into a full-on seizure the tension would release and I'd feel OK again.
By that point my daytime panic attacks had become frequent and intense. I just couldn't seem to stop thinking about the first two seizures - the pain, the absolute certainty that I was dying, the idea of it happening to me in public and so on. I'd be sitting at my desk at work and suddenly I'd get a rush of overwhelming panic where I was sweating, I couldn't breathe, my muscles would tense up. It was really horrible. And so for about 6 months I was having panic attacks in the day and then every night a mini-seizure that would be over in a few seconds. But then one night I was drifting off to sleep and a mini-seizure proceeded into a full seizure, just like the first two except I hadn't been masturbating.
This happened three times in a two week period. My best guess is that I was drifting off to sleep but having very panicky dreams which caused me to hyperventilate in my sleep which then triggered a seizure. This theory helped me understand what I needed to do to prevent it happening again, so the next time I felt a full seizure coming on I forced myself to do some deep, slow breathing techniques in what was almost a kind of meditative state of mind. I was just extremely focused on getting my breathing under control and getting my heart rate (which I think is also a factor) to slow down, and that focus helped me block out the feelings of panic. The breathing etc really helped - I felt spasms shooting up my arm and I was in a cold sweat but there was no seizure. The sensations eventually dissipated after 15-20 minutes and I was able to get things under control and fall asleep.
I had a couple more experiences like that where the seizure was coming on but I managed to prevent it from happening and I could feel then that I'd make something of a breakthrough. I recognised that the trigger was mental and not physical - since I wasn't masturbating it must have been my panic that was causing my body to go into seizure. Shortly after that I discovered something a website Non-Epileptic Attack Disorder or NEAD (nonepilepticattacks.info) which recommends Cognitive Behavioral Therapy as a treatment for that disorder.
I'm still not sure that my problem is NEAD but I can say that CBT has all but cured me of the panic attacks which has, in turn, stopped me from having seizures. By treating that psychological problem I was able to prevent the seizures, which I'd come to see as a physical side-effect. I learned a lot of useful coping mechanisms and was able to rationalise my thoughts before they escalated into full-blown panic attacks.
The seizures and their legacy are still a huge part of my life. I still think about the seizures and my 'condition' all the time, I find it difficult to do things with my right hand without panicking (riding a bicycle is a good example - I have to take frequent breaks because I freak out a little bit when I have to grip something for a long time), I can only sleep now if I have music or a podcast playing in my earphones (I use that as a distraction technique at night to try and stop my brain from looping back to panic-attack mode). But compared to where I was before CBT I'm almost like a different person.
I still don't masturbate in the traditional way - it's embarrassing to admit this but I got a fleshlight and I use that instead of my hand. I know that if I were to try and wank normally I'd only end up having a seizure again, even with all the knowledge I now have about breathing etc. I'd prefer just to not take the risk. I also try to abstain from drinking. I've always been a bit of a binge drinker - once I start I find it hard to stop, so I just try to avoid it now. I found I was self-medicating against the panic attacks with booze but in the long run it wasn't helping so it was best for me to cut way back. I often go for months without a drink now and I find I'm in a much better state of mind during those periods.
A funny thing happened in the gym recently. When I was lifting some weights (which I'd usually avoid as it involved gripping something...) I suddenly started to feel light headed and I realised my hand was tensing up. I breathed through it and managed to get things under control but it left me kind of shaken up. I realised in that moment that, yes, it's all about breathing - that's what this whole thing has been about. Although it wasn't nice to be taken back to that horrible, panicky, 'am I having a seizure?' place it was also a validation that I had managed to identify the the root of of the problem. All of that time and effort that went into researching the issue and coming up with a solution on my own had been worth it because pretty much I'd got it right.
So I guess that's my story. Thanks for reading it. This thread seems to be moving pretty slowly so I don't expect anyone to respond any time soon. I just hope the next person this happens to is able to find this post and see they're not the medical mystery that perhaps they thought they were.
Feel free to ask any questions - I'd be more than happy to answer.