Somebody Help
About a year ago I started having dizzy spells that went away and would come back periodically. Then I started getting extreme sleep paralysis and nightmares about 8 months ago. I would scream for help and yell" wake me up please someone help" in my dead sleep. When someone would wake me up I would remember everything like I was aware I was yelling for help and that's why I would say wake me up in my sleep. Now fast forward to about 2 my months ago. I started having very serious symptoms before I even fall asleep. It doesn't matter the time of day but anytime I lie down to try and sleep I start getting muscle twitches in my face and it goes to my entire body accompanied by a sort of tingling sensation and paralysis. Also get really hot flashes and a feeling like I'm falling off a cliff or something. I've read about hypnic jerks but this is on a whole another level. It will happen continuous throughout the night until I finally fall asleep from pure exhaustion. It gets better if I sit up as well. It's very scary and it feels like I'm gonna die. I have a Neurologist appointment coming up in a few weeks and I've started keeping a log. I'm scared for my life at this time. I'm getting hardly any sleep and feel extremely taxed all day from this. Does anyone have any feedback? if so please message...
Lori, sorry I havent checked in for a few. I started the Mirtazapine back at a low dose of 15mg about five days ago. Guess what???...I have had zero symptoms at night since I started it back, I mean absolutely no shooting pains, no shocks to the nervous system!! Do you really think that it couldve been from Mirtazapine withdrawal, even a few months later?I have read several things online where people had debilitating effects from stopping the medication even at a taper and I stopped cold turkey. I have read where people had brain zaps even years later because of this medication. Im just blown away by this for real. First ive stopped this medication in the past and never had any side effects from stopping. Second it shouldve already stopped by now. Maybe im one of those few cases where the medication effects of withdrawal is more long term. Makes me wonder how safe it actually is? Also there not a lot of research on th WHY of brain zaps and...why they actually happen. Doctors just know that they do but havent actually figured out why. Could it permenantly change the chemistry of your brain for the worse? Now I have another dilemma, actually two. Now how do i stop this medication without these symptoms returning? a slow taper? and what if they come back? Is there a treatment for it? Gabapentin or Lyrica, like Neuropathy? Also now im extremely tired all day long. I could barely hold my eyes open while driving my f orklift today, its not good at all! Another bad thing is that my night terrors from the PTSD have returned witjh a venegence. Can I not just live a normal life? Ill say one thing tho, I will trade sleepiness and night terrors any day of the week for those terrible brain zaps and muscle tremors i was experiencing. That was the worst thing ive ever been through in my life and scared me to death. Im just hoping that the meds arent just knocking me out and covering for an underlieng issue that still hasnt been discovered. Odds are probably not because Mirtazapine isnt known to treat any neurological issues but it still make sme think ....How could all that be from long term Mirtazapine withdrawal? AND final word tonight....Do I have to trade one bad thing for another...? Why cant i juist stop the meds and be normal? Thats all i really want...not more meds ....not having to take a med because my brain cant process the withdrawal properly...
Hi
. Thanks for checking back in. I am glad Mirtazapine is helping with the brain zaps, but it sure does add to the confusion. You might be onto to something though. Many of your symptoms are similar to serotonin withdrawal. Here is an article that describes it: https://www.medicalnewstoday.com/articles/mirtazapine-oral-tablet#important-warnings. I don't know a lot about Mirtazapine, but most drugs in this class work by providing your brain with lots of serotonin. That forces your brain to build receptors. The more you take, the more serotonin receptors your brain creates. That's why it can take a while to feel the effects. When you taper, you allow your brain to slowly get rid of those receptors. If you quit cold turkey, you leave bunches of receptors with no serotonin and you experience withdrawal. It can be very dangerous. Have you ever heard of serotonin syndrome? It is definitely something to ask your psychiatrist or neurologist about as well, especially if you were taking other medications at the same time. Here is an article that includes a description of serotonin syndrome: https://www.mayoclinic.org/diseases-conditions/serotonin-syndrome/symptoms-causes/syc-20354758. You never know. Maybe some combination of the two conditions caused these symptoms and a slower tapering will help. It will be interesting to hear what your doctors think. I wish you had more energy and that the PTSD was under control, but what a relief it must be to have no more brain zaps. Please continue to keep me posted. I hope you are finally on a path to discovery and that you will soon be feeling better again. - Lori (Team Member)
Hey Lori, I seen the primary care doctor yesterday. She is referring me for a second opinion to West Virginia University Hospital in Morgantown WV a bigger hospital than we have here in Clarksburg. She is concerned with the symptoms for sure. Also this rash on both feet will not go away. It's actually gotten worse...wether it's directly connected or not. It could be shingles she isn't sure so she also referred me to a dermatologist. If it is shingles it could be infecting my brain or CNS...and can cause encephalitis which can be fatal if u untreated. On another not...have you ever heard of brain zaps? From antidepressants withdrawal? These shocks started about a week after I stopped mirtazapine cold turkey...but most cases the brain zaps stop after a week not start after a week...but I found a few studies where people actually experienced disabling brain zaps and other issues for months and even years...lmk what u find out on this subject...check out the screenshot I e attached...
What a relief to hear that your doctor is referring you to a bigger clinic,
, and a teaching hospital at that. At West Virginia University Hospital, you will have more specialists under one umbrella who can easily share information. Residents and doctors at teaching hospitals often live for cases like yours, getting excited to solve the puzzle. I am sure you will be in good hands. It will be interesting to hear what the dermatologist says, for sure. Sometimes, a rash can tell a dermatologist more about a patient's health than slews of tests can reveal. A few decades ago, when I lived in Syracuse, my dermatologist became a leader in diagnosing Celiac's disease. He could see the results of related nutritional deficiencies in the skin. This was long before Celiac's disease was well-known when the only diagnostic method was an intestinal biopsy. (He always had primary care doctors confirm his suspicions.) I ended up doing a story about him and about a support group formed by his patients for the newspaper. I feel like you are getting closer even though you still have no answers. That is an interesting study about the brain zaps. Maybe you are onto to something there. I hope you get appointments soon with the dermatologist and the doctors in Morgantown. You know I will be thinking of you. - Lori (Team Member)
Thanks Lori, I definitely don't think it's a pinched nerve because the way it feels, it's really hard to even put into words. I just think they are missing something. I just hope it doesn't cost me my life...Lately it's been happening when I'm sitting up as well...just anytime my body tries to relax or shutdown the symptoms kick in full force. It's like fight or flight saying DONT fall asleep or rest!! Really odd...I even bought a 10N1 pillow to elevate me ...still no relief...that's when I realized it's getting worse cause it never happened unless I was lieing down...And I'm getting more headaches now...idk
Keep advocating for yourself,
, and consider joining the Rare Diseases community. You might find someone there who shares your symptoms or understands them. - Lori (Team Member)
Hey Lori, I went to the Neurologist yesterday and it was pretty uneventful. Honestly I thought more would've been done. He read the sheets of paper I printed off for him about my symptoms. He asked me about ten questions pertaining to my individual case. Then he said"you are right, your symptoms are weird". He said there is no known neurological condition where the symptoms get worse while lieing down. Idk...then he hooked me up to the brain electrode cap for twenty minutes and then came back in to talk to me. He asked me if I've ever been on Effexor...I was like is this guy for real. He is gonna try and give me an SNRI...omg...it's like we are going back to the beginning. It's NOT anxiety...He seems like a pretty good doctor, but too often they go straight to my mental health history, which I don't blame them, but they need to listen to what I'm saying. Anyways it wasn't all a bust. He did prescribe me the other two medications that the ER gave me the night I went by ambulance. I didn't get to start them last night because I'm waiting on this insurance to cover it. It will probably not be for two days... I just hope it helps..But I'm scared that of it does help, it's only gonna cover up the symptoms I'm expecting that are continually getting worse by the day. Then what if the condition just progresses. Now I'm getting more and more headaches. Last night I felt terrible, face numb and tingly, pain shooting from head to foot. It was one of the worst nights yet. I had terrible night terrors once I fell asleep. In my dres, I was dreaming that I was lieing there suffering. (It was a direct mirror of what exactly was going on before I fell asleep) The doctor said (exact words), "Well since the MRI kept back negative, that eliminates 99.99% of all brain conditions". I'm thinking," I'm not a doctor, but I've read plenty of material during the research into my condition, that says that a CT Scan and MRI can come back normal and you can still be suffering from -XYZ-, Including encephalitis and meningitis. Alot of conditions are found through a spinal tap only and they haven't even done that or even said they were going to except my primary. So I have to schedule another appointment with my primary. If I end up in a coma or dead I want ball of my words on here used to help people... because I really feel like I have something serious going on...not just some PTSD...
How incredibly disappointing,
. I really hoped the neurologist would do more for you. Given that the symptoms worsen when you lie down, have you ever seen a doctor who specializes in the spine? It could be something as simply as a pinched nerve in the neck area. Maybe you could ask your doctor for an MRI of the upper spine as well as the spinal tap. POTS is another condition worth testing for. If you have POTS, it might be contributing to the severity of your symptoms. Here is an article about it: https://www.ninds.nih.gov/health-information/disorders/postural-tachycardia-syndrome-pots#:~:text=Postural%20orthostatic%20tachycardia%20syndrome%20(POTS,from%20a%20lying%20down%20position. If you still get no answers and no relief after this next visit, you might want to think about contacting some of the bigger clinics around the country to see whether they will take your case on. You would likely have to travel, but the larger clinics can arrange all your appointments in one day. Here is an article from our sister community for people with rare diseases that you might find helpful: https://raredisease.net/diagnosis. In fact, you might consider joining that community. I was once a moderator there. You will find lots of members who are in the same position and who might have some better advice for you. Please continue to keep me posted and don't give up. You deserve relief. - Lori (Team Member)
