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Internal Vibrations in Head at Night: What do I have?

Posted by lmcdonald1119 @lmcdonald1119, Jan 9 10:21am

Hey all! I am seeking advice on what to do or what I have. First started off with head vibrations at night that were keeping me up. Had a CT, MRI and all good there. Sometimes I get neck and head pain/pressure, but with caffeine that seems to stay away. I have been to an ENT, eye dr. and my primary. The said a slight hearing loss and anxiety. That is all I got. I was put on Zoloft and now I am noticing that I am having internal vibrations in my body and legs and legs feel weak. I am also having worse insomnia and anxiety. They prescribed me Gabapentin to sleep for tonight 300mg. I am going to try that for rest. I am healthy 42 year old that works out and eats healthy everyday I am aggravated with no answers. I am going to stop the Zoloft and see if any improvement. I also have tinnitus ringing in my ears constantly each and everyday along with dizziness and brain fog. My eye sight seems off as well each morning along with a high heart rate just in the morning. I have also been to a cardiologist and had the tests there and they said it is not my heart. Please any advice would help! Thanks in advance.

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closetmonster93 | @closetmonster93 | Jan 10 11:52am
In reply to @santosha "@lmcdonald1119 Good Morning! My last seizures occurred during my sleep at night, something completely new to..." + (show)
@santosha

@lmcdonald1119
Good Morning!
My last seizures occurred during my sleep at night, something completely new to me, as they used to happen during the day. Even though I had those nocturnal seizures, I can not remember them at all. My husband reported them to me. Perhaps I can not remember them, because they have evolved from partial seizures to tonic-clonic ones.
My doctor said that nocturnal seizures are something pretty common to happen in epilepsy, affecting many of us. But do please talk to your doctor about your situation and seek a medical recommendation.
Lack of sleep or lack of good sleep is a well-known trigger to seizures. I am currently having sleep problems as a side-effect of a medication. On those nights I had little sleep or bad sleep, I try to sleep during the day and also practice yoga nidra which provides me with profound sleep I am currently having very little. Having a watch that monitors my sleep has been very helpful in knowing when I need to take it easier in my day so as to avoid seizures and increase my seizure threshold.
All my best to you. I hope you can soon understand what is happening to you.
Chris (@santosha)

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I have questions really for anyone regarding this as I was directed to this conversation. I to never had seizures in my sleep, however, in 2024 when seeing a new neurologist, I wore a take home EEG that caught this in my sleep. I had never had seizures in my sleep before, and so this was startling to me. What can cause these, when you never have had them before, I did not have them in my sleep, and my medication has not changed in 2 years, and so I am wondering, is the medication even working, if now I have them in my sleep, and are completely unaware, but do not have them at all in the waking hours. I am so puzzled by this. My doctor doesnt explain what could, or what is causing it, and I am baffled trying to make sense of this new mystery.

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Moderator
Lisa Lucier, Moderator | @lisalucier | Jan 10 4:01pm

Hi, @lmcdonald1119 - I moved your question about seizures at night to join with this other discussion you started in the Brain & Nervous System support group:

-Internal Vibrations in Head at Night: What do I have? https://connect.mayoclinic.org/discussion/internal-vibrations-in-head-at-night/

This discussion also appears in the Epilepsy & Seizures support group. I merged these discussions to bring all the members together who were talking about similar symptoms.

lmcdonald1119, if you are thinking this may be medication-related, have you spoken to your pharmacist to get their input on what you are experiencing?

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Chris Gautier OR Santosha | @santosha | Jan 11 7:08am
In reply to @momofone2010 "I struggled with this exact problem for more than 2 years. My dr shrugged it off..." + (show)
@momofone2010

I struggled with this exact problem for more than 2 years. My dr shrugged it off and made it seem like it was in my mind. Finally I was so fed up I started researching it on Reddit and someone posted about similar symptoms. Another redditer piped in and said “take magnesium, l-methylfolate, vitamin D and B12”.

To my surprise, just adding magnesium helped immensely. Over time I added in the other vitamins recommended but wow the magnesium worked.

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Hi @momofone2010
I have also struggled with gastrointestinal symptoms while taking Vimpat and now with Keppra.
This coming week, I will be seeing my gastro again with the results of new exams. I have seen that I have DAO deficiency on one of those exams. DAO deficiency can bring many symptoms such as gastrointestinal issues ( abdominal pain, bloating, diarrhea, and nausea) and can be related to AEDs we take.
I am sharing here with all of you my recent post on DAO deficiency in our group:
https://connect.mayoclinic.org/discussion/has-anyone-dao-diamine-oxidase-deficiency/
Let's see what my gastroenterologist tells me, and if there is anything interesting, I will share it with you.
Chris (@santosha)

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Chris Gautier OR Santosha | @santosha | 4 days ago

Hi @momofone2010
Yesterday I had an appointment with my gastro, a quite disappointing one. She said that Keppra can cause all the gastrointestinal side effects I am having, suggesting I see a nutritionist to help me with a specific diet to hold on to my current dosage of Keppra. In my view, she was not very caring with such an attitude!
Regarding my DAO exam, she said my level is not too low and I might have or not have DAO deficiency, being quite inconclusive.
When I asked her if AEDs can cause DAO deficiency, she initially said no. But then I said that I found some studies saying that carbamazepine and valproate can affect DAO activity. She then started with a quick search herself and confirmed that Carbamazepine can affect DAO activity, mentioning Topiramate as well. Clearly, she did not do her homework.
When I asked her about the relationship between histamine and epilepsy seizures, she replied she did not know about it. Again, she did not do her homework. I have just shared one study regarding this relationship in my post on DAO deficiency.
So guys, my suggestion: do your homework before your appointments. Today, we thankfully have much access to information through the internet. It will help you to better evaluate the doctors who are treating you.
Thankfully, my current doctor who treats my epilepsy has a different attitude. I will ask him to talk to this gastro. As he is a doctor, she might respect him differently.
Chris (@santosha)

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Moderator
Lisa Lucier, Moderator | @lisalucier | 1 day ago

Hi, @lmcdonald1119 - wanted to touch base and see how your symptoms are this week? Have you been able to get some sleep?

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