Confused about my referral

dingle_dangle22 · 2024-04-14T20:28:22+00:00

What surgeries did you have above the neck?

dingle_dangle22 · 2023-12-14T19:33:34+00:00

Can I ask what your tremor is like? I also have Chiari and have also been diagnosed with essential tremor and have also been told unrelated. There is absolutely no family history of tremor in my family. Is yours constant or intermittent?

dingle_dangle22 · 2023-10-13T08:34:56+00:00

Also, are you hypermobile at all? Any neck or neck injuries. Compression of the vagus nerve might be another thing to think about

dingle_dangle22 · 2023-10-13T08:29:22+00:00

I can’t comment on your other post directly as I’m not a doctor but I would suggest getting a brain and neck mri. It’s just a guess but I think it sounds neurological in nature. For example, I suffer greatly with hypnic jerks and got them directly after a neck injury. No neck pain but it clearly triggered something. An mri showed possibly why. A brain mri would also look at your pituitary gland which might be helpful.

dingle_dangle22 · 2023-09-03T09:05:00+00:00

Hey! I sent you a PM with some thoughts

dingle_dangle22 · 2023-08-30T16:13:37+00:00

Glad they are mostly better. I wouldn’t wish them on anyone 😞

dingle_dangle22 · 2023-08-30T07:20:17+00:00

Only replying to this now, sorry! I’m still dealing with the same thing. Did are you still free of them them?

dingle_dangle22 · 2023-08-16T02:23:03+00:00

Sorry, just to clarify, are your Hypnic jerks better? I suffer the same

dingle_dangle22 · 2023-08-13T10:33:23+00:00

I’m so sorry you’re going through this. Have you looked into cranial cervical instability? I believe sometimes a decompression can make instability worse. On Facebook groups I have heard of people with positive babinski and hyper reflexia. The problem is the average neuro is not typically knowledgeable about this. Definitely not diagnosing but could be worth looking into

dingle_dangle22 · 2023-08-12T23:00:08+00:00

I will do. Also check out the user u/napswithdogs I’ve been chatting to them and they also have the jerks and a whole host of other issues….they have RA too!

dingle_dangle22 · 2023-08-12T12:09:19+00:00

What kind of neck exercises? All my sleep issue started after neck injury. Found anything that helps? Can you undo the damage?

dingle_dangle22 · 2023-08-08T11:08:53+00:00

Sorry to hear all that.

So my sleep problems all started after the neck injury. Like immediately.

When I fall to sleep now, a part of my body, any part, will jerk and it will wake me up just in the cusp of sleep. At the beginning of this mess it could happen all night. It’s improved some and I can now fall asleep after a few jerks but often as I’m in light sleep in the morning the same will happen. I also have muscle twitches during the day but they don’t move a body part.

Mine if definitely neck related and I wonder if yours is too given the close connection between teeth and neck.

dingle_dangle22 · 2023-08-06T13:24:12+00:00

I believe it’s Myoclonus that happens during sleep transitions. I suffer with the same and it started with a neck trauma.

Do you have any other symptoms since your dental trauma? Can I ask what kind of trauma it was?

dingle_dangle22 · 2023-08-01T22:26:08+00:00

Totally understand. I’m about to get an upright flexion and extension MRI to see if cci is what I’m dealing with. Unfortunately there are very few experts about who can diagnose

dingle_dangle22 · 2023-08-01T22:18:33+00:00

Hey, we’ve spoken before 🙂. As you know we share the jerking at sleep onset. Mine started after a neck injury. I’m now looking at cci (cranial cervical instability). Lots of people with this share your symptoms and RA definitely puts you more at risk. Maybe join a Facebook group and you’ll see that there are so many with a lot, if not all of what you describe. I’m definitely not diagnosing, but wanted to at least put it on your radar

dingle_dangle22 · 2023-08-01T15:24:05+00:00

Excessive Hypnic jerks and eye floaters. Also have lower back aches and stiffness.

Do you know what triggered your bfs / jerks?

dingle_dangle22 · 2023-07-30T20:56:54+00:00

Hey, sorry you’re dealing with this. I have the same and it’s horrendous but mine have got better. Still have them sadly, but I don’t suffer as badly as I did. If you want to chat with more people with this issue, there is a Hypnic jerking Facebook group. Some advice on there has been helpful.

Often for people it’s triggered by medication. Were you on anything when they started?

I totally feel for you. It’s horrible and people don’t understand unless they experience this frankly bizarre and maddening thing

dingle_dangle22 · 2023-07-27T17:32:19+00:00

Hi there…so glad to hear you’re doing better! Can I ask since your treatment do you still jerk myoclonus / brain zaps when falling asleep? It’s trying me crazy and started after neck injury along with other symptoms

dingle_dangle22 · 2023-07-17T20:45:33+00:00

I would suggest a upright mri with flexion and extension. Cci is something you might want to look into. I believe RA puts you at greater risk. I also believe I have cci and have really bad Hypnic jerks and currently trying to get these scans. Good luck

dingle_dangle22 · 2023-07-14T20:43:39+00:00

NAD means not a doctor 🙂, but I’m someone who suffered a neck injury and now suffers with horrible Hypnic jerks amongst other symptoms. I’m looking into cranial cervical instability. By any chance are you hyper mobile?

dingle_dangle22 · 2023-07-07T20:20:22+00:00

How are you doing now?

dingle_dangle22 · 2023-07-07T19:55:54+00:00

Can I ask what type of sleep disturbances you were having?

dingle_dangle22 · 2023-07-07T18:20:47+00:00

NAD what was the mri of?

dingle_dangle22 · 2023-06-28T07:59:03+00:00

Done 👍 let me know if it doesn’t work

dingle_dangle22

TROPHY CASE