Don't know where to start - feeling confused

[lookingforanswers4]

Hi guys,

I have been sick for 7 years and still don't feel like I have answers. Then, in July I randomly started feeling like I was on a rocking boat 24/7, and it hasn't gone away since. It is so bad I don't really have any quality of life and it gets so bad I need to lay down but laying down seems to make the sensation much worse.

I have been diagnosed with; lyme, mold illness, mast cell, sibo in the past and reactivated EBV previously. None of these treatments have helped and often times they just make me feel worse.

I feel like there is no way out and I will never be the same again, but recently it was brought to my attention that this sounds a lot like mdDS or CCI.

I dont know anything about these conditions and was wondering if someone can help. What is the first step getting these diagnosed or looked into? How do they differ? Is there treatment?

 

[Starsister]

@lookingforanswers4 Ive had the rocking boat sensations. Part of vertigo.. Ive had ME for 35 years but the the vertigo only started 4 years ago. Try a vestibular physical therapist. And I went to ENT and neurologist for tilt table test. No good answers yet but some find help from vestibular physical therapists. Best of luck to you. You might title this or keyword Vertigo fir better answers.

 

[nyanko_the_sane]

Have you researched this:
https://my.clevelandclinic.org/health/diseases/15227-vestibular-neuritis

I have tinnitus and sometimes I experience vertigo when I am very fatigued.

 

[lookingforanswers4]

@lookingforanswers4 Ive had the rocking boat sensations. Part of vertigo.. Ive had ME for 35 years but the the vertigo only started 4 years ago. Try a vestibular physical therapist. And I went to ENT and neurologist for tilt table test. No good answers yet but some find help from vestibular physical therapists. Best of luck to you. You might title this or keyword Vertigo fir better answers.

Thanks for the feedback. This isn't vertigo though. The room doesn't spin. It just feels like I am moving when I am not, like I am on a rocking boat. Vertigo is a different sensation.

 

[Starsister]

Thanks for the feedback. This isn't vertigo though. The room doesn't spin. It just feels like I am moving when I am not, like I am on a rocking boat. Vertigo is a different sensation.

 

[Starsister]

@lookingforanswers4 What I’ve understood from my drs and research however is that the rocking sensation is also a form of vertigo. I’ve had where the room tilts 45 degrees and I fall over, the ones where room spins.. a head over heels tumbling sensation.. where it can feel like I’m being tackled to floor by someone, but also the rocking boat ones. They all started about 4 years ago and am told by my drs they are related. It’s been frustrating to learn about because there seems to be confusing and conflicting info out there about vertigo, and different causes of vertigo.

 

[SickOfSickness]

You could see a vestibular disorder specialist.

 

[Heartl]

@lookingforanswers4
I have had ME/Chronic Fatigue Syndrome for at least 20 years. This has been going on for me for about 2 1/2 years now. I feel like I’m on a boat most days. For me it came on suddenly with menopause. My doctors tried to get me to take Lyrica but am not on board for that. I feel like my neck and all ligaments are affected . I don’t know much about EDS so not sure if it can be triggered later in life. I’m currently doing research on this 😊