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Avatar universal

Another question to an odd happening!

Hello all,
  It is Theresa again. I am in hopes that someone can say that they know what I am talking about and have heard of this or have had it happen to them!!
And for those of you who dont know me I have MS and have had for several years. And like most of  us in the "MS family", we never know what wierd stuff tomorrow will bring !

In the last month I have had a very odd thing happen about 9 times thus far. And when I told my Neuro she said "Huh", okay ???? ..... As you can tell,"NO" help there!

Anyways the first time it happend I was eating dinner with some friends and family at a dinner. I was sitting down and I felt kinds of dizzy and then all of the sudden I could not hear and felt as though I was being squeezed from the top of my head down and I could not hear very clearly, everything sounded like I was underwater and I felt ill and as though I were in quick sand. My whole body felt extremely tired and weak. This lasted for a good 10- 15 min. My family and I got up and left for fear I would be sick.

The symptoms  left on the way home and everything was fine. Other than  leaving me shaken...That was the first time. But as I said it has happend at least once a week since than, And sometimes I see a white light, And if this makes any since my brain feels like it is moving or jumping track. and I sware I feel like a popping noise is comming from the top of my head and than I loose my hearing and feel like someone is sqeezing me downwards. A few times I have had a severe headache afterwards, but I also think that goes along with the panic attack I give myself afterwards..... SCAREY!

These attacks never come at the same time as a matter of fact I was woken from one of these attacks and I felt so disoriented and weak. It is not a sinus infection ear infection or the start of a miagrain. It is not from an alergic reaction and the times that it goes away differs also. And I was told that it is not from any of the three meds I take by my Neuro.

They leave me feeling wiped out and always wondering do I call the Dr. everytime it happens, do I seek ER attention when it happens? Am I really loosing it?

If you have ever heard of or have  experienced this please let  me know and what you know about it?

I am seriously considering a new Neuro as I feel like I leave with more questions than I get answered ,as I am sure we all have experienced that a time or two in our travels with the medical profesionals. But what do we do...hmmm?

Thank you all for reading this and for those who answere these forums . It really does help to know that we are not going through these difficult times alone! Keep on doing what your doing and smile because there really is someone for everyone!

                               Theresa
9 Responses
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369643 tn?1199795591
Thankyou so much for your kind and lovely words, yes i have had the experience of my brain moving and so forth but i have not had the ear experience and the popping one well that is bount to scare the living daylights out of you, i too am going to start keeping a diary of things as sometimes things are hard to remember and explain afterwards, mind i have had some strange experiences

great advice from the Den Mother Quix i too think that may be a good idea to have repeat mri etc as if something new found this could certainly explain the situation for you Theresa

I most certainly will let you know if i do come across anything in regards to this and keep you posted so please keep in touch Theresa and let me know how you are coming on, i do hope you get some answers if not like you said we will just have to bounce stuff off of each other, hey thats what friends are for right

take care Theresa and i pray you get answers in this and i pray for you

luv David.




Helpful - 0
Avatar universal
Hello David,
           Well we may not know why it happens, and maybe we never will? But at least there is some comfort in knowing that we are not the only ones that it happens to ! At least I certainly do feel comforted in  knowing that. I have had MS for sometime and still can not get over how from week to week I feel diffrent or the new symptoms I have. I just shake my head write them in my pain diary (that my Primary PC suggested and it helps alot when trying to tell the Neuro whats happend from appt to appt....) and I move on.

But there are some that really rattle me and are more serious like this head thing. And when I did not get any info from the Neuro I felt defeated. And then I just happend to try the ASK.COM and stumbled on this forum.

It was a devine intervention if you ask me!..... Something that was ment to be! .....And I am so thankful and I truely believe that the knowledge that other people share on here may not be an exact likeness of what another person has and or a cure, but they certainly can help mend a soul and make on feel more at ease and a bit more settled.

It certainly has helped me by just reading some of these forums and I want to thank ALLof you who put your pain and struggles and knowledge out here so that we all may learn and cope and heal from them. You generosity goes way beyond the norm and someday you will be rewarded.

No good deed goes unnoticed ! Thank you, thank you , thank you !

I hope that we do get to the bottom of this David, as it scares the you know what out of me! But if we do not than at least we have each other to bounce stuff off of.
Please keep me posted and let me know what or of if  you find anything out and I will do the same.

Until than keep on keeping on and I look forward to hearing from you again.

                  Your new friend,
                                   Theresa
Helpful - 0
369643 tn?1199795591
I also experience these strange feelings in the top of ma head too and min sometimes feels like i am moving side to side swaying so to speak or feels like ma brain is moving side to side im pleased youmentioned that athough i am like you clueless as to whats going on, i get strange feelings i just cant describe and am totally exhausted

luv yas David.
Helpful - 0
Avatar universal
I am not insane, I am not insane, I am not insane.....Halleluia!...lol

As much as I hate the fact that there are you who have had this "attack" as well I can not tell you how much better I feel knowing that I am not the only one! And there is something going on!
I can not thank you all enough for that! You truely made my day!

I do indeed think that I need a MRI of the brain AND spine, with and without contrast.And have said this as a matter of fact to my Neuro, and she said that she did not feel it was needed . That even if there were more plaques the treatment would be the same.
So what do I do in that case? ....(I know it is more than likely time to  find another Neuro, trust me that is almost where I am at, but Gosh I hate doing that! Pain in the Butt!)

Again thank you all so much for listening to me and reading these forums and for adding your comments! You are all awesome and have dried many a tears with your words!

And yes indeed I will keep you posted.

                                              Theresa
Helpful - 0
333021 tn?1207759633
Theresa,

I had a similar, but less extensive, experience a few nights ago. I was sitting at computer I got an eerie feeling , then all of a sudden my hearing was shut off. After a second or two realized it sound was not totally gone just muted. And I had the feeling of being under very calm , clear water.  several minutes later , back to normal.

It was scary for me , I can't image how scared you must have been and still are, with the popping and feeling like your brain is moving . I hope you get to the bottom of this whole thing and soon.

Good luck     :)   Prayers ands Hugs       Jo

Helpful - 0
195469 tn?1388322888
The symptoms you talked about, I have also experienced before.  It has never been explained to me by my Neurologist.  (I also have MS)

I do think that it's time for you to have a repeat MRI of the brain AND spine, with and without contrast.  Which I believe; if you have an MS diagnosis, the brain AND spine should always be done, whether you are having symptoms of problems in your spine or not.  Don't you agree?

Keep us posted, will you?  Feel Better!

Heather  
Helpful - 0
Avatar universal
I looked back om my pain diary and I have had only 2 migrains with these attacks after the second and fith time. Other than that the only thing it left me with was weakness and exhaustion. I was in the hospital a month ago and had every test under the sun after I was racked with a muscle spasm that was so painful I passed out !....Yah that was fun !!! .....Not !

But all tests came back ok other than my potasium level was very very low. Could this be causing the problem ?(along with the bad spasms?) And  if so why has the Neuro not been concerned enough to want a blood test done?  

And she has not had a repeat MRI in over a year. The docotor I was with before had me set up a MRI every six months.Unfortunaley we moved 5 states away and I had to change Doctors.

Thank you so much for reading my post I really appreciate it!

                                     Theresa
Helpful - 0
293157 tn?1285873439
Hi there, I'm not yet Dx, the Dr says probable MS, my first symptom about two years ago was dizziness, but not the fainting king.  This one is like a drop attack.  

The room moves back and forth and if I try to move I fall over. I feel like I have to hang onto the chair or couch if I don't I fall over with dead weight.  Very dizzy, nauseated and the weak and tired for a few hours and out of it for a few days.  All the specialist are confused with these spells?  

I've had this about 9 years ago, it went away after a few months.  I've had ENT specialist test done (twice) and they said not Menierres or my ears?  It came back two years ago and I went to the Dr, Neuro, ENT, Rheumo, hospital a few times (ER) and hospital stay.  EEG, ENG alot of test in the hospital stay for two weeks.  still no answers?

I have alot of pain in my joints, ankles, wrists, shoulders, hands, neck, headaches, double/blurry vision, flashing lights in my vision, tingling and pains in my left leg and calf, down to my toes.  Left arm is also sore and heavy at times. I now walk wobbly...need a cane, if I go shopping, I've laying down for the next few days in pain.  Off balance all of the time and can't find the right words at times or say the wrong ones.  

I have had two MRI, the lesions are not MS TYPE?  I'm waiting for a C Spine MRI now.  I've had a LP and Bone Marrow test....the BM showed granulomas, the Dr aren't not sure why?  the LP was neg.  

my blood test are ANA positive, CRP is high, 2 monoclonan bands, Sed rate 74...my GP thinks either Lupus or MS but isn't sure so he doesn't want to give me any treatments other then Tyn 3 for pain and Celebrex for inflammation.. also Pariat for GERD..

Sorry for taking so long with this, it's like once I get going I can't stop hahahaha....so yes, you are not alone with this.
Helpful - 0
147426 tn?1317265632
whoooa!  My first thought before I am off to bed.  Could this be a migraine aura of a different type than you have had before?  New lesions have been associated with onset of new type headache.  I would recommend a new MRI with and without of your brain.

A second thought is a partial complex seizure, but it is lasting a little too long.  That would speak for an EEG.  Not a bad idea.

I'll think some more on it.  Quix
Helpful - 0
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