Vertigo started my big health mess I am in....HELP :(

[HeidiLynnM]

Hello, this may be a long post, but I am trying to see if anyone out there could have a idea of what is going on with me. First off, I was diagnosed with fibromylagia in 2010. I have gone downhill from there. Yes I take meds for depression/anxiety.
I was away on a trip, and I started with severe vertigo. It would come, and go. It was to the point where I wasnt able to go to the places I wanted to see because I was so dizzy, and started to panic thinking I was going to pass out. I also started to get very sick to my stomach to the point where I just didnt want to eat. I am still there with the same. Just not hungry at all. That is when it started to get HORRIBLE. I had a very long trip home, and thank god I wasnt driving. I also started to feel like I was kind of out of my body.

Anyhow, I got home and it was so bad. The dizziness was controlling my life. No driving for me. I have become a prisoner of my home now. It let up here, and there. I was able to go to the doctors to see what was going on. First trip was ER. I thought I was dying. That lead to a ENT. In the meantime I have started to have severe facial numbness, head and also neck. Severe pressure. The headaches were also there but not severe. I thought my head was going to explode.

At this time, my face is numb from head to neck. I have severe pressure in my face, sinus area, and neck also. It sometimes feels like my throat will close up. (Not anxiety, I have already done the meds thing, doesnt work). My ears also have pressure, and feel like they have a lot of pressure in them. My speech, and memory have gone out the window. I have tremors also, worst in my left arm. I have had that for awhile. I get lost in my words that my family look at me like I am nuts.

I have been losing my balance, numbness of areas of my body all over. My eyes seem to be like everything is too bright. I get the chills/sweats a lot. I wake up everyday to this, and I have noticed that my phone doesnt ring anymore because I don't even have a outside life anymore. I am too afraid of driving due to the feeling of the off balance, and also out of body kind of feeling. I have children, and a wonderful husband. I so far have had a ct of my sinus, xray of my neck, ct at ER of head, Hearing test, Antibiotics for sinus infection. Blood work for thyroid. Hmmm I don't know what else. Oh the ENT told me I needed partials for the back of my mouth also. I cant even afford them. I feel like my life is in a big mess, and my health is making me become a whole different person because I have no life due to all of these problems. I have NO idea what is wrong........Help?!

[BeckyHorton]

I have chronic middle ear disease , mastoiditis, along with meniers disease.  I have vertigo a lot.  Mostly everyday. My throat also feels like even my necklace chokes me.  I had an infection that would not go away.  Had it for around 10 to 11 months this last time.  They took out the mastoid and put in an stapes implant so I could hear.  I still have problems with my eyes and light.  I have multiple other problems such as problems sleeping but even when I do, im still very tired in the day time.  Not all ENTs are alike.  I do know that ear problems mess with your throat, balance, eye movement, facial problems (like a stroke), light sensitivity, and pressure in and around the eye itself. I have been dealing with all of this my whole life.  You have rocks in the back of your head that can be out of place also.  I know that sounds strange but its true.  I think you have an autoimmune problem like I do.  Salt makes things worse.  Ear infections can kill you.  It will eat thru the mastoid bone to where your brain fluid can leak into the ear.  This is very dangerous.  Bout killed me. Infection also will eat the facial nerves and i forgot the nerve that is already gone.  It messes with my mind and sometimes I just dont know what Im doing or what has gone on while Im having one of these severe episodes.  You could have more than fibromyalgia goin on.  I would find an excellent ENT to go along with your other physicians.  My catscans came out normal with no tumor.  I also have tremors but not all o f the time.

[HeidiLynnM]

Found the old post!!!!!!! I looked on my profile, and found it. DUH!

[jacc123]

I started with constant dizzy feeling. I then started having couple of deconds while driving that I thought i would " black out'. This slowly progressed to longer periods where i would have to pull off the road until I could drive again. Went to ENT. Had all the ear tests. Went to internal medicine doc. Went to cardiacphysiologist. Tests done. Will see him for final results next Tuesday. Months of this. Went back to ENT due to severe vertigo lasting all day with little help from low dose valium and meclizine. He said it is Central vertigo where the brain does not register what the eyes see, ears hear, feet are, etc...I am now having MRI of neck for cervical vertigo also. Starting physical therapy for neck Monday. The weakness in whole body is extreme but no tremors. Will feel real shaky with episodes. The depression and frustration is intense. I am seeing about 5-6 different doctors now. i also have tachycardia and very low blood pressure. May God help us all.

[Londres70]

No problem listening dear.

With all these doctors' visits, ER, etc., and NO ONE ordered an MRI of your brain/head yet?  

I thought you had a Neuro appt.  That's the appt. I recommended you should try to get pushed up.  

Well...insist that this regular physician order an MRI with CONTRAST of your head/brain.  

[HeidiLynnM]

I also want to say THANK YOU sooooooo much for listening to me. I have no one I can talk to about this..My husband feels hopeless. I am also getting the sweats from hell. Lord help me.

[HeidiLynnM]

I did try to get in to see my doctor sooner, but the soonest is tuesday. I am going there first. He is a wonderful doctor, and he sees almost all of my family so I trust that he will probably be able to figure things out much quicker.
Here is the deal, I am getting the WORST sinus pressure, first it is in my head, then goes to my face, the sides of my jaw, my chin, then my neck. It even goes to my ears at times! I am thinking I am going that I am going to lose my mind :( I take stuff for the sinus, and it doesnt work. I have already been treated for a sinus infection about 2-3 weeks ago. No go, allergy meds, no go. I didnt see my normal doctor for this, I saw another one that said that I need to quit smoking (I really do, and I know how bad it is).

I didnt sleep one wink last night. I was so dizzy that I actually feel like vomiting. I feel like I am being tortured. I have made a list of all of this to show the doctor. I am not living. I have 3 children, a husband, and I can not even drive. I feel like I live on the couch, and just exsist. I want to cry my eyes out. I want to sleep, and not feel like the room is spinning, and my body is no longer mine. I have been to the er, the doctors, the er again by ambulance..........Am I going insane??????????

[Londres70]

Well...it would be difficult to say what is caused by meds and what isn't.  Let the physicians sort that out.  Plus, NO ONE can say "Oh, it was the meds"  UNTIL they thoroughly investigate the situation.  

When exactly is the June appt with the Neuro?  They can't say over the phone "Oh, you are having problems because of your meds. Keep your assigned appointment."  It is worth a try to see if you can get seen sooner.  If they say no, then you will have to wait.  In fact, I wouldn't mention ANYTHING about the meds over the phone and just try to get seen sooner dear.  Just say you are feeling worse, IF THEY ASK, which is the truth.  

Do call the Urologist and EXPLAIN THOROUGHLY about what happened to you.  

That Fibro diagnosis was a CROCK.  Doctors are using that one more and more when they 1.  Can't figure out what the heck is wrong with you.  2. Don't really want to further investigate your situation and assume LOAD you up on meds.  

[HeidiLynnM]

Thank you! Yes I am a big mess :/...I am praying that this is not all the stuff it could be, but I will be so glad to hear that they understand something! I will call tomorrrow to the urologist (need something different, threw out that medication!), and I will also call and see if I can get in sooner to see the doctor. I am afraid they will say this is due to the meds?! I wonder if meds could cause a lot of these issues?!

[Londres70]

OMG dear.  How long were you in the hospital?  Then, dealing with all these meds and having this happen.  Yeah, when will this end for you dear is the million dollar question.  

It is so hard to speculate what this can be.  I am thinking all over the board about what this could be (anything from something infectious that has done a number on your nervous system to Parkinson's and MS.  

When in June is the appointment?  I would check into having it pushed sooner if you can.  

You can PM me anytime you like.

[HeidiLynnM]

Last night I had to call a ambulence because I had a severe issue with two meds I was taking. I basically went into shock, and Od'ed. The new med, and the meds for my bladder, and that made my body soo soo bad. I was very sick.

I have my appointment in June, and family doctor next tuesday. I am very curious why my neck feels so swollen, and feels like my airway is halfway closed. The numbness and pain.........Oh Lord.....Does it EVER end? :(

[Londres70]

I will agree with Hilary1966 in regards if this worsens you should be seeking emergent care otherwise I would recommend waiting for the Neuro appt.  I am not sure how long you have to wait though.  

Well....keep us posted.  

[Dagun]

Heidi, I am sure this is all connected. Fibro is sometimes "used" when they don´t know what to think. I would not think that MS is very likely, but it would be on the list, but also there are SO many mimics to MS. I´m looking into Lupus now my self, but I´ve been thinking I maby have MS for awhile. But today I got a rash on my face, so that´s why I'm now reading about Lupus. So you see there are so many things this could be, so just go see a neuro to figure this out. I would not think you have to do it asap, this is not happening that fast. Just wait for the neuro appointment, and make sure you first write everything down that has happened, so he can easily get the "picture".
My best,
Dagun  

[Hilary1966]

Please see a neurologist as soon as you can,if necessary park yourself in your nearest hospital and refuse to leave until somebody takes this seriously.My symptoms were a little similar numbness loss of balance,i seen a neurologist on a Friday and was admitted to hospital within the week after MRIs showed mylitis of the spinal cord,I spent eleven days there with further MRIs of the brain, torso,lumbar puncture,heart echo,and eye specialist,and numerous amounts of blood tests were done,thank god I was lucky to be diagnosed there and then,it isn't an ideal diagnosis,mild ms,but at least now I know.Please trust tour instinct on this if you feel there is something wrong keep knocking on doors till somebody listens.Wishing you all the best
Hilary

[Londres70]

Dear.....just get to the Neurologist ASAP and get this sorted immediately.  I am sure you have been MISDIAGNOSED.  

I was thinking about MS and Parkinson's briefly, however, I don't want to be throwing a diagnosis out there because I am just not sure, however, I am sure this is Neuro.  

Keep us posted.  You are too young for all this.  

[HeidiLynnM]

Forgot to add that I can never seem to find the words I need or think of what to say about something I have recalled. My speech has changed A LOT.

[HeidiLynnM]

Ok, I started going to the doctors because I was so so tired all the time. I mean body tired. I also hurt everywhere you can imagine. It is a aching pain that is always there. I get it a lot in my legs, head, and my arms. Lord do I ever.....Even to my hands where they feel like they are swelling, but they arent. My balance was never like this, I am not sure where this is coming from.  My family doctor told me most likely it was fibromyalgia. I went to see a reumatide (sp) doctor. He also ruled me the same. That is how my diagnosis began. I was offered meds for it, and I tried lyrica....it is horrible. I take tramadol for the pain, and also for my back. (I had surgery in september l5s1 fusion). I also have insomnia where sleeping...hmm when I do sleep it feels like I never did or sometimes it is just a few hours.

I have been telling the doctors about my left hand tremor, and they always said anxiety. I left it at that. Well now the right is horrible. Typing this isnt easy by any means. My right arm also has aways had tremors. Now it is both hands, and one arm. Talk about embaressing at 32.

My physciatrist made the referral to the neurologist. She was taking my pulse, and noticed just how bad it is. I feel like I am no longer me, but pain, pain.
Thank you for the info on the mri Londres70. I just dont know what to think. My sister inlaw has Ms, my cousin has Ms. I have a lot of the same issues, but the tremors are something I havent seen with them. My neck says I have some arthritis in it, but my lord it hurts.
Forgot to add that I have a awful bladder......Cystitis. Lovely! Lol

[Dagun]

Heidi, some peoble that are told they have fibro, turn out to have something else. I would like to hear what symptoms you have that gave you the fibro dx? Because there is definetly something else going on and all that you thought that was because of fibro can be a part of this bigger neuro thing going on. So do tell..

My best,
Dagun

[Londres70]

I agree with you....this is NO Fibromyalgia.  

[Londres70]

The contrast will make the imaging more clear and pronounced.  

[HeidiLynnM]

Dagun, I read your post. I have the same thing a lot with my neck. It is actually starting again just now. Ugggghh!!

[HeidiLynnM]

Thanks guys! I had vertigo actually before I left, and it got worse when I was in florida. Yes I am not going back to the ENT. He is a joke! The tremors started in my right hand for a very long time, and now the left hand is so bad that I cant even hold a icecream cone! It is embaressing. I hope that we can figure this out because I dont think this is all fibromyalgia related. I do also have chronic fatigue. I am also sooooo tired of my balance being so bad! I feel like a swaying clock! LOL

I do believe that I do have some sort of sinus thing going on for sure! I get sinus infections a lot. My vision is also messed up, things seem to get too bright, and my eyes feel like they are so wide open that they will look like one of those baby dolls. I am very interested in getting the MRI, why with contrast? Just curious?

[Londres70]

Have this Neurologist sort this out; an ENT Specialist will definitely be of NO help. This is definitely neuro in my opinion.  

I would also recommend an MRI of the brain/head WITH contrast.  

May I ask where you were visiting when all this started?  I am not sure if this was some kind of viral, bacterial or parasitic infection you contracted while you were on your trip.  

Please keep us posted.  

All the best dear.

[Dagun]

Heidi, I also have this tight neck feeling, it is like I am not in control of my muscles in my neck and they maby get "lazy" and just fill up the space! Sometimes I can't swallow the saliva.

You could read about it in my last post or my journal (my profile page). I think I have fatigue, two times it has been really odd like yours, I was driving and had to switch seat with my husband, and once when we were going out and suddenly I had to lay down and could hardly talk to my husband witch was SO surprised (pretty sure that was fatigue) and then I am also just very often tired. Please let me know how your neuro appointment goes.

My best,
Dagun

[HeidiLynnM]

Dagun,
Thanks for the positive feedback! I have noticed something I forgot to mention also. My throat/neck/  seems to swell right up, and it goes right up to my jaw. It almost feels like I am being choked, it is very odd. I was very scared when this started because I thought I was having a reaction to something, but allergy meds doesnt take it away. I am very interested in seeing what the neurologist has to say. I am soo so tired of feeling like this. I also have severe fatigue. It is kind of funny because my husband, and I were sitting at the table, and I was falling asleep!