It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Inner Ear Disorders Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 08-27-2007, 07:18 PM   #1
Junior Member
(female)
 
Join Date: May 2007
Location: Atlanta
Posts: 44
olwynUFO HB User
My journey to a correct, non-inner ear diagnosis

Please forgive this long post, but if it helps at least one person it will be worth it. I havenít posted on this board recently because seven weeks ago I got what I consider to be a ďcorrectĒ diagnosis for the symptoms that have tortured me since the beginning of May, and although I was originally told it was an inner ear disorder, it isnít. I have been waiting to post until my doctor says, ďIím 100% sure this is it and thereís nothing else,Ē but I donít want to wait any longer because someone might benefit from this information. I am sure that most people on this board DO have inner ear disorders; Iíd just like to share my story of how I was originally diagnosed with inner ear problems when my diagnosis is actually something else, and that ďsomething elseĒ seems to have affected my ears somewhat. Hereís what happened: Back in May, I woke up with humming in my head. At the same time, two of my toes went numb, and one week later I went from feeling healthy and happy to feeling like I was on my death bed. I am not exaggerating. I had fatigue, nausea and weakness unlike anything Iíd ever had before in my 48 years. My doctor said I had a virus, but it didnít feel like a virus to me. She referred me to an ENT who told me I had VN and gave me Prednisone. I didnít want to take Prednisone, and the ENT wouldnít see me again until I did, so I saw an otoneurologist. The otoneurologist told me that I did not have VN but instead had BPV because I got nauseous wheneven I lay down. He thought I might also have symptoms of migraine. My hearing tested fine, and my VNG results were normal. The otoneurologist referred me to a neurologist and an OT. The neurologist said there was no evidence that I was having headaches (though a second neurologist told me there was). The OT said the only thing she could find was slight nystagmus when I sat up from lying down. I was unaware of this as my vision wasnít moving, so I had no idea my eyes were. What I felt when I got up was an electrical buzz in my head with slight nausea. It was a woozy, lightheaded feeling. The OT said, ďWhatever you have, itís affecting your vestibular system a little,Ē and she gave me some exercises to do twice a day. I still do them because I donít think theyíre hurting me and may even be helping. From the day I woke up with the humming in my head to the day I saw the OT, nine weeks of h*%$ had passed. Like everyone here, I spent a lot of time researching inner ear disorders on the Internet. But I kept trying to figure out if my symptoms (EXTREME fatigue, weakness, nausea, electrical brain zaps, leg twitches, humming in both ears, numb toes, trouble sleeping, migraine aura without the migraine, breathlessness) could be due to something else. After all, I didnít have a lot of the symptoms that everyone on this board talks about, like vertigo and imbalance. It got so bad that I had to stop working. I didnít have the strength. While I was seeing all these specialists, I continued to see my regular doctor. She was not actively looking for answers to my ongoing symptoms. I prayed every day for help and looked for answers on my own. One day when reading through the postings on the inner ear board, I read about vitamin B12 deficiency and looked it up. B12 deficiency is found commonly among older people and people who are vegetarians or vegans (Iíve been a vegetarian for ten years and a vegan for three), but young people and non-vegetarians can develop it also if they have problems with absorption of B12. The symptoms of B12 deficiency immediately caught my attention because they sounded exactly like my symptoms. I made an appt. to see my doctor to ask her to test me for it. She was unavailable on the day of my appt. and I was asked to see her colleague. I didnít realize it, but my prayers were about to be answered! The new doctor spent two hours listening to me describe what had been going on for the previous two months. She listened to my family medical history, and she presented me with a list of tests that we were going to do. She added B12 to the list. She said, ďIím bored with dealing with sore throats. I am excited to be able to help you solve this mystery. Together we will figure this out. I promise.Ē To this day, I am still being tested for all sorts of things so we donít miss anything, but it took all of one week to have a diagnosis of B12 deficiency. The test results require a little explanation in case you ever have your B12 tested, because doctors often tell you that your reading falls within normal limits when it doesnít. (Theyíre not lying; they just donít know.) Although my reading fell within normal limits (329 on a range of 200 to 1100 mcg), five to ten percent of people with a reading between 200 and 400 have symptoms and require treatment. If you are ever tested, find out your exact reading; donít just accept ďnormalĒ for an answer. Some doctors believe you should have treatment if your level is below 500. Vitamin B12 is necessary for the nervous system to work properly. A deficiency can be easily managed with B12 injections. As I said, I hope this helps at least one other person. I appreciate all the help and support Iíve gotten from this board. The postings here have gotten me through some tough times. I visit some other boards now as well as a website in the UK, but I keep coming back here to see how everyone is doing. I will keep you all in my prayers.

Olwyn

 
Sponsors Lightbulb
   
Old 08-27-2007, 07:46 PM   #2
Veteran
(male)
 
Join Date: Nov 2003
Posts: 468
tummy2 HB User
Re: My journey to a correct, non-inner ear diagnosis

Olwyn,

I am glad you have a diagnosis... Have you had any treatment and if so, are you better?

 
Old 08-27-2007, 09:51 PM   #3
Junior Member
(female)
 
Join Date: May 2007
Location: Atlanta
Posts: 44
olwynUFO HB User
Re: My journey to a correct, non-inner ear diagnosis

Thanks for asking. Yes, I'm being treated with injections of cyano B12. My husband injects me in the arm. I'm improving, but it's a slow process, unfortunately, with ups and downs. Just when I think I'm on the road to feeling better, I feel awful again. Some of my symptoms scare me. After having loading doses of B12, I'm supposed to be having one injection a month. But I haven't been able to get through one week without my symptoms returning, so I'm getting two injections a week. Since B12 cannot hurt you and you cannot overdose, my doctor is okay with this treatment. I haven't worked much in the last two months. I'm fortunate in that my boss is being understanding and accommodating. On Sept. 1 I'll be working just ten hours a week, from home, and I'll increase my hours whenever I feel well enough. It really messes up my budget, but since I've been sick it's become crystal clear that health is more important than money ever could be. I knew that before, but now I really, really know it!

 
Old 08-27-2007, 11:14 PM   #4
Veteran
(female)
 
Join Date: Jul 2007
Location: tx
Posts: 461
alexiwildchild HB User
Re: My journey to a correct, non-inner ear diagnosis

hey! mine was low when i was checked a week or two ago. i've gotten one shot so far, and have been taking cyano sublinguals 1500mcg every day since. i actually seem to not feel like sleeping ALL day. it still may have something to do with inner ear on my part, but haven't got a diagnosis as of yet, so i am doing the B-12 and VRT's to cover both grounds. i think mine was like 280 or 290. the nurse told me that it was "low normal". and that the range was 260-1100....so yeah...i am going after it to get it to normal. i will probably be getting another shot soon too. i've heard the methyl sublinguals are supposed to be better, so i am going buy and use those instead of the cyano that i have now. i do see an improvement in my energy level somewhat though but none with the 24/7 weird vision junk as of yet.
good luck to you!

Last edited by alexiwildchild; 08-27-2007 at 11:18 PM.

 
Old 08-28-2007, 02:07 AM   #5
Senior Member
(male)
 
Join Date: Jul 2007
Location: NT, Australia
Posts: 108
amww HB User
Re: My journey to a correct, non-inner ear diagnosis

i must ask.. why does your neuro think you must have "evidence of headaches" for migraine to be the cause of your symptoms?

i hope the b12 treatment works, but if it doesn't, it would be worth seeing someone who knows something about migraine-associated vertigo.

 
Old 08-28-2007, 04:52 AM   #6
Inactive
(male)
 
Join Date: Jan 2003
Location: Chester Springs, PA, USA
Posts: 1,674
Subs30 HB UserSubs30 HB User
Talking Re: My journey to a correct, non-inner ear diagnosis

Hi Olwyn

Very interesting!

No doubt that B-12 problems can be the culprit and affect ur balance---glad u tracked/are tracking it down....


 
Old 08-28-2007, 05:58 AM   #7
Junior Member
(female)
 
Join Date: May 2007
Location: Atlanta
Posts: 44
olwynUFO HB User
Re: My journey to a correct, non-inner ear diagnosis

Thanks, everyone, for the words of encouragement. This is what helps make this board so great.

Admw,

My neurologist didnít question my low B12 diagnosis; he thinks I have migraines in addition to that. I donít know why specifically. He said that migraines can manifest in different ways and that I donít have to have headaches to have migraines, which I knew. Right now I can only guess that he based his diagnosis on the symptoms I shared with him (humming in my ears, feeling of electricity running through my head, random spots of head pain Ė which have gone away by the way Ė lasting a second or two). I donít even particularly agree with him, but since his solution is so simple (B2), I feel I have nothing to lose and everything to gain. If I indeed have migraines, then my feeling is theyíre caused by the B12 deficiency (I also have low B6) and will hopefully go away once the B12 does its job. Some people on the pernicious anaemia website deal with frequent, even daily, headaches, which they feel are caused by their vitamin deficiency. As far as MAV, I know that anything is possible. I donít have vertigo or dizziness, but two of my brothers have Meniereís, and my doctor is aware of that.

O.

 
Old 08-28-2007, 06:31 AM   #8
Senior Member
(male)
 
Join Date: Jul 2007
Location: NT, Australia
Posts: 108
amww HB User
Re: My journey to a correct, non-inner ear diagnosis

That's an interesting background!

Have your brothers lost their hearing over the years?

Quote:
Originally Posted by olwynUFO View Post
Thanks, everyone, for the words of encouragement. This is what helps make this board so great.

Admw,

My neurologist didnít question my low B12 diagnosis; he thinks I have migraines in addition to that. I donít know why specifically. He said that migraines can manifest in different ways and that I donít have to have headaches to have migraines, which I knew. Right now I can only guess that he based his diagnosis on the symptoms I shared with him (humming in my ears, feeling of electricity running through my head, random spots of head pain Ė which have gone away by the way Ė lasting a second or two). I donít even particularly agree with him, but since his solution is so simple (B2), I feel I have nothing to lose and everything to gain. If I indeed have migraines, then my feeling is theyíre caused by the B12 deficiency (I also have low B6) and will hopefully go away once the B12 does its job. Some people on the pernicious anaemia website deal with frequent, even daily, headaches, which they feel are caused by their vitamin deficiency. As far as MAV, I know that anything is possible. I donít have vertigo or dizziness, but two of my brothers have Meniereís, and my doctor is aware of that.

O.

 
Old 08-28-2007, 07:05 AM   #9
Junior Member
(female)
 
Join Date: May 2007
Location: Atlanta
Posts: 44
olwynUFO HB User
Re: My journey to a correct, non-inner ear diagnosis

One brother passed away last year. He had a hearing loss and wore a hearing aid in one ear. I've never asked my other brother about his hearing. He doesn't wear a hearing aid and his symptoms don't seem to be as severe.

 
Old 08-28-2007, 07:08 AM   #10
Veteran
(male)
 
Join Date: Nov 2003
Posts: 468
tummy2 HB User
Re: My journey to a correct, non-inner ear diagnosis

Just my 2 cents, but it is still possible that you have an inner ear condition. As with any deficiency, when it is corrected, you should feel better immediately, unless your b12 is fluctuating so wildly, but with any defieciency, it takes quite a bit to cause those symptoms you suggest. I dont mean to discount your theory on b12, and I hope it helps you. b12 is also used as energy boosters.. They do helpw ith the fatigue some and I know ppl here are taking vit b to help with the labs. But if your having ups and down days, even if it is Labs, it looks like you are getting better.

 
Old 09-17-2007, 12:14 AM   #11
Newbie
(male)
 
Join Date: Aug 2007
Location: Karchi,Pakistan
Posts: 9
asif139 HB User
Re: My journey to a correct, non-inner ear diagnosis

I am so glad you got the B12 diagnosis. This thing really kills it wrecked havoc with my life for 4 months before i got diagnosed. I am into my fifth month of injections and still have my problems. One interesting thing is that after doing good for initial couple of months i started feeling down again and had constant tinnitus in my ears with slight pain and no hearing loss. I visited the doc and he thinks i have some tube problem going on. i hope this goes away quickly and fully back to normal again. i pray for you all as well. Keep fighting.

Thanks
Asif Mushtaq

Last edited by asif139; 09-17-2007 at 12:15 AM.

 
Old 03-18-2008, 12:46 PM   #12
Newbie
(female)
 
Join Date: Mar 2008
Location: Bethesda, MD, USA
Posts: 3
Dloi HB User
Re: My journey to a correct, non-inner ear diagnosis

The next question is, why the Vitamin B12 deficiency? A common reason for a B12 deficiency is linked to a sensitivity to wheat in the diet, that leads to an allergic reaction in the small intestine, that results in Vitamin B12 not being absorbed there. The test for this condition is a test to see if there is evidence of the allergic reaction in the small intestine. They test the feces, and may also do additional tests to confirm whether yours is a genetic condition that others in your family may be susceptible to.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Baja's Journey "THE ROAD OUT" Oxycodone, Hydrocodone, Alcohol Addiction bajaboats Addiction & Recovery 141 04-09-2008 09:35 AM
Subtalar joint implants to correct Pttd jana65 Bone Disorders 0 01-18-2008 05:52 PM
My Foot Surgery Journey Mary51493 Foot & Ankle Problems 16 11-02-2007 08:41 PM
Frustrated in this TTC Journey BabyHope8179 Trying to Conceive (TTC) 5 04-03-2007 04:50 PM
Continuation of "another journey"...... MKMMJ Hepatitis 0 10-15-2006 10:23 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 10:06 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!