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Hello Friends - Update

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Old 05-31-2006, 01:58 PM   #1
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gloria2936 HB User
Hello Friends - Update


I just wanted to pop in and say hello as it has been quite awhile since I've been on the boards. The much needed break from the boards has been helping me tremendously. I believe that I was causing myself too much grief from reading too much into negativity as well as just feeling so awful for others who have had this so much longer than I. I'm in month 16! I was becoming not only an anxious and depressed person, but very bitter. Mad at everyone who was well and didn't appreciate it and just mad at the world in general. I'm not that kind of person or the old Gloria wasn't that kind of a person. I can honestly say that taking a break from the boards was good for me as I do believe it has helped my mental health tremendously. I can't say that the boards didn't help me tremendously because they did in other ways and they gave me a chance to vent. The boards provided great information, support when I really needed someone to listen to me and great advice. I've made lots of friends who understood me and some very good friends I keep in touch with privately.

Now for my update, as I already said, my mental health is improving. As far as my illness, I have noticed a continuous gradual incline in overall improvement. It hasn't been night and day, but looking back to last year at this time, I could barely get out of bed. I was so awfully sick. The headpain and pressure was unbearable. Much of my symptoms have gone at this point such as the ear fullness, fluttering, cross-eyed feeling, 24/7 dizziness has disappeared (I just get little blips here and there and usually it's when I'm in a busy place), buzzing feeling in my head, severe nausea and throwing up, and the list goes on.

I still suffer from some mild headache and head pressure, neck pain on and off, slight blurred vision and bad tinnitus. The dizziness is very rare now and I have no brainfog at all anymore. I still have a very mild weird feeling in my head or ears that I know something is not quite right, but with time I hope it will disapate too. I suppose what bothers me the most now is the tinnitus and vision. Most days I cope with the mild headache and pressure and some days it is barely there. This is coming from someone who experienced every symptom possible and was very ill the last 13 months out of 16.

I do believe conquering the anxiety and depression has helped to speed the recovery process and is probably why I'm seeing greater strides now. Mornings are still tough, but once I get going, I feel pretty good. Only occasionally now do I feel like I could just stay in bed all day as opposed to feeling that way 24.7. I push and push myself everyday, and I don't put off making plans anymore. I make the plans and go with the flow. I don't think too much about going in stores anymore as I figure if I feel dizzy then I do. There is nothing I can do about it so why get upset. Most of the time it is just some mild vision problems I incur when shopping, but I figure the more I push, the better I'll get.

So with this all said, I hope it has answered a few of the more recent posts that I scanned (dizzyrascal). The recovery process doesn't seem to be night and day. I believe it is just a continual improvement upwards that takes a very long time. I did get lots of colds and sore throats since the beginning of this, but I have done a lot to improve my immunity and don't get as much anymore and seem to recover from things much quicker. I've noticed this over the last 6 months.

Lauren, I think it is great you pushed yourself at your brother's wedding and that is how you will get through this. My husband throughout all this would pull me out of bed kicking and crying (literally) and force me out. I believe it has been the backbone of my recovery thus far and I always felt better once I got out. I left things many times crying because of the spaciness (brainfog and dizzies). I would be walking through stores with tears rolling down my face missing my old self and hating the people there that had no health problems but yet would complain about standing in line at a checkout for an extra few minutes. I'd stand there all day if I felt 100% and be very happy I was able to go out shopping. I stopped caring what others thought as no one who hasn't experienced this stuff can relate and truly know how bad it really is. I do as I please and am able to do and don't care what others think. What is important is how I think and feel at this point. I've had a family member tell me once to snap out of it. If I could just snap out of it, I would have 16 months ago. Someone else said maybe I was exagerating the severity of it. This doesn't even include all the poor doctor experiences I had. So the bottom line is, push yourself as much as you can when you can and worry about how you feel, not how others perceive you.

I guess the bottom line is you can and most likely will recover from this. I know I'm better. I'm not saying I don't ever feel like there will be an end to this insane lifestyle as I still have moments of breakdown (especially from the tinnitus and vision), but things are so much better than last year at this time so hang in there.

I honestly believe, people like Subs who recovered fully from this, it has alot to do with how we deal with this mentally. Take one day at a time, you'll get there.

Special hellos to Howie, Scott, Subs, Jill, Joy, Dizzyblond, Firechick, Sherri, Elizabeth, Tummy2, Hbep and JB (Hope I didn't forget anyone). Hope all of you are doing well.
CL - Hope your new exercises (therapy) are helping you.

I won't be checking the boards again anytime soon as I want a full recovery and don't want to get into a routine again, but I promise to check back in a few months and I hope I can share even better news with all of you. I've dreamt for a long time about writing a full recovery post and I hope that will be my next post here.

Take care and get well everyone,

P.S. - sorry for grammer/spelling errors, my son's waiting for me. It feels good to be able to do a little more with him and I'm lov'in the warmer weather.

Last edited by gloria2936; 06-01-2006 at 06:51 AM.

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Old 05-31-2006, 02:50 PM   #2
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dizzyblond HB User
Re: Hello Friends - Update

Great to hear from you, Gloria! Sounds like things are really progressing well, and I am SOOOOOOOOOOOOOOOOOOOO happy for you!!! How many times did we post each other saying, "One year from now, we'll hopefully be looking back on the worst of this!"? It's hard to believe that we're at the 1 1/2 yr. point with this stuff, but you are right - gradually, gradually, gradually, life like we once rememebered it is coming more and more into focus!

Am curious as to whether you're still doing VRT and taking the Klonopin. I posted a few weeks ago that after a really frightening encounter with the possibility of cancer last month (biopsy, surgical consult, the whole works...) - it just seemed to erase any qualms I had about taking my daily low dose of valium. I had to come face to face with the fact that life is so short and unpredictable - and for as long as I'm here, I want to truly enjoy it to the best of my ability!!! I will ease off the low dose slowly, and in the mean time, live my life as close to normal as I possibly can.

I realize you may not read this for another couple of months, but if you happen to check in, I just wanted to say hi, and tell you it was great to hear from you!!!

Take care - XOXOX ~ Robin

Old 05-31-2006, 03:50 PM   #3
Join Date: May 2005
Location: NYC
Posts: 306
jbbrocky HB User
Re: Hello Friends - Update

Gloria- I am so glad you are doing at least a little better, it will keep getting better and better. I have been doing very well lately, I have been taking magnesium supplements and that has helped me tremendously. Keep in touch.


Old 05-31-2006, 04:02 PM   #4
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Join Date: Nov 2005
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Lauren29 HB User
Re: Hello Friends - Update will get better I know you will! Thank you for the kind words and it seems that everything that you say you feel and go through...I feel pretty much the same emotions as you.......angry a lot at people who take their health for granted....but then thinking that we need to do the best that we can...w/ what we have...b/c we only have one life to live. I have been having ups and downs a lot latey.....some days I feel like I am on the road to recovery...and others I feel like I want to die if I have to live this way any longer..........but I always come out of it and things start looking up again. It's so hard b/c this illness is like a roller coster instead of getting better day after day in an incline. Everyone hang in there!
Today is okay for me............but that doesn't mean that there won't be some more dreadful posts from me later!

Old 05-31-2006, 05:42 PM   #5
Join Date: Feb 2005
Posts: 402
firechick HB User
Re: Hello Friends - Update

Hey Gloria and everyone else
I realize you probably won't see this one...but how's everyone else. I have been popping on and reading here but haven't noticed a few of you around for a while.
Sheri? How are you doing? Hope you are seeing lots of improvement!!!
CL, are you doing the VRT again and noticing positive changes?
Scotsman...are you Dr Scott now???? How have you been feeling?
Subs, I've seen you around and so glad to know you are there helping people who are new at this and dealing with the head monster!
I am good, been busy again as usual. As soon as I start feeling good I tend to overload on the projects etc...but am keeping a close eye on things. The biggest improvement is in mental state when a blip occurs, I tend not to get so anxious which only helps recovery.
Hope no news is good news!

Old 05-31-2006, 06:22 PM   #6
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unadventurous HB User
Re: Hello Friends - Update

Hi Gloria,
Glad to hear that you're doing better, I remember when you first came to the board... just think of how far you've come! I also took a long break from the board because I felt frustrated, and it did help. It's nice to have the support of everyone here, but you realize that you're not going to find all the answers on the board and time is what usually makes all this junk better.

I've been doing lots better, occasional blips here and there, but mostly due to hormones... I'm 18 weeks pregnant now so I chalk up all weird inner ear behavior to that. (helps me to stay on the positive!)

When you do check back in I hope you are feeling great - I'm looking forward to your full recovery post!

- cori

Old 05-31-2006, 08:38 PM   #7
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gloria2936 HB User
Re: Hello Friends - Update

Hi again,

Popping in one last time as I wanted to make sure I didn't make too many errors in my orginal post as I was in a hurry .

It was so nice to hear from all of you. Cori (Unadventerous), Congratulations. I wondered about you and Dizzy2 as I hadn't seen you two post in ages and secretly hoped you fully recovered. I am glad that you have improved alot and what wonderful news about your pregnancy. I thought for myself there was no way I'd ever have that opportunity after going through this and at times felt sad as I would have loved to have another child. You give me hope. I hope your pregnancy goes well and doesn't cause too much vestibular stuff for you. Good luck and keep me posted down the line.

Robin (Dizzyblond) - I don't do any specific VRT anymore as I just try to keep going and live life nomally. I try to just do everything I use to. I am limited as some things will bring on head pain/pressure but not really dizziness anymore. Mostly it is strenuous activity like heavy lifting or too much cardiovascular stuff. I did practice all last year an exercise similar to what Subs said he did. He posted once that he walked at night on an unlit road so that he didn't depend on his eyesight. I walked during the day on a track, but I closed my eyes as I walked. I do think it was a great form of VRT and helped with the dizziness. I do still take a small dose of klonopin. I've been on it since August of last year. It is a very small doseage. I'm not sure if it helped with my vestibular problems, but I think maybe it did help with anxiety. I go back to my neurotogist on June 20th. He is going to redo the rotary chair test and compair the results to the one I had done the end of July last year. It took me 2 months to decide to take the klonopin, and I'm glad I did. I'd do it in a heartbeat again as I do believe it helped me and I am not one to take meds as I believe I am like this today because of the allergic reaction I orginally had to an antibiotic. I am going to talk with my neurotogist about weening off it and see what happens. I want to do it very slowly as I don't want to go backwards. If my symptoms worsen, then I think at that point, I will consider MAV. I never believed I had migraine as I had no problems before the ear infection and have no family history of it. My headache and pressure was and is 24/7 and I have no typical migraine aura like migraineurs which makes me believe it is nerve damage. I also have seen a gradual upward improvement over the months versus migraineurs who go up and down more drastically (if that makes sense). I also wanted to mention that that new puppy I got back in the beginning of March has kept me going too and probably has helped me with VRT too.

I'm sorry to hear about your cancer scare and I am so happy that you are fine now. Try not to worry yourself about this as it will only make your vestibular recovery harder. When I had my MRI, it showed a very small cyst on my pineal gland which freaked me out for months even though I was told that it is quite common and alot of people have them. I never think about it now as there is nothing I can do about it. I'm learning to take things slower now. That doesn't mean I don't have any breakdowns anymore because I'd be lying. I am better today, not 100% but closer today than I was last year at this time. So if you feel better taking the vallum, then do it, but don't worry yourself about it as you won't benefit from it in the first place if you worry too much. Wait until you notice a steady pace of feeling better and then go from there. Vallum is a mild med so I wouldn't worry about it too much. I hope you continue to improve. I'm anxious to see where we both are 6 months from now as we started at the same time and had alot of similar symptoms. Take care of yourself.

JB - Glad you're doing good. Seems like we are progressing the same. I too take zinc and magnesium as I heard it was good for tinnitus so maybe that is helping my head pressure too. I still get it daily, but not nearly as bad as even just a few months ago. Keep me posted in a few months.

Lauren - I always think about Lizzy33 and her positive post when I am down (I am so greatful to her for writing that post). Having some better days really does show you are improving. I still get a bad day from time to time, but they are not as bad as they use to be and not everyday like it was for the first 13 - 14 months. That doesn't mean I feel 100% everyday because I haven't made it to that point yet, but I am lots better than last year at this time and it is clearer to me that one can fully recover from this. Subs is also proof that one can recover from this. Treefarmer who pops in from time to time also recovered 100% so it does happen. I'm even trying to stay positive that the tinnitus I have will vanish one day too even if odds are against it. You will improve. Someone wrote (I think it was Tummy) that nothing last forever. It was a great choice of words so when you are down, think of that. Don't let it beat you. I did for so many months and once you can get some control of it, it is easier to handle and it does get better.

Hi ya Firechick.....glad your plodding along. You've always inspired me with your strength. You go girl. You'll kick this like Subs too.

One last thing, I had to put my kitty down last week after suffering from diabetes for the past 16 months along with me and my illness. I had her for 16 years. I know I am better as I was able to cope better with the stress and the added stress did not make my symptoms worse.

Take care all and I'll talk to you soon.


P.S. - I forgot to say hello to Adrienne. I hope you are doing better too by now. How is your tinnitus? I'm still listening for you from the roof tops (lol). My doggie did suffer hearing loss after the inner ear infection she had a few months ago (her vet is the one who knew all about inner ear disorders). Anyway, she never encountered vertigo; however, my mother-in-law a few weeks ago rushed her old lab to the the animal hospital in the middle of the night because she has what is equivalent to doggie labyrinthitis. She is doing remarkedly well despite the rest of us who've suffered for over a year. Anyway, hope you are well.

Old 06-01-2006, 12:50 AM   #8
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studyin HB Userstudyin HB Userstudyin HB Userstudyin HB Userstudyin HB User
Re: Hello Friends - Update

Hi Gloria, Firechick and all other HB'ers,

Great to hear you have improved so much Gloria. I am the first to agree that sorting out mental health is of MAJOR importance with this junk otherwise the sufferer can just be stuck in a non-stop, unchanging loop of symptoms. The symptoms fuel the miserable feelings and the feelings fuel the symptoms.

Thanks for asking about me guys. I'm actually very well at the moment and back to my pre-New Zealand meltdown state. I'm around the 97% mark again with the odd little "thunderstorm" blowing through here and there, mostly kicked off by using my ipod occasionally. But that has improved markedly too. This time last year, 10 minutes on the ipod sent me to Mars for 2 days but now I need to be on the ipod for hours to cause disorientation which subsides within 12 hours. The worst problem remaining for me (and it is important for me that I get over this) is playing guitar. It really sends me flying very quickly and has a strong after-effect on my nervous system. At the moment I am in Prague on my travels with no guitar so will work on "guitar VRT" when I return to Sydney in September.

More good news is that I am back to 1/2 a tab of Cipramil. I am very strongly focused at succeeding this time in being completely free of the stuff but am taking it slowly. I have certainly learned about dangerous triggers (ie, coffee, cigarettes and new LCD screens) and will be very wary once I am without the med cushioning. Let's hope that I don't discover a new trigger once I am wide-open again!

Anyway, I will write again soon to report on the progress of the med reduction. As much as I hate being on an SSRI, it really did save my neck from the bottomless pit of labyrinthitis.

Not Dr Scott yet Firechick. I should know something in another month or two.

Best all....Scott

Old 06-01-2006, 06:01 AM   #9
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Howie2 HB User
Re: Hello Friends - Update

Hello Gloria and All:

Glad to hear your doing better. I know we have discussed this a million time off line but I feel that conquering mental is vital to getting better with this junk. We all have anxiety over this and one less thing for our brain to conquer helps.

Scott: Glad to hear your still doing well and are reducing the medication. You will continue just take it slow...

JB: Glad to hear your still doing well

Unadventurous: Congrats again on the baby as I already knew..My wife is due in 3 weeks so I will have my hands full

I am doing much better from latest relapse. I would say back up to 90% to 95% after my doctor increased my MAV medication back up. I dont think I will try to wean off the medication till after the summer. I will be busy eneough with the baby ... I have not been on as much , reading post here and there but with the wife almost due I am a busy

HBEP: How are you doing Still doing well. Just wanted to know.
CL: How is the new Job and New VRT doing I hope well

If I missed anyone I apologize and I hope you all are doing well


Old 06-01-2006, 07:09 AM   #10
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Join Date: May 2005
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joy78 HB User
Re: Hello Friends - Update

Hi Gloria and everyone else!
I'm hanging in there. I had a bad decomp due to stress but I'm better now. The stress was due to my ears starting to ring, well more of a static in my head then ringing. It started about 2 months ago, and has gotten better in that I have good days without ringing and days where it comes back. The doctors don't know why, and can only tell me it can go away, but aren't really sure. Which wasn't too comforting. It caused me to cry everyday and freak out. But now that I have good days and a break from it, I am hopeful that one day it will leave. I've heard that it can take six months, but can go away.

I printed out your post that you sent me about the tinnitus and that in your research you found that most people get rid of it. I read it all the time when I get sad and freaked out that it won't leave. I know I should be grateful that it isn't too loud, and the static is easier mentally to deal with for me than a ringing noise. Maybe that is weird, but it just is easier for me to ignore. The good days are wonderful and I love it, so I try to hang on to that, and hope one day it will leave. Thank you for your letter it saved my sanity and made me feel SO much better. I have so much respect for you and all you have been through. I'm so proud of you for hanging in there, and being strong. Let us all know how you are doing. I'm really sorry to hear about your kitty. How is your puppy doing?

I hope everyone is feeling better.
Take care,

Old 06-01-2006, 01:44 PM   #11
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Re: Hello Friends - Update

Good news Howie! Glad you're back on track too. Has the baby arrived?


Old 06-01-2006, 04:07 PM   #12
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Howie2 HB User
Re: Hello Friends - Update


No not yet Baby is due in 3 weeks

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