Well hello girl, how you doing? Just saw your post--am sorry you had some fall back. I know it won't last long and you'll be great again! How's everyone? Hows the kids? I see you still have your dog--hows that going? As much as I HATE to say it-I amabout the same.Same ole boat. The xanax did help a lot but the docs don't want to give it--its addicting. I really don't care--if it helps me--thats what counts. What gets me is the dose that helps me is so very small. That for the life of me I can't see their reason for not helping me. I tried the SSRI's but I can't take them. I ended up in the emergency room for what he called an adverse event! So what did the doc do--gave another SSRI to try and same thing happened. I did get the MRI, with and without contrast done--and it was fine. So I now know I DO have a brain!!! You know I was beginning to wonder if the blasted thing has just gotten tired of all this and left!
ANYWAYS--whats been happening with you. Love and Prayers, Belle

Hope you dont mind me chiming in Belle - but wanted to say a big hello - long time no hear! Sorry to hear you are still in the rough boat - me too - must talk soon. Ili is around on here a tad but not much - I told her about scott's videos hence why she popped on the other day! Will tell her youve posted.

xxx :D

Hey Belle,

Sorry to hear you're still in that dam boat...and strange they won't give you a low dose benzo. Hain seems to think that it's ok on an ultra low dose!

"Lorazepam is a particularly useful agent because of its effectiveness and simple kinetics. Addiction, the biggest problem, can usually be avoided by keeping the dose to 0.5 mg BID or less."

Can I ask which SSRI meds you tried? What a hassle they caused you so much trouble.

Best to you....Scott

Hi CL and Scott, Love to talk you anytime guys. Thanks for telling Ilia. What has LL decided is exactly wrong CL? Well, first they decided on Lexapro - 10mg. The second dose sentme to the ER. Felt like I was going to faint and then like big ole fireballs were pounding my chest on the inside. I have been on 100mg of Toprol XL for the past 6 yrs, first for rapid heartbeat and the past yr for high blood pressure--which I do believe is fromthe high anxiety from this monster.When I got to the ER, my BP was 150/95 and pulse was 98. Next she went for Zoloft--the pharmast was totally against this cuz of the reaction fromLexapro--he said--I had some kind of basic reaction and that I shouldn't be on SSRI's--he felt so strong about it that he called the doc. Doc stood by her decision. Well,low and behold--first zoloft did the samething except worse. Then she goes for cimbalta--caused my heart to go nuts--which terrifed me. Her next idea was effexor--told her NO WAY-I already read about effexor raising BP--From what I have read Toprol and SSRI's are not supposed to go together.The dose of xanax that greatly helps me is lower than that Scott--0.25 twice a day does me fine.I half the 0.5 and thats all I take. I told her I am going to need anti anxiety meds just to get over the meds she has insisted on me taking!! Scott, where did you get that info from about Lorazepam--maybe if I print that off and take it to them--I had read about Hain using klonopin, another benzo--if this crap had stuck around 2 yrs--I'm into year 3. But I can't find the site. I was seeing another doc--we did the valium--it helped some but not much. So he went to xanax--which like I said helps greatly. Much to my dismay,he left and theres not docs left that care what helps you. Any help you know is much appreciated. Love and prayers, Belle

Belle

Same as ever - uncompensated Labyrinthitis - doing vrt...and hoping! Will catch up with you soon for def. xxxxx

Hi Belle,

Just wanted to chime in here. I have been suffering for just a little over a year with this but agree that I didn't notice any changes until I started on the klonepin. I take a very small amount and it has helped me so much with the dizziness and vision problems. I noticed the improvements after my N.O. upped my meds slightly at the end of October and by December, I saw great improvements in that area.

As for the zoloft. I tried it too and my heart was beating out of my chest. I felt very anxious and my thyroid gland swelled up. I took it about a week and stopped it. After another week all those symptoms stopped.

I just thought I'd add my experience as it confirms what you are saying in your post.

Gloria

Hi Gloria, thanks for telling me.I was beginning to think it was just me,cuz I know a lot of people the SSRI's have helped. They don't have this dizzy monster but they were helped with a SSRI. May I ask you how much do you take? I want to be fully prepared before I go back to the doc. I just read on Hains site that he DOES recommend kolonpin over xanax. I haven't gotten to try the kolonpin yet but I am MORE than willing. Now to convince the dern docs.. I have tried to explain LOOK this has been 3years now (will be in April)--I NEED some help. I am 51, so the ole hormones are going totally nuts and add the monster to it and I am ready to scream at these idiots. I did walk out on her, the doc, at my last appointment so next time I will have a new one. Thought, oh no--here we go again. It takes a whole lot to make me mad but she was SO stupid and uncaring that I had just had it.
Enough of my ramblings!! love and prayers, Belle

Hi Belle,

Sounds like you found the info on Hain's site so I won't bother sticking in the link. Wow, the SSRIs really knocked you about! And you tried both Lex and Zoloft. I guess for some they just don't sit right obviously. But good on you for being brave/gutsy and trying something like that. I couldn't handle Zoloft either - it gave me all the same feelings you describe, however - and who knows why - Cipramil has been a breeze apart from some weight gain and feeling zoned out at higher doses. Hoping you find a doc who will help out. Let me know if you didn't find the correct link on Hain's site.

Best...Scott

Hi Belle,

I was going to mention that Scott mentioned he had a problem too with zoloft. I was prescribed prozac afterwards but never got it filled as I am terrified to try another even though Scott did well with the second SSRI.

As for Klonepin, in August I was started on .25mg (half tablet) at night for one week an then increased to .25mg in the morning and then again at night. I noticed within three weeks some slight improvement.

When I went back at the end of October and a few other test (for meniere's and another ct-scan for the bone thinning around the inner ear) turned out to be both normal, I talked with my neurotogist. He thought I was showing slight improvement on the klonepin and upped the doseage just a little to one tablet (50mg) at night and a half tablet (25mg) in the morning. Again, within three weeks is when I noticed bigger changes. My dizziness was subsiding and I started noticing when I'd go into stores that my vision was getting better. I'm no where cured as I still have some lingering vision problems and occasion off feeling and I still suffer from headaches, pressure and funky ears and tinnitus, but am hoping with time and patience of a saint, it will all go and I will one day be the Gloria as my family and friends once knew.

Hope my info helps. Take care of yourself - Gloria

P.S. - I did want to mention that my doctor told me that it is still a low doseage that it shouldn't cause me to become dependent on it.

Hey belle!!!!!! Sorry that I didn't reply to your post but as CL said I sort of dip in and out a bit and quite often dont post as their are so many new folks I don't know! But by chance I was having a quick browse and noticed your post.

Sorry that you are still in the darn boat, very annoying but I am glad that all the tests are clear (new they would be!). This whole thing just seems to take a age to get better.

I am okay, just not prefect. I think mine is a bit worse because I had a it on BPPV on the left side again. I saw the proff again yesturday and she did an elpy just to see if that helps, so we will see. She was very encouraging really and said look what you wher like 2 years ago so think what you'll be like in another 2. Lol, so like not long to wait then!

I then went to a VRT session, not at the National Hospital but a ENT clinc (deep breath, did not see an ENT) and she was amazing. Basically said that my residual symptoms where classic vestibular dysfunction. She tested my balance and said it was average for some one with V Dysfunction. So I got a balance cushion and a bunch of horrendous (dizzy inducing majorly) exervises. She was explaining that because I am at a very functional level my symptoms will only really be brought on at fast head speeds - glancing quickly etc. She was correct. She went onto say that basically you can not really ever stop being dizzy in these instances unless you expose your brain to enough fast paced exercises to get it to compensate. Makes sense to me, as I have fully compensated fro slower speed stuff whcih I do all day. She also went onto say that over 90% of people she teats see signifigent improvements, I think 30% see complete resolution and that only a very small amount are unreposive to VRT. She said that you know if its going to work as within a 4 - 6 weeks period you will see 'some' improvement in your symptoms daily. You know thats just what happened to me once I got outa my bed over 2 years ago when I had will.

Okay enough of that chat.

My kids are all well and yes we have the little dog and she is a cutie pie. But a real royal pain too! barky and demanding. Will is a full on toddler, chatting away and generally demanding attention 24/7. We did start our own business, all well on that front. But there in lies another reason my dizzies are not so great. That I am knackered and working long hours. I have also developed a re-current headache which Proff said is migraine and as you know that interferes with compensation. She has prescribed me a tiny dose of beta blockers which i am told will stop the headaches starting. I will give that a go, nothing to loose and I want to get back to 100%. But a tad wondering if there are side effects so will find out.

Okay off for my dinner!!

Let me know what you are up too!!
Ilia xxxxxxxxx & hugs :wave:

Ps Forgot to say that the VRT lady also told me that there is a website that you can be guided through a home - epley - not the BRANDOLF thing - but a modified version that is seemingly better and quicker. I dont know it yet and would need MOD approval but if its any good will ask.

Thanks
Ilia

Hey, so very glad to hear from you. Have missed you greatly! Computer had been down. He had to erase everything on it. No wonder your getting headaches, your platter is too full ! Dang, running your own biz is hard enough when all is well, can't imagine even trying with this ear crap. I do admire you! Add the kids AND the dog--mercy sakes.. If the exercises help--please share. Hope the med puts a stop to the headaches. I know you will be 100% in no time.
Crissy will graduate in May and we are full force doing all the stuff she has to do to get into college. As you can see, I am just fighting docs that don't know a thing about this mess.April is 3 years and I have done everything I know to do--so, am at my wits end here. CL said Lorr is better. Am so glad for her.
Kiss and hug everyone for us. I know Mr. Will is a mess.Bet he's into everything! You take care and lets yak whenever you have a minute. Love and prayers, Belle xxxx

Hi Belle - cant remember saying Lorr is better but maybe its my brainfog! Hehe - she still has 24/7 dizziness and is under the london hospital - I think shes had some improvement but still suffers. I feel for you petal as Im too at 3 yr mark and know how demoralising the whole thing is.

Tlk sn u xxxx

Hi CL, so sorry if you didn't say Lorr was better--I really thought you did--maybe it was wishful thinking. Well pooh, I was so glad she was better.
Yep, am totally fed up with this. You guys are seeing LL, who's one of the best--so maybe just maybe she will come up with something. As you know, over here,its all based on $$$$ which I don't have. SO, we can keep on praying and trying our best. Just sometimes,it all gets too much and there I'll be bawling AGAIN... Thanks CL. Love and prayers, Belle

I know it must be hard there with the money situ. LL is good and I have asked to see her personally in April as you dont generally on the NHS. Ilia's recent private physio seems excellent and has a different approach to the rest so there are option - I keep telling myself.

I too have bawling days lol - I think we are entitled to it to be honest. Sometimes I just find it hard to keep pretending to the world I am ok when inside all I want is my old life back. Must talk soon. You are in my thoughts Belle xxxx

Hi CL, Thanks,your in my prayers too. I keep trying to figure out-WHAT have I missed--what haven't I done. I just want it to quit. Yep, I know what you mean, outside we look just fine and we have to smile and just keep going but the inside is screaming--I just want to be still!!!! I want the floor to quit moving when I walk too! I want my clear vision back. The worse the motion--the blurrier the vision. Dern docs say--but, your not moving. NO--outside I know I';m not--its on the inside!!! MERCY--one day CL, one day!!! Love and prayers, Belle xxxxx

One day indeed and when it arrives, you and I shall be having the biggest party out there! I think we deserve it. :jester:

I also have the floor movement, internal motion etc etc - sucks!

Lets chat sn xxx