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Old 07-09-2007, 12:31 AM   #1
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Hbep, Kathy - long time no "speak" :)

Hi Hbep and kathy

How are you two doing? I thought I'd just check in after a long break. I have another little boy, Brett, born 13th march 07. He's a real little treasure and I'm enjoying being the mom of 2 boys (wow, it's exhausting though...).

On the health front I'm still plagued by the dizzies pretty much all the time, but again, the symptoms virtually disappeared during pregnancy and then flared up when Brett was 2 months old. They've subsided again as they do which is what keeps me going when it gets bad. I always know that a break is just around the corner.

Unfortunately I've been unlucky in that some other health issues have cropped up - in my head again. When 'head-ectomy's' are possible I'll be first in line!! After getting Bells palsy when Brett was three weeks old, I've also just been diagnosed with an Arteriovenous fistula. In short it's a faulty connection in the brain which results in your blood flowing from an artery into a vein at high pressure causing pulsatile tinnitus. It has not been pleasant. It started a few days before brett was born so nearly 4 months ago. I've had a cerebral angiogram so at least I have certainty as to what it is and I see my neurologist on Thurs to find out what the options are. There is a way of fixing them with a catheter but there are some risks but I don't know what they are yet.

Anyway, didn't check in to tell you my new health woes, but to find out how you guys are doing. Hopefully well on the dizzy front!

jen

 
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Old 07-10-2007, 12:10 PM   #2
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Re: Hbep, Kathy - long time no "speak" :)

Hi Jen,

Great to hear from you. And huge congrats on the arrival of Brett. I think last time we 'spoke' you had just found out you were expecting him. Really sorry about the other health issues. I hope the consult with the neuro goes well and that they sort that out for you quickly. It's frustrating when you get something else alongside the dizzy issues - which are more than enough to contend with. I presume the pulsatile tinnitus must be there all the time? I had it briefly when I first got ill - not sure why, then it went. On a positive note, if you do find you have to live with it, most people do habituate to tinnitus after a while. I have a constant low level ringing and it rarely bothers me. Generally the first few months and the shock of coming to terms with it is the worst.

I am up and down on the dizzy front. Still taking the drugs for the MAV, which does a good job of controlling things a lot of the time. I avoid lots of things -certain foods - lack of sleep etc... but the major trigger for me is a big stressful or anxiety inducing event. I had a relapse due to anxiety over a horrible and painful hospital test for a throat problem at the beg of the yr. The relapse lasted 7 irritating weeks and was pretty intense. It went again, but funnily enough I thought they were going to repeat the test again a few days ago, they didn't in the end, but I got in a bit of a lather and thankfully haven't relapsed fully but am definitely experiencing some dizzy rubbish on and off. So the lesson for me is to remain constantly zen like and calm - a very tall order lol.

Having said that I work freelance and was working flat out pretty much for 18 months, making up for all the time I took off ill. It's a fairly high pressure job and I was pleased that for the most part the work stress didn't trigger problems. I am now taking a bit of time off which is great.

It's a real bore having this but I guess the edge we have over when we first got it is knowing what's going on. It makes such a difference to just know what I'm dealing with, and, like you, touch wood, that if it flares up it will dissapear again. My symptoms are also very different from when I first got ill. I sometimes wonder if it will just go away one day. Apparently migraine can - that would be lovely.

It just occurred to me that you might be the best person to ask a question of. I am thinking of finally flying since the first time I got this. I know you also have tmj issues and are a migraineur like me and obviously you have flown with trips to SA etc.. Flying is the one thing that I simply haven't been able to make myself face. Have you had any problems with it? I am trying a very short test flight first so won't be dealing with jet lag - which I'm sure is a problem in itself. It's really just the actual ascent/descent - air pressure - being in the air thing that is worrying me at the mo. How have your experiences been?

Apologies if I have asked you about the flying before and have forgotten, it's something I kept considering and didn't do, but it looks like I am going to bite the bullet this time.

best,
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Last edited by hbep; 07-17-2007 at 12:55 AM.

 
Old 07-17-2007, 12:56 AM   #3
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Re: Hbep, Kathy - long time no "speak" :)

I am bumping this message up the board.
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Old 07-17-2007, 02:50 AM   #4
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Re: Hbep, Kathy - long time no "speak" :)

Hi Hbep

Sorry for the delay in replying. It's been a hectic week! No, you haven't asked me about flying before; not that I can remember anyway. I have had absolutely no issues with flying so hopefully that reassures you. I don't think air pressure has any effect on the MAV condition - well it appears not to in my case anyway! I did have some issues in SA last time we were there (18 months ago now) but the dizziness flared up more than a week after we got there and it was after a particularly stressful drive on Johannesburg's notorious freeways that I think sparked it off. I'm sure it was exacerbated by jetlag too which takes absolutely ages to adjust to when you're losing 9 hours between Aus and SA. I've done loads of domestic flights (you have to in a country this huge to get anywhere) and have had no issues whatsoever.

I saw the doc on Tuesday about my AVF. The short version is that the liklihood of it bleeding is very low but not zero. There are risks associated with the surgery so he has advised to only have it to treat the symptoms i.e the pulsatile tinnitus which yes, is there all the time. Strangely however, after the angiogram, it disappeard for 3 days. This was the first time I'd had silence in nearly 4 months. It has come back but is at a very bearable level. Previously the sounds were squealing, whaling, sirening, you name it - it was horrible. It is now just a whoosh whoosh which I'll learn to ignore assuming it doesn't flare up again. If the tinnitus hadn't subsided I would be having the surgery immediately. Isn't the timing of things funny? The doc couldn't explain why the tinnitus would suddenly subside. AVF's can spontaneously resolve themselves apparently so I'm holding thumbs that this is what has happened.

Now, here's something interesing... he mentioned at the beginning of the consultation that the AVF is very near the 8th cranial nerve (which explains the Bells Palsy I had when brett was 3 weeks old - another long story ) and near the nerves which enter the ear. When I heard this my ears *****ed up. I briefly described my 5 year history of dizziness to him and then asked him whether I could have had this AVF for 5 years with the pulsatile tinnitus only rearing it's ugly head now perhaps as a result of pregnancy. He said that this could be possible but there just isn't any way of knowing whether the two are linked. personally, I think it's a remote chance, just given the history of my dizzines, especially the fact that it virtually disappears in pregnancy. That is true MAV stuff. However, it was an interesting theory and I might investigate the idea further with an ENT and another neurologist.

Anyway, enough rambling from me. I hope you feel reassured re flying and glad to hear that you mostly have things under control. I don't think you and I can be considered "cured" dizzies but we have things under control...well mostly anyway.

Cheers
Jen

 
Old 07-18-2007, 03:39 PM   #5
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Re: Hbep, Kathy - long time no "speak" :)

Hi Jen,

Thanks for your reassurance re flying - it has bolstered my resolve to do it. I am getting tired of only ever taking hols in England. I'm desperate to travel.

Really glad to hear the the pulsatile tinnitus settled down. A pulsatile siren or whaling sounds grim. I'm not surprised you'd have considered the surgery if that carried on. You must have been really distressed. And the bells palsy can't have been fun either. My dad had that for a period - I saw how unpleasant it was for him. The pulsatile tinnitus I had for a bit was a mild whoosh whoosh sound. It hung around for a few months I think and I did get used to it before it went. I have my fingers crossed for you that the AVF has resolved itself. It certainly sounds like it might have.

Yes, very interesting re the AVF and dizziness potential connection. As you say, the fact it goes in pregnancy and that you responded so well to the drugs suggests not. But like you I'd certainly be interested in looking in to it.

I've been dizzy on and off for a few days now. It even threw a bit of spinning vertigo at me this morning. I already upped the dose of my drugs in Feb, although I can't tolerate drugs well so it's still a low dose. At some point I might try a multi pharmacy approach - add another drug to the mix. It would be really nice to have it permanently under control, at the moment I'm a bit of a sitting duck. It's hard with work never knowing it it's going to hit. I want to give the supplements I am taking a chance first, see if the addition of those helps. I have been really lax about taking them. I guess at first I was just so grateful the drugs kept it under control a good percentage of the time. I still am, but I would like to see if I could have a shot at controlling it completely.

It's always great to hear from you Jen. I don't write on here that often these days, but tend to pop in and look at the board relatively regularly as I work at a computer. Amazing that you have had two children in the time that we have been on this board! We really are old timers. I often wonder how the people I first met on here are getting on. Do you remember Ruth? Most people do pop in from time to time, Cathy popped in not so long ago, but I don't think Ruth has been around for an age. Hopefully she's put the dizziness behind her.

best,
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Old 07-18-2007, 09:05 PM   #6
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Re: Hbep, Kathy - long time no "speak" :)

Hi Hbep

Yes, I do remember Ruth. I think you and Ruth were the first people I spoke to on this board. I read through all my old posts some time back. It really is a reminder of everything I went through back then.

You're so close to such marvelous places for holidays I hope the flying is ok for you so that you can get going!

All the best

Jen

 
Old 07-19-2007, 06:55 PM   #7
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Re: Hbep, Kathy - long time no "speak" :)

Hi Jenn and Hbep.

It is so odd that I decided to check in to see if any of the veterans have posted. I too am amazed that you are on baby number 2 when we remember you being first pregnant. A big congrats to you and your husband. So sorry about the health issues. I posted quite a while ago that my second marriage came to an end but I will say that I am happier than ever now. I have moved back to my home town and have recently started seeing someone. My dizzy issues are almost non-existent but I always get residual signs around a stressful event or oddly enough a big atmosphere change. I don't let it bother me at all. I am working two jobs now. I rescued two dogs from shelters, live in the cutest little house and like I said am really happy. At 46, you know not to jump into things anymore and to take things as they come. I will say that I have found alot of enjoyment in red wine, and coronas with a squeeze of lime. I have been doing alot of hiking with my dogs and just yesterday had a black bear cross in front of me. I tell you...I am fearless now. Loved to hear from you and of course hbep.

Kathy

 
Old 07-20-2007, 05:19 PM   #8
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Re: Hbep, Kathy - long time no "speak" :)

Hi Kathy!

I'm glad to read your post. Wanted to let you know that you were the first person I connected with on this board and you helped so much. And that was about 4 years ago! My how far we've come. Sorry to hear about your marriage; even though you are happier now, those transitions are not easy. I'm glad to hear you're well. We have black bears here in Oregon. Are they in all states?

I'm basically 100% too and have been for quite a while. Hormones give me a foggy head every month, but there's no spinning! I love your comment about red wine and Corona! All the way through the vestibular hell a glass of wine (or two!) helped me to deal with the anxiety.

What kind of work are you doing?

Terri

 
Old 07-21-2007, 04:01 AM   #9
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Re: Hbep, Kathy - long time no "speak" :)

Terri,
I work for the State of Ny and fortunately were finally given permanent positions. Even though I worked full time, I was always classified as long term seasonal...go figure. So they finally put us in permanent status which is great. In the winter time, I work in the payroll/human resource department and in the summer, I get to work at a facility with a lake where I am in charge of about 10 employees. So it's nice to be out in the open air for the summer. I also went back to work at my old job where I was a chef for many years....the reason for that was because I needed a little extra income to pay my rent and propane bills. I can honestly say I have no idea how I ever got this inner ear thing and I hope I never do again. But I don't think about it every day. When I do have a little blip...like you have misjudged a step? I just let it blow off. I used to freak at just the slightest unusual feeling.
I am more active now than I was in previous years and hike everyday with my dogs. My little dog I rescued from Alabama is the one who infuriates me because she has terrier in her. She is the one who ran after the bear. My big dog knew that she was not going to mess with that huge black dog.
Anyway, isn't it nice that in some form we get to touch base with one another even if it takes a long time. We were all such a great support system for one another. You certainly can't say that about any Dr.s we saw.

Great to hear from you,
Kathy

I think everybody has black bears. I really don't know.

 
Old 03-25-2008, 06:47 AM   #10
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Re: Hbep, Kathy - long time no "speak" :)

Hi there hbep, Jen, Subs and any other old timers who remember me!

I cannot remember when I last checked in here on the dizzy board - it must be a couple of years ago?

In the last five years my 'relapses' of vertigo and associated symptoms have lessened, although it is still a monster that lurks on my shoulder. I can go a long time with no problems and then have a few episodes closer together. I often get the odd day where I feel rubbish but these are manageable and short-lived.

I still work part-time and am currently studying part-time distance learning for an MSc (associated with my current job). This will give me better job prospects and a chance of a reasonable salary, but I am still worried about how I might cope with a full-time job when the time comes. My hours allow me to pace myself, which I think stops me getting ill too often. Hey ho - we will have to see this time next year when I should have completed my degree!

I am off work today as I have had a rough Easter weekend with moderately bad vertigo which is just beginning to settle down, although I did not feel up to walking to the bus stop this morning and working in a busy office. This is the second day I've had off this year so I'm not doing too bad in that respect.

Jen and hbep - I'm so sorry to hear you were both still having problems (as of last July).

I cannot believe it was over 5 years ago we first communicated. I'm 31 now!!! Jen - congratulations on baby no 2! I often think of you and hbep and how much support you gave me.

I feel a little bad for not checking in here in so long - I honestly didn't think I would find you guys on here so recently.

Here's hoping you are both doing well now,

best wishes and hugs,

Ruth
xxx

 
Old 03-25-2008, 06:49 AM   #11
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Re: Hbep, Kathy - long time no "speak" :)

Hi scant - I remember you well too! Glad to hear you have been doing better

xxx

 
Old 03-25-2008, 07:17 AM   #12
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Re: Hbep, Kathy - long time no "speak" :)

Hi Ruth,

Good for you with the class you are taking. I hope it all works out well for you in your job.

I am quite curious how you are doing these days with your tinnitus? Hbep shared some information with me that she posted to you in regards to the tinnitus. Please tell me after 5 years, you are coping with it?

Best and hope you feel better from the weekend.

Gloria

 
Old 03-25-2008, 07:58 AM   #13
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Re: Hbep, Kathy - long time no "speak" :)

Thanks Gloria,

I hope the info hbep gave you helped. I was a total wreck when I first got the tinnitus - I thought I'd never be able to live with it. I still have it - it sometimes misbehaves, but even then it doesn't really affect me too much. I must say it did get a lot less severe after about 6 months. It is nowhere near as loud as it was.

I hope your tinnitus does not bother you too much?

Ruth
xxx

 
Old 03-25-2008, 09:17 AM   #14
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Re: Hbep, Kathy - long time no "speak" :)

Thanks Ruth. That gives me hope if you got use to it weather it be 6 months or years; it is hope. It has been 3 1/2 years and I hate it despite improvement with my other symptoms. I started TRT. I travel 10 hours round trip each month. I've been doing it since November 9, 2007. I was told it can take up to 2 years to benefit from the therapy so I suppose only time will tell or heal.

Thanks for the information and best to you.

Gloria

 
Old 03-25-2008, 11:46 AM   #15
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Re: Hbep, Kathy - long time no "speak" :)

Hi everyone,
How could I ever forget any of my head monster friends!!! So good to hear from you. I haven't been on here in ages also. Wow!! have we been through a lot. I have to say for myself that I am at a remarkable stage with this. About 1.5 months ago, I was having a couple of weeks where I was experiencing some pronounced symptoms and it doesn't matter how far you have come....it scares the heck out of you. I had to re think if there was something different that I was doing, and then it hit me. I still haven't been to the eye dr. to get reading glasses so I was using magnifiers for about 2 days while at work. I always remember Subs speaking of the visual being so important. So my next step is to get to the eye dr. and get the correct prescription. I believe I started on these boards back in Nov. of 02. Never forget this was my only saving grace. I still to this day can feel mild balance issues and that is if I focus on them. I am incredibly happy. Working my butt off. Living back in my home town. Adopted two dogs. And am now seeing a wonderful man. So, life is good. Would be nice to see if more of the veterans are going to pop in.

Subs!!! How are you? You have always been one of the leading rocks on this forum and I'm sure you are still to this day. Hope all is well.

all the best,
Kathy

 
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