Health Stuff… If you’ve ever gone through it you probably dread the conversations you get. So many people mean well and try to help. You get all sorts of diet, treatment suggestions, news and magazine clippings…. it does get tiresome.

I have added to my diagnosis in the last few months. I’ve been diagnosed for the last two years with Meniere’s Disease, but in the last several months have received a diagnose of “likely” seronegative rheumatoid arthritis. I had been having joint pain all over since October (which was a rough month for flu bugs at our house.) I can’t help but think that may have triggered all the problems. Right now they’re trying to regulate medicines, but I’m on the prednasone, plaquenil, a couple of allergy medicines (as that is a trigger for the Meniere’s…. (sigh) and a myriad of more conversations I can have where I get recommended foods that are antiinflammatory. I know – they are trying to help, but good grief… sometimes you just need to try one thing at a time and see what happens. (Unfortunately many of the treatments take a while to take effect, or have side effects that are scary.)

May/June was a very active spinning stretch. I had about 5 episodes through a stretch of a few weeks. It seemed like a spin every 3 days. I think the start of it was a missing of the allergy shot due to a fever and then several necessary visits into the attic to identify a leak location. So, I’ve had it all lately vertigo (although it was “mild” vertigo – I didn’t have the MAD spinning that I have experienced before…)

I can’t help but wonder if the two diseases are related for me. Both of them seem to have inflammation as a symptom and autoimmune related causes. I guess my immune system is just working too well…

Here’s a weird note. For some 20 years I’ve avoided milk like a vampire avoids the sun because of several experiences of terrible stomach upset after milk. For the last 15 years I really had wished I could drink milk and resolved to try it again when I had a free afternoon (because I new I’d feel like I had a stomach full of knives afterwards.) Well. Sunday evening I took a chance and poured a skim milk, added chocolate (great cold drink for a late spring (Hot) evening btw..) No bad effects. So, every night this week I’ve done likewise and have been on a roll energy wise (I’m thinking that may play a part in my energy of late as I’ve been on this low dose prednisone for quite a while so I doubt it’s that.) If anything my stomach/digestion seems to be perking along better than it has been over the last several months.

So…. that’s weird. I’m assuming that before maybe it was the fat (I seem to recall that it was something like 2% skim and I think what we have is …. well best described as 0% skim.) Who knows, maybe my stomache chemistry has changed?

What a fun winter it’s been! (Slight sarcasm.) I enjoy snow and we’ve had it in spades this year in a way we haven’t seen for many years. I haven’t really been able to enjoy it much though for the joint aches and pains which seem to be worse in the cold. After my last post I had another vertigo attack on January 6th. How do I remember the date? It’s funny – I usually have a hard time remembering what I had for lunch yesterday but I can recall the dates of my attacks for quite some time. I remember it was a Wednesday and I had to cancel the afternoon portion of my schedule to get to the house and crash. Thursday was a wash as well. I started a round of prednasone that day as well. My joint aches seemed better over that following weekend. Which unfortunately has made me suspect that this may be Rheumatoid Arthritis coming on.

I finally had an appointment with the Rhuematologist almost two weeks ago now and had another round of blood drawn for yet more tests. (7 this time… I think that’s a new personal record.) They prescribed meloxicam as an anti inflammatory and I was told not to take ibuprofin while I was on it. I was also told it would take about a month for me to tell if it was working or not.

Since then, I got another allergy shot and now am feeling a bit low the tail end of this week (as usually happens after the allergy shots…) I just get so tired in the days following the shots…. it’s hard to describe, but everything seems to be fatiguing. Well, my joint aches are worse right now too. I don’t know if it’s the weather change or the shots. I’m beginning to think that the shots may correlate with more aches and pains.

I had a call from the Doctors office and called back today and while they didn’t detail the results from the blood tests they said that it was a potential connective tissue disease and they would talk about it more at my next appointment (which is in March.) So, I looked just to confirm what was a “connective tissue disease” and sure enough…. Lupus, Rheumatoid Arthritis, Sjogrens Syndrome and a couple others are in the same family of ailments.

At my appointment he had speculated a few possibilities. 1) Since it coincided with having H1N1 it could be lingering joint inflammation from that infection – it’s not unheard of for such things to last a year after the event. 2) the beginnings of Rheumatoid Arthritis or 3) Siliac Disease – which as I understand it is a severe form of Gluten Allergy. But, from the testing now it’s sounding as though we’ve found the beast behind door #2.

Yes, I’m down today. Of course, I was also down the day my first round of testing came back and everything was normal. I started questioning my sanity and if all of this pain wasn’t just my mind making it up for me. I can’t win – it sounds as though it was what I expected and I’m down. They also said the tests are not conclusive, but for that matter it could just be due to being in an early stage of things.

RIght now I’m REALLY hoping that in the next couple weeks I’ll notice an improvement with this medicine. So far it doesn’t seem to be an improvement, but even the drug information said 2-3 weeks (although we’re closing in on 2 weeks.) I guess what I’m really scared of is if it is related to the shots. I really don’t want to go back to where I was before I started the shots. With the near constant ear pressure and roaring, dizziness for weeks on end. While they certainly haven’t cured me as the January spin proved, I seem to have found an equilibrium of sorts. (I had been delayed getting a shot due to snow before the cycle that led to the last vertigo.) I seem to be better off if I go exactly every two weeks.

But then, if that’s encouraging and leading to the joint pain? Hurt all the time or give up your hearing and balance in one ear. There’s a good menu of options. It’s like the do you want it to hurt now or later commercial…… except more along the lines of do you want to ache now or be nauseous and deaf now? I’m not sure which to choose, but I’d probably have to choose deaf and nauseous. If anything else maybe that illustrates how bad these aches have been. Sometimes I want to make a request for a reward for the whereabouts of the person with a voodoo doll and pin.

I know there are a lot of people worse off and I suppose there’s a lesson in all of this, perhaps to slow down and not pour so much time into work. I wonder if the stress from that is what has brought all of this on. In spite of that, I just need a day to be down about things I suppose and think through them…. and get ready for what comes next.

I don’t know how else to put it, but the benedryl fog. The last month or 2 benedryl has helped to keep me from experiencing the worse stuffiness/tinnitus/spinning, but it’s making me feel like a zombie. I take a full dosage in the evening around bed time, but several days I have also had to take a half dose during the day. I’ve been taking one in the morning and if necessary (more crackling/stuffiness) then one in the late afternoon. That along with astelin and I feel like I’m just a fraction of myself. I don’t have energy or spark to get out and do anything. I spin my wheels at the work that I start, I feel like I’m thinking in oatmeal or molasses. So, today the question was what else can I try to keep the stuffy head stuffy ear/ear pressure away while I’m continuing with the allergy shots.

So, I have a few fresh prescriptions to try. One for allegra which I had tried some years back, although since the shots it seems that the allergy medicines have a better chance of doing something. Also, I have a sample and prescription for veramyst which is a new one for me. I really hope that between these I’ll be able to taper off the benedryl and not get back to where I was late May/early June. This seems to be an unbearable equilibrium I’m at these days. Either take medicine and be doped up or don’t take the medicine and spin, have vertigo, lose hearing. Gee…. isn’t there a third choice?

Anyway, we also talked about the possibility of adding aspergillus (sp?) to the shot routine which is a possibility if these other items don’t make a difference in the coming week/weeks.

It’s kind of funny, he noted that I had a bit of congestion as he checked out my nose, (I had taken a full benedryl last night at bedtime and a half dose this morning along with astelin at bedtime and this morning.) I told him that really this was pretty good as far as things went and was worlds better than 2 or 3 years ago.

This site is really coming in handy for me though as it gives me a good way to go back and review my case history before I go to the doctor. Everything is running together for me over the last few years. I have a hard time remembering when it was I started with which treatment or when I last had a more serious attack, etc. The paper journal that I was keeping I haven’t kept up with in some time so most of my events get recorded up here.

Well, time to press on and attempt to get some work in this afternoon. It’s really hard though the benedryl took my get up and went!

On the plus side I have had some promising news in other areas today so, maybe I can use that to psyche myself up to get some things done!

We had taken a short weekend trip when I had to cash in that Prednisone prescription. One night stay in a hotel just as a mid February get-away. We had to cut on the air conditioner that night and the next morning as I was loading the car things started spinning. Not full blown vertigo (spinning vortex of death as I’ve started to think of it), but on my own classification scale it was heavy dizziness. I took a Xanax and we made it back into town. I got the prednisone prescription filled and took it to the letter.

I really felt pretty well that week. I think that’s the quickest bounce back from a spell that I’ve had.

In talking with my allergist he agreed that the mold I’m allergic to (aspergyllum) likes Air Conditioners and that seems like it may likely have been the trigger. I’ve moved to every other week allergy shots (and he’s encouraging me to space them out further if possible.)

I still find that I’m off balance many days, but not as bad as before and as I write this I haven’t had another dizzy spell. I’ve also had very few pressure/tinnitus days since that mid February 2008 attack. I’m writing this in October of 2008 (even though it should post May 15th) and I will provide updates as I can.

I am writing this site as a documentary of what I’ve experienced and also in an attempt to gather good information on Menieres. I may not post here regularly. It all depends. I’m hopeful that in 5 years time I may have all but forgotten that I was once diagnosed with Menieres Disease.

I know I will never forget the vertigo spells that led up to that diagnosis though. They STILL haunt my dreams.

So, by the time I was at my ENT appointment I was still having the pressure and roaring in my ear (always the right ear.) I was still off balance and dizzy. Especially after car rides. It was hard to watch motion. (Sitting in a lobby facing the street was almost torturous.) I went through several tests at the ENT including a hearing test and was Diagnosed with Meniere’s Disease. He said that the hearing loss matched the classic “loss curve” for Meniere’s and he prescribed my with Alprazolam (Xanax) and also wrote a prescription for a diuretic that I would use daily.

He also prescribed a reduction in salt intake. This seemed to run counter to my thinking that my allergies were the main cause. During this time I had started logging EVERYTHING. Weather, eating, drinking, salt in each food, portions, medicines, EVERYTHING I could think to write I put in my log. There seemed to be NO correlation between salt intake and my symptoms. I was still feeling pretty lousy.

Around New Years I started slipping back to less frequent allergy shots and in mid January I went to a weekly routine. During this time my symptoms started getting better. I started noticing that about 24 hours after my shot on Monday I’d start feeling pressure in my ear and if that continued by Thursday I might be a bit dizzy, but it cleared up a bit after (in time for my next shot.)

At the NEXT ENT appointment I described this correlation and he seemed to agree that we might have a finger on the pulse of the problem with my allergies. So, he prescribed Prednasone in case I needed it for a BAD allergic reaction.

I then went to the allergist as I had been referred and discovered that I was allergic to dust mites and a mold (aspergyllum…) They started treating me for the more severe reaction, dust mites and couldn’t really say that would solve my dizziness/vertigo, but diagnosed me with Eustachian tube dysfunction as a likely cause for all that. My shots began and I found out in the early phase of “once per week” shots I could come in as often as I like as long as I left one day between shots.

I was eager to get things going (and to get as much as I could on the 2007 year health insurance as we had already met our $5200 deductible.)

So from October through late December I got allergy shots 2 to 3 times each week. I managed to get in Monday Wednesday Friday shots many weeks. Through all this time I was feeling miserable. Fatigue, roaring/pressurized ear/constant mild dizziness and off-balance.

So, I called the doctors office again and asked for a referral to an Ear Nose and Throat doctor. I just wanted to have another opinion on getting my balance back. (The worst was a car ride Thanksgiving weekend. I felt like was still riding in the car a week after I got back.)

So I got a referral to an ENT (Ear Nose and Throat Doctor.)

After my second vertigo attack I knew I had to find out what was going on. I was now terrified of that coming back. It haunted my dreams. I bought a pill carrier for my keychain and put the Meclizine in there. I read for hours online and found a description of this disorder called Meniere’s Disease. It said that the main symptoms were pressure or fullness in one or both ears, loss of hearing in one or both ears, tinnitus or roaring in one or both ears, dizziness and occasional bouts of severe vertigo. My jaw was on the floor as I read peoples descriptions of their experiences in the forum at the menieres.org forum. I found people there describing what I had experienced and had not yet found a WAY to describe.

I called and scheduled a regular physical at my General Practitioners.

I described what I’d been experiencing. At that point the roaring in my ears had gotten to be quite severe at times. (I recall one night it was as though I could hear someone playing jazz guitar in amidst that sound. I guess my brain was bored.) I was given a longer prescription for the meclizine and another allergy medicine to try as well as a referral to an allergist.

Time to visit an allergist and try to get my allergies under control