My diagnosis (finally...sort of)

Had my follow-up with the Otolaryngology specialists earlier today. The general consensus is that I am having vestibular migraines without headaches. Not a 100% certain diagnosis, but somewhere in the 90% certain category.

Now the fun part really starts - trying to find the trigger(s). I may never find it, which means taking some type of medication from now on. I also get to try out different types of medications (if needed). For the time being, I'm sticking with my current medication. I've gotten the OK to up my dosage another 10mg if needed. I go back in 8 weeks or if my meds don't seem to be working (i.e. blocking or stopping the episodes). In that 8 week span, C and I will be making a trip, so they are very interested to see how I do on on the planes and immediately afterward. They are also interested to see how I do in the environment I'll be in (in keeping with my tradition of not disclosing info about trips I take until I return, the destination will remain a mystery until I get back to post about it).

The real bummer is that starting tomorrow, they want me to cut out (as much as possible):

• chocolate
• caffeine
• wine, especially red
  
• cheese
• MSG

On a positive note, they told me that the vast majority of people who have this rarely, if ever, have headaches. I've been trying to remember when I last had a headache and discounting an after several glasses of wine one back in September, I can't recall one. So I have that going for me....

F@$&!!

Get to go to 30mg @ day now :(

When the doctor and I discussed the meds that are normally prescribed for what they think is going on, I wondered if it was a coincidence that the 2 most common happened to be anti-depressant or anti-anxiety drugs - I think the answer is becoming much clearer...

LJ medical update

MRI was today. Nothing bad found. It was cool looking at the images with the doctor as she explained what they were looking for.

As for what is causing my problems, the new leader is something called Vestibular Migraine. There are many variations of this, the rarest seems to be the one I possibly have - the one without the headaches. There is an outside chance that this is all allergy related and that theory will be examined more closely if in the next couple of months my episodes do not stop.

As for treatment, it is a 2-pronged attack. First is medication that I start in small dosages and increase only if the episodes continue. The second avenue is food. While the causes of migraines are not completely understood, certain foods and food types are thought to be triggers. So I'm going through the process of eliminating certain foods, then re-introducing them one-by-one to see which (if any) seems to trigger something. I started this process back in early January and get to add something starting today. If after adding them all back and nothing happens, then the process starts over with a different type of food group (elimination, then adding one-by-one). I think there are 4 food group/types, so this could be a rather long, drawn out process.

One last note, that is a bit negative in my case - driving. While they didn't tell me to not drive, they did suggest I limit my driving, at least while I ramp up on the medication. Neighborhood and very local driving seems to be OK - anything more than that they wanted me to be cautious about. Bummer :(

Re: My lack of posting

As I posted about here, I've started my 2nd round of testing for my mystery condition. MRI is scheduled for tomorrow morning, with a follow-up with the ENT "team" after. Since my episode on the plane, I've had 2 more. One was last week when it appeared as if I woke up at my normal time having one. On the severity level, it was about a 4, but it was a very strange sensation waking up with a vertigo type thing going on. The other episode was Monday and it was a bad one. Not only did I have the nausea thing going on, but it was so bad I was actually over a sink...well you get the idea. That is the first time I've been that nauseated, so that was a bit freaky. This one lasted about 15-20 minutes and I was wiped out afterward.

All-in-all , not a good week. We'll see what the MRI results are tomorrow and go from there.

My lack of posting

While I can, and will, use being in Milwaukee over the holidays as my excuse, there is another reason. As I mentioned here back in October, I was dealing with some medical issues....well, they have reared their ugly head again. I've had 5 more episodes since mid December - 2 of them rather memorable. Since the onset back in July, I've been worried about what would happen if I were driving. Unfortunately, I got to experience that the night before C and I left for Milwaukee. I was able to make it to the shoulder safely, but as C and I switched positions, I had to hold on to the side of the vehicle to keep from stumbling into the closest lane of traffic.

The other memorable episode happened on Monday, sitting on the airplane about to take off. We had just pulled away from the gate when it started. I was very close to having to say something to a flight attendant about getting me back to the terminal or letting me get on the floor - something, anything. I made it through take-off and being able to move about the cabin so I could get to the lavatory. After about 20 minutes, all was well (relatively speaking).

I'm seeking 2nd medical opinions, in fact I started that process today. I'm going to a vestibular disorder specialist and will start a new round of testing. Had the hearing ones today - next up, another MRI.

My dreams of motorcycle ownership are slowly fading....

LJ's Diagnosis

So since none of my doctors can tell me what caused all my problems in late July and August, I've come up with what I think was going on. The internet can be a dangerous thing, giving those of us with no medical background the ability to type in some key words and come up with a diagnosis that a trained professional wouldn't. That being said, let me introduce you to Labyrinthitis - descriptions here and here.

The symptoms fit, the exams and tests fit, and at least it helps with my desire to give a cause to what was going on, other than " a fluke". The ER doctor was asking about sinus problems or allergies, which was a clue to me. He gave me steroids and antibiotics to clear up a sinus inflammation that was picked up on my MRI. I started those medications on a Friday, had an episode the next day and haven't had any since then. Another clue was reading about fluid getting in the inner ear. I was doing a lot of swimming during the summer and it's possible that fluid got into my inner ear. Both C (who has a semi-medical background) and an aunt who is a RN talked about reactions to some sort of infection early on, which also leads me to my view.


I did bring this up with the ENT yesterday and while she didn't totally discount it, she didn't really support my theory either. Her big problem with my diagnosis was she would expect more "wooziness" associated with my episodes, not "dizziness". But she didn't totally rule out a reaction to some type of ear or respiratory infection.

So....the book is closed on the medical events of my summer. Yea......

Not a great week - Update as of 10/12/09

Finally, after several back and forth phone calls, I heard from specialist #1 - the ENT doctor. I went in for several tests a couple of weeks ago, mainly to check out inner ear issues. Got hooked up with electrodes to my head and had to watch moving lights and dots. Had ear plugs inserted and listened to clicks and stuff. Then had the hot/cold air blown into ears, then had to count backwards and then forward in multiples of 3's, with eyes closed then open, waiting for the spinning sensations. This last test wasn't as bad as I thought it would be, though the cold air was more uncomfortable than the hot air. The results....

everything looked normal. All within the expected parameters. Whatever caused my symptoms was not inner ear related. The only interesting comment was that "during a couple of the tests, there were 1 or 2 instances that were outside the normal parameters that were more brain related than inner ear related, but nothing to be concerned about." The ENT doctor said that whatever was going on "was probably some flukey, one time only thing that will probably not occur again." And that since I've had everything checked out, I should feel good about that....

which I do, but there is still a part of me that wants to know what caused all this, so if there is something I can do (or stop doing) to ensure it never happens again, I can do (or not do) it.

I'm not inclined to pursue 2nd opinions right now, since I haven't had any further episodes since mid-August. However, both the ENT and the neurologist said that if I have another episode, I should get with the neurologist ASAP, which leads me to believe that while they don't know what the cause was, the leaning is towards a neurological one. Or, it just could be that it's better to er on the cautious side, since the neurological issues would be obviously more serious.

So I guess I'm back to where I started - not knowing. Several tests, many $$ later - at least I know (to a better degree) that all the heart, arteries, inner ear and brain parts of me are OK.

My trip to the ER

I wanted to post about this in more detail because I found the whole experience interesting. So when C and I pull up to the ER ( a Baylor system hospital, which are very good), there are only a couple of people sitting around. You hear stories about how crowded ER's are and while I do understand there is a big difference between an ER in suburbia and an ER in downtown, or even an ER at a county hospital, I was still shocked at the lack of people. It was around 7:45 when we arrived. There was a family sitting close to us that were there because the mother (50+) had gone to a Medi-Clinic or something like that after having an apparent heart attack. They told her they couldn't handle something like that, so she drove herself to the ER. She was there with hubby and a daughter. They didn't seem too concerned that she was just sitting there - and neither were the front desk. Within 10 to 15 minutes, some more folks showed up....a lady who was "dizzy and unsteady", with a HUGE baggie of all the medications (prescribed or not) that she was taking; an elderly guy who was there for a sleep study, but either couldn't read the forms or understand them and his wife had to tell him what to say or write; a middle aged lady complaining of stomach pains and "other issues"; and then a young boy in a scout uniform, who had a broken arm.

So based on what you told the check-in folks, the triage nurse would call you to her little side office. I was a bit surprised that everyone got called in to her before the young boy, who was in obvious pain and was crying. I would have thought they would take care of him, but as C explained, they knew what his problem was - with everyone else, they didn't really know what was going on and they need to figure that out in case it was serious. I felt really bad for the kid - the scout leader was trying to read stuff to him to get his mind off his arm, and his mother just kept going outside to make or take cell phone calls. We were in the waiting room for over an hour and within that time, she didn't say 3 sentences to him or spend more than 5 minutes at any one time with him. I wanted to tell them to take him before me, but C said they probably wouldn't, even if I told them to.

So after they take me back to a room, we sit there forever, waiting for a doctor. There were lots of nurses and orderlies, but he was the only doctor I saw around. When he told me they were going to do the MRI, I was a bit worried, only because he told us it would take a bit since the were having to call an operator in - that alarmed me, my thought being they must think they can't wait if they are bringing someone in to do it. I asked the doctor if they were doing this just for me and he said no, there was another patient that was needing one, so that made me feel a tab better.

As for the MRI, I guess I just don't understand why some people get all freaked out about being in the machine. I almost fell asleep in it (was in for about 1 hour). Then again, I don't have claustrophobia and therefore probably can't understand how enclosed spaces make those who have it feel. After waiting 30 or so minutes for them to go over the results and consult the ENT on call, they let us go. We got home a little after midnight. Never did hear what happened to the boy with the broken arm...I wanted to ask but I'm sure privacy issues would have prevented them telling me anything.

The story of my summer

Since I finished my final round of medical tests on Wed, I thought it’s probably the time to provide some details on what started this whole medical odyssey.

The last Saturday of July…a grocery store…afternoon…

C is in the meat/poultry section of the store and I’m in the wine section, just browsing and waiting for her. I’m looking around and suddenly, my vision is very, very blurry. I blink a few times, trying to clear it up when I get this weird feeling – just feel weird or strange. Nothing specific, just didn’t feel normal. After about 30 seconds or so, I get extremely hot and extremely nauseous. I started walking towards a back corner and my balance and equilibrium are all messed up. I have this feeling that I’m listing way to my right, so as I’m walking, I’m trying to lean to the left to compensate. I get about half way and can’t stay upright, so I stop and drop down to the floor in a sitting position. By this time C has gotten to the section and saw what was going on and is asking me if I’m alright. I’m totally aware of what is going on, I’m talking to her and asking her to find a bathroom and get me to it - I felt like I was going to throw up any second. I tried to stand up and couldn’t and went down, kinda lying on my side with the sensation of spinning – not the room, but inside my head. There is a men’s room around a corner, so C and a guy who was watching all this got me up and basically pulled me to it. The guy stayed with me while C went to find a manager and then get the car to take me home. The manager arrived with a wheelchair and got me out to our car. By this time, the spinning and balance issues had gone away, but the sweating and nausea were still there. C drove me home and after laying down for a bit, I felt fine. Total time of the event…about 90 minutes. By coincidence, I had an appointment with our family doctor on the following Monday. I told him about the event and the response was that he had no idea what might have caused it and he wasn’t concerned, but if it happened again, to get in to see him ASAP.

4 weeks go by and I don’t have any re occurrences. In the meantime, I take my road trip to the Great Plains (postponing it by a week or so to make sure I didn’t have another event). I’m back for a couple of weeks…..then:

Tues, Aug 25….at home….evening…

C is on a business trip and I’m upstairs on the computer, with a TV on. A news story comes on, I turn to watch it when my vision gets very blurry again. I knew what was getting ready to happen, so I stand up and while I got hot, not nearly as bad as the first time. I got nauseous, but not nearly as bad as the first time. My head was spinning, but not that badly. I was able to stay upright and after a couple of minutes, it’s all over. I didn’t tell C about it until she got home the following afternoon. Since this event seemed very minor, especially compared to the one in July, I wasn’t going to call our doctor. C convinced me otherwise and I went to see him on the following day, Thursday. He checks me out, asks me questions about slurred speech (no), arm pain or weakness (no), headaches before or after (no). He’s thinking stroke, but I don’t have the telltale symptoms. He suggests, for peace of mind, that I go see a neurologist. I make the appointment that afternoon, for the following week…

That night…at home…..night…

C and I are watching TV. Suddenly, I get a ringing in my ears, which starts at a low volume and pitch and steadily increases. No blurry vision, no hot feeling, no nausea, no spinning sensation. When the ringing stops, I can’t hear out of my right ear. I must have had a strange expression, because C asks me what is wrong. I can barely hear her and I’m a bit freaked out. And C is freaked out. So the decision is made to go to the ER. By the time we give the cat food and lock the doors and get medication list together, my hearing is coming back, but it sounds weird (tinny and like I was in a well). By the time we get to the ER, it’s almost normal and by the time the triage nurse sees me, it’s back to normal. ER doc asks me all the stroke questions and after talking with the ENT on call, the decision is made to get an MRI. So now my thoughts are tumors, specifically, a brain tumor of some kind. MRI takes an hour and the results are negative – no tumors, no masses, everything looks normal, except for some sinus inflammation. ER doc asks me if I’ve been having any sinus problems (no), but after talking with the ENT doc, decides to give me some antibiotics and steroids. Also, to follow up with the ENT. I make the appointment with the ENT for the following week, a couple of days before the neurologist. I also start taking the antibiotics/steroids. Then, 2 days later…

Saturday, Aug 29…at home….morning…

I’m doing my daily ritual of going to the 20 or so websites I check out when I blink and my vision gets very blurry. C is downstairs and I call to her to come up where I am. By the time she gets up the stairs, I’m on the ground. Very hot, very nauseous, big time spinning sensation. No arm pain, no slurred speech, no headache, very aware of what is going on. After about 10 minutes, it’s all over. By this time, I’m really concerned since this is the 3^rd event in a week. I’m also concerned about something happening while driving or swimming or walking in the neighborhood. My appointments are set for the following week, so I’m hoping they’ll figure out what the problem is.

So for the whole month of September, I’ve been going to doctors and having test after test done. At the same time, I’m freaked out about driving, so I limit myself on how much and how far. I was going to take a motorcycle riding class, but I’ve nixed that for the time being. I’m freaked out about getting headaches, so when I get one, I’m wondering what the cause might be (not eating, too much wine, or something else), C won’t let me swim without her being out there. I’m freaked out about walking in the neighborhood, on the off chance something happens blocks from the house. Basically, I’m a shut-in. Thankfully, I haven’t had another event since Aug 29^th, even though I think some of the docs were hoping I would. Here are some of the tests I’ve had:

EKG
EEG
Electronystagmography
MRI
MRA
Hearing tests
Caloric stimulation (inner ear with warm/cool air)
Stress test
Carotid arteries tests
Wearing a heart monitor for 48 hours


The bottom line is that all of these test have come back normal. So while we’re not really closer in figuring out what caused the events, it’s all about the process of elimination. Cardio and neuro have been ruled out, so that leaves inner ear issues. I just had those final tests completed and will have the results in a couple of days. I’m pretty sure they will come back negative/normal. So, while that still leaves the question open about what was/is going on, at least I’ve gotten a clean bill of health in regards to heart, arteries, brain, etc. I’ve done quite a bit of research these past couple of months and I have come up with I think was the culprit. I want to hear the results of the latest ENT tests and speak with the ENT doc – once I do that, then I’ll give my diagnosis.

Not a great week - Update as of 09/28/09

Finished up with specialist #2 this morning. This was the one that caused me (and for that matter C) the most concern - neurologist. With my initial visit to him earlier this month, he also wanted several tests done (and he is also the one who wanted me to see a cardiologist), then would follow up with me at a later date. This guy was all into the "S" word (stroke) - so I had many many questions about headaches, arm pain, arm weakness, slurred speech, not aware of surroundings, etc. All my answers to these questions were no, which of course is good, but not helpful in trying to determine a diagnosis. So after the tests, C and I went this morning to hear the results....

no problems, no issues, healthy, cannot explain what the problem is...or was. One of the leading candidates when I first went to see him was a transient ischemic attack, or TIA. While I didn't have all the tests mentioned in the linked article, I had many of them and all came back negative.

So, I've now gotten an "all-clear" on the neurological front. This leaves me with one specialist to go, which if this turns out to be the culprit, isn't as critical or alarming as this last 2 possibly were.

In all the research I've been doing over the past month or so, I've come up with my own diagnosis . I have my last 2 tests on Wednesday - when (or if) they also come up negative, then I'll share what I think I have (or had) and the events that occurred in late July and August that got this whole thing started.

Not a great week - New Update as of 09/22/09

Finished up with one of my specialists this morning. One of possible candidates for the root of my problems was something heart related. So I was referred to a cardiologist. I've had several tests done in the past couple of weeks, one of which was to wear a heart monitor for 48 hours. My follow-up with him was today and to "close the book" on this avenue, he suggested a treadmill stress test.

Bottom line: whatever is causing my symptoms is NOT heart related as far as he can tell. I could lose some weight (like I didn't already know that) and while my resting heart-rate is a bit high, it's not high enough to warrant any concern. I've always thought my resting/normal heart-rate was on the high side, especially compared to my dad's, which is very low. He admitted that they wanted something to occur while I was wearing the monitor (this wasn't a surprise) and only noticed "a few extra beats every now-and-then", but nothing out of the ordinary or a concern.

So, while I still don't know what exactly is going on, it appears that I've received a clean bill of health on the cardio front. My last test with specialist #2 is later today - I'm hoping his news is good as well.

Not a great week - new update

I was remiss in not mentioning doctor appointment #2 that occurred last week. My personal opinion is that this doctor's specialty is closer to finding the problem than the other specialist I saw last week. Doctor #2 wants me to have 4 tests done before seeing him again - 2 of them are today (and I get to add a new specialist to the mix - doctor #3). The picture, I think, will become clearer by this evening (at least I hope so).

That being said, I'm in a weird mental place these last few days. It's frustrating not knowing what is going on with me, but it's a bit scary because I think it's going to be something more related to doctor #2, which is a much more serious proposition. And, if it turns out that it isn't related to doctor #2 and the tests he wants me to have, while I'll be happy that that whole range of stuff will be probably be ruled out, it doesn't get me any closer (in my mind) to figuring out what is going on.

I just have to keep telling myself that it's a process of elimination - figuring out what it ISN'T gets everyone closer to figuring out what it IS.

And for those of you keeping score at home:

doctor #1 - specialist that if it falls here isn't that serious of a deal.
doctor #2 - specialist that if it falls here is a more serious deal.
doctor #3 - specialist that if it falls here is a more serious deal.

It's not been a great week - update

Had doctor appointment #1 this morning. A typical "good news/bad news" scenario in which the good news is that this doctor says that they DO know what I DON'T have - the bad news is that they DON'T know what I DO have. I'm not presenting the typical and/or normal symptoms to fit me into the 2 or 3 usual suspected conditions. So....I go back to see this doctor in a month for additional tests.

In the meantime, they suggested that I keep doctor appointment #2 on Thursday, if just to rule out other possibilities and for my peace of mind.

It still sucks getting old....

It's not been a great week and an event put on hold

As I talked about in late June, I had a big July planned. A trip to Telluride, CO over July 4th; getting my concealed handgun license and taking a motorcycle riding course. 2 of the 3 were accomplished - well, while I've passed the CHL test, I haven't received it. Supposedly because of the deluge of applications, the state of Texas is running behind in issuing them. The one that hasn't happened yet is the motorcycle course. Between days of rain and 100+ temps, I put it off until I could try to get days with no rain, not a lot of wind and below 95 temps.

However, the wait has been extended indefinitely due to some medical issues. I'm not so much of an ego-manic to believe that anyone other than a very few even care what it is, but I thought I had to mention a bit more of an explanation about why I haven't taken the course yet (in case anyone recalled that I had mentioned that I was going to do it).

I don't want to go into much detail for a couple of reasons - (1) not exactly sure what is causing the problem right now and (2) want some degree of privacy. That being said, I'm torn about talking about what is going on once the cause has been determined. I will say that the symptoms are such that I do not feel safe being on a motorcycle unless and until it's all figured out and straightened out.

I first became aware of a potential problem with taking the course in late July and was in the process of trying to work the course in during Sept between Arkansas football game trips when that had to be rethought due to the events of the past week. I can't recall too many weeks in my life (that being said, my memory isn't the greatest to begin with) that were as bad as last Tuesday thru Saturday (not counting a week long stay in the hospital with an appendix problem in the late 80's). Hopefully, by the end of this week, I'll know more about what is going on (since I have a couple of doctor's appointments) and I'll post, in more detail, about the events of last week and what happened back in late July.

As I've said to C repeatedly during the last week, it sucks getting old.