Getting Better All The Time - Hope Always Exists

I came down with this ailment in early 2005. Took my first cold weather mini-vacation/out of town excursion this past weekend for the first time since early 2004.

Early this past Saturday morning, I went out and did a 2 mile run with one of my dogs. Came back, got some breakfast with my family (me, my wife, my 14 year old son, and 10 year old daughter), and then took off for the weekend to western Pennsylvania for some snow tubing.

It took about 4 hours to get to the hotel. I did all of the driving. We got unpacked, took it easy for about an hour, and then headed to the slopes. We snow tubed for 3 hours. I never really took a break, except to take my daughter inside for about 5 minutes to get her hands warm (it was about 17-18 degrees). I probably went down the slopes about 30 times. No problems with balance, vertigo, etc.

After we finished, I drove the family 25 minutes north to see downtown Pittsburgh. Although Pittsburgh is still somewhat stereotyped as an old smoky steel town, those days are actually long gone. Pittsburgh has one of the most spectacular skylines in America. It was a lot of fun. Showed the kids a lot of the old history of the city, etc.

pittsburghskyline.com/content/20 … -new-year/

We went back to the hotel, got changed, and went out to dinner. I rarely eat in restaurants, but took the risk of going to one of my old favorites from my pre-MAV/Meniere’s days: Primanti Brothers ( primantibrothers.com/).

I had a huge chicken sandwich, lots of water, and did indeed chase it with some vitamins, dandelion root (natural diuretic for Meniere’s), and some medication.

We went back to the hotel, watched a TV program, and went to bed at about 11:30pm.

Long, but fun, day.

We got up early, toured some more of the city, and then headed about 35 minutes north to visit the pastor who married us almost 20 years ago. We had not seen him in 6 years. It was a lot of fun.

After that, we went out to lunch. Once again, I had a big sandwich, but was careful to use vitamins, dandelion root, and medication.

We then departed for home. I drove the family through a bit of a snow storm in western Pennsylvania, West Virginia, and home to southwestern Ohio. Took about 5 hours. No big problems…no MAV or Meniere’s issues. Got home about 6:45pm.

Total mileage for the weekend was a little over 600. I did all of the driving the entire time.

Had a light dinner. Got the kids to bed, and went to bed around 11pm.

I was curious as to how that fast paced a weekend would affect me. After all, this was a significant test. Didn’t do much damage. My ears were slightly more full, and I had a very light headache, but nothing major. As an aside, I did all of my physical therapy exercises twice per day on Saturday and Sunday. It helped keep me loose the entire time.

As a follow-up to the weekend, I got up this morning, went for a 2 mile run with my other dog, got my daughter off to school, went out and bought a new pair of running shoes, did some reading, and took care of some odds and ends. Had dinner around 5pm, and then went for another run at 7:30pm. 4 miles for the day. No major issues. I went back to my strict diet regimen today. I go back to work tomorrow (working Tuesday - Saturday this week).

To put this in perspective, I couldn’t do much at all during the winter of 2005 except suffer and try to work. That ended in late March 2005 with the loss of my job.

In the winter of 2006, I couldn’t do much either. In the winter of 2007, I was a bit better, and was just beginning to work part-time outside of the home again. In the winter of 2008, I was able to work outside of the home full-time, but it wasn’t easy, and I purposely chose a slow paced occupation at a massively reduced pay scale. Although I was improving, I was cautious. I would never have dared try anything like this 1 year ago.

There is always hope…despite some of the frustrating ups and downs we go through with this ailment.

I look forward to continued improvement this year.

Keep your chins up!

So I just have to ask what is your secret!!! :smiley:

— Begin quote from “Timeless”

So I just have to ask what is your secret!!! :smiley:

— End quote

I am not sure. The best thing I can say is that I kept trying different things until I kept improving. To be sure, as we know, we all respond differently to different regimens. Some of this might also be a bit of luck. It is always possible to turn for the worst, and I accept that. However, I will do everything to prevent it from occurring.

MSDXD,

Glad to hear things are improving slowly but surely. If some of it’s luck well there is nothing wrong with that! If your luck continues to help you…please pass it on to the rest of us. :smiley:

Joe

— Begin quote from “joseph0952”

MSDXD,

Glad to hear things are improving slowly but surely. If some of it’s luck well there is nothing wrong with that! If your luck continues to help you…please pass it on to the rest of us. :smiley:

Joe

— End quote

I will second that Joe…I would be willing to share…anything to make this better and more normal. :smiley:

— Begin quote from “MSDXD”

— Begin quote from “Timeless”

So I just have to ask what is your secret!!! :smiley:

— End quote

I am not sure. The best thing I can say is that I kept trying different things until I kept improving. To be sure, as we know, we all respond differently to different regimens. Some of this might also be a bit of luck. It is always possible to turn for the worst, and I accept that. However, I will do everything to prevent it from occurring.

— End quote

Are you on any medications , and do you use supplements . I am sure you have shared this somewhere on here before but would you mine telling us newbies what you feel has helped you the most?

It is nice to hear someone who has suffered for years with this having improvements…it gives the rest of us hope!

— Begin quote from “Timeless”

— Begin quote from “MSDXD”

— Begin quote from “Timeless”

So I just have to ask what is your secret!!! :smiley:

— End quote

— End quote

I am not sure. The best thing I can say is that I kept trying different things until I kept improving. To be sure, as we know, we all respond differently to different regimens. Some of this might also be a bit of luck. It is always possible to turn for the worst, and I accept that. However, I will do everything to prevent it from occurring.

Are you on any medications , and do you use supplements . I am sure you have shared this somewhere on here before but would you mine telling us newbies what you feel has helped you the most?

It is nice to hear someone who has suffered for years with this having improvements…it gives the rest of us hope!

— End quote

When I was diagnosed with MAV in August 2007, I was put on a trial of Serc & verapamil (120 mgs.) Prior to that, I was a one dimensional “atypical” Meniere’s diagnosis. Since March 2005 up to that point, I had been using low dose valium and a diuretic for treatment. I had also used the Meniett device, and it was beneficial to a certain extent. I also went through VRT, but it wasn’t has helpful as the Meniett. I tried other alternative treatments like acupuncture and upper cervical chiropractic treatment.

To make a long story short, the verapamil worked better than Serc. I gradually stopped using Serc. It was just verapamil, valium, low salt, and continued experimentation with diet.

In November of 2007, we increased to the verapamil dosage to 180 mg, and increased the valium dosage to 5 mg. per day in anticipation of a tough winter (I usually faltered in the winter).

Around March 2007, I eventually switched to 240 mg. of verapamil, and gradually tapered my valium dosage down as the weather was about to change. I had some trouble at that time with my ear tubes (they were initially inserted in 2006 when I started using the Meniett). When one came out, I had difficulty with my equilibrium. When the other came out shortly thereafter, I had a lot of problems. I went to a local doc to get the tubes back in. My equilibrium started to improve, although I had some ear infections that set me back. My doctor at the time–not the doc who re-inserted the tubes— thought that might be indicative of a fistula, but I lost track of him thereafter. He didn’t really seem committed to my case.

I went to another doctor in May. He thought my case was indeed MAV-related, but also felt there was a cervical component at play, and he didn’t think I had Meniere’s. He thought I might have SCD instead. He felt physical therapy–not VRT-- was the best mode of treatment for me, in addition to verapamil and valium. Round trip for P.T. was going to be 500+ miles, so I decided not to proceed.

After quite a bit of thought and deliberation, I decided to compile all of my data from the previous docs, and feed it to another doc for another opinion. After the initial appointment, he felt it was MAV, a palatal myoclonus, some cervical issues at play, but we needed to do some more extensive ear testing to get to the bottom of the fistula/scd/meniere’s mystery. He prescribed low dose effexor, had me continue with low dose valium, and referred me to physical therapy.

After undergoing around 4 hours of testing a few weeks later, he diagnosed me as approximately 60% MAV/40% Meniere’s, but with palatal myoclonus & cervical issues playing a role as well. A “hybrid” case, with “a lot going on.”

To my surprise, the physical therapy helped me the most…by far. To be sure, I continued to experiment with diet, stayed on my medication regimen…but really…the P.T. did it for me. It’s been the “big breakthrough.” My P.T. was amazing. Very sharp…more so than many docs. She didn’t see a huge amount of hope for me when we started, but after a few months of hard work, she sent me on my way…no need to continuing traveling to the office anymore…I had improved so much that I didn’t need to come back. Nonetheless, as both she and my doc said, I need to do the P.T. exercises at home every day. In short, “use it or lose it.”

They’re right. What I still want to know, and will ask during my next appointment, is…***WHY? Why…in clinical, step-by-step detail, did P.T. do so much for me? Is it really that major a component, or am I experiencing some sort of extra luck…a period of spontaneous remission that is lurking behind the scenes. ***

Having said all of that, I can’t say with 100% confidence that this would work for everyone. As noted, we tend to respond differently…and we have different sets of triggers…certain idiosyncracies some may respond to, and some may not. In summation, it’s just a matter of persevering…keep moving forward…until you hit a formula…a combination of things…that seem to work in synergy.

Daily:

2000 mg of Vitamin C
4000 IU of Vitamin D
One multi-vitamin
37.5 mg of Effexor
240 mg of Verapamil
Valium as needed. Dosage varies. I’ve used about 75 tablets (5 mg) since mid-July 2008.
Low salt diet.
Stay away from foods and other things that trigger MAV. Very strict.
Get enough sleep (major trigger).
Rarely drink alcohol. Never really did to begin with. Can’t drink beer or red wine. Strong triggers. A small glass of vodka here and there. Maybe once or twice per month. Vodka did not trigger symptoms for me.
P.T. exercises 2 to 3 times per day.
Exercise regularly, with a major concentration on my legs.

msdxd,
There certainly are a lot of parallells between your case and mine: multiple other diagnosises, possible SCDS component, ear tubes, verapamil, etc. Your symptoms as well, seem to track very similar to mine. I’ve also been seeing a frustratingly slow but very welcome improving trend. The true vertigo seems to be gone in my case. The acute dizziness also seems to be pretty much resolved. Now it’s just occassional light headedness and this is mild enough that it’s mostly just annoying and doesn’t really keep me from doing anything I want to do.

I have noticed an increased “headachey” feeling since taking the verapamil and wonder if it could be a side effect of the medication. I’d be curious to know if you’ve experienced anything like that. In my case it gets worse throughout the day and is definitely relieved by both sleep and exercise.

Bottom line for me though is that, if I look at the big picture, I am dramatically better than I was 16 or 18 months ago and I’m very hopeful that I’ll eventually get this all behind me.

Thanks for the post - good news is always welcome.

C

The verapamil side effect exists for me a little bit. To be sure, in the overall spectrum of things, it has definitely helped me more than hurt me.

Congratulations! So you were in my neck of the woods and from your description, very close! Glad you had a great time and thanks for sharing your story (as well as helping dispell the myth about Pgh being a smoky, old city. We haven’t been like that for years.)

Cheers, Bonnie

I LOVE HEARING SUCCESS STORIES!!! I too, am on Verapamil. I am having a rough week. That is wonderful how you got to vacation with your family and enjoy yourself! I too, hope that will be me someday. I’ve been in a negative slump lately. I am wondering if I should take valium with my Verapamil for my anxiety issues. My pharmacist said if you take valium with Verapamil, it can make you dizzy. So, I have been scared to take it together. My pharmacist also advised me against taking the Verapamil saying it would drastically lower my pressure (it never has). She freaks me out about medicine even more than I already am. Have you ever experienced a reaction taking valium and Verapamil together? I can’t get over how much you did, the driving, eating out, running, etc. Good for you!!!

  • Nance

— Begin quote from “nance”

I LOVE HEARING SUCCESS STORIES!!! I too, am on Verapamil. I am having a rough week. That is wonderful how you got to vacation with your family and enjoy yourself! I too, hope that will be me someday. I’ve been in a negative slump lately. I am wondering if I should take valium with my Verapamil for my anxiety issues. My pharmacist said if you take valium with Verapamil, it can make you dizzy. So, I have been scared to take it together. My pharmacist also advised me against taking the Verapamil saying it would drastically lower my pressure (it never has). She freaks me out about medicine even more than I already am. Have you ever experienced a reaction taking valium and Verapamil together? I can’t get over how much you did, the driving, eating out, running, etc. Good for you!!!

  • Nance

— End quote

No issues for me with valium & verapamil.

I am glad to hear you are doing so well!!! Sounds like a great mini-vacation you had.

— Begin quote from “bcrelief”

Congratulations! So you were in my neck of the woods and from your description, very close! Glad you had a great time and thanks for sharing your story (as well as helping dispell the myth about Pgh being a smoky, old city. We haven’t been like that for years.)

Cheers, Bonnie

— End quote

I love that city.

I do, however, prefer the old Snozone (Finleyville in the Mon Valley) to the new Snozone. The new Snozone has a decent ride,it’s fairly long, and the speed is ok. It’s just not as fast as the old Snozone, which was pretty extreme as far as snow tubing goes.

I remember back in early 2004 (MLK weekend) when my son and I went. They had to shut down some of the lanes because it was too icy, and the matts weren’t slowing bigger riders down well enough. Before the matts came out, the speed was so fast some of the bigger guys were coming too close to PA 88. They were coming up over the top, and starting to land in the hay just before metal barrier separating PA 88 from Snozone.

Next time we go, we’ll head down to Seven Springs, then work our way back up to Pittsburgh to see our pastor and take the Primanti’s risk again.

MSDXD,

Great to hear such a success story. Can I ask how you were physically before the tablets and PT. I ask because I get very sleepy tired and tired body feeling from the continuous background headache and painkillers but also feel bodily achy and exhausted and sweating after little exertion. Dr. added diagnosis of chronic fatigue syndrome to the MAV and I am wondering if they are separate or both the same thing. Also, can you give a little more detail on the PT.
Many Thanks
Christine

— Begin quote from “cmoc”

MSDXD,

Great to hear such a success story. Can I ask how you were physically before the tablets and PT. I ask because I get very sleepy tired and tired body feeling from the continuous background headache and painkillers but also feel bodily achy and exhausted and sweating after little exertion. Dr. added diagnosis of chronic fatigue syndrome to the MAV and I am wondering if they are separate or both the same thing. Also, can you give a little more detail on the PT.
Many Thanks
Christine

— End quote

I had been moving at a gradual, incremental, upward trajectory for the past few years prior to P.T. The P.T. can probably best be described as the most significant boost I’ve had thus far.

The description of your symptoms is somewhat similar to how I felt in 2005 and parts of 2006, although riding a stationary bike (I could not run), actually helped. For me, this started in January 2005 with a virus, and was exacerbated by head trauma in February of the same year.

Regarding P.T., I had gone through VRT during the summer of 2006, but it wasn’t extremely helpful. P.T. was completely different. She was very, very sharp, and put me through an extensive, disciplined program focused on my balance. She worked my core area through various methods, and had some other exercises for me to do as well. I started in July & had my last visit in early November. I do many of the exercises 2 - 3 times per day now. During Xmas break, I took a few days off, and did notice a difference. I was tighter, my balance wasn’t quite as good, and the pressure increased. Having said that, I did watch my diet during Xmas, but not as disciplined as I had been in years past. That probably played a role as well. Once I started doing the exercises daily, and went back on my diet regimen, I was back in business.