Hope

Specific Illnesses & Conditions VM/MAV
1

As all you are acutely aware, living with this ailment can be more than a daunting task. As I’ve explained to several friends and acquaintances, once this ailment gets a hold of you, there are times when you simply can’t do anything about it. No matter what background you come from, what kind of physical condition you’re in, etc., if it has you, it has you.

A little over 3 weeks ago, after a 3 year struggle with this ailment, I decided to try to work outside the home on a full-time basis. I was a bit apprehensive, and taking the job was basically designed to test my threshold, but so far, it’s worked out pretty well. In fact, after 3 weeks, I’m improving even more.

At first, it was a difficult adjustment. I had some rough spells, and had some doubts, but persevered, and hid my symptoms well. I knew when to accelerate my activities, and I knew when to back off. In short, I paced myself as judiciously as possible. At the end of last week, I seemed to hit my stride, and I’m becoming less concerned about the future.

It is noteworthy that during the last 3 weeks, outside of my job, I’d been working on an extensive, fairly complex article for a publication. When I finished the project, it came out to over 9,000 words and 26 pages. I was fortunate enough to get some excellent reviews, and most importantly, I didn’t experience as much difficulty in completing the project compared to previous projects a few years ago, when I was not working outside of the home.

Multi-tasking between a new job, and finishing and editing the article, proved to be palatable. In taking into account my normal work hours, and the hours required to complete the article, I was essentially working 52 hour weeks. I have not been able to do anything close to that since late 2004, before I was stricken with this ailment.

All told, when you feel down and out, when you feel as though your future is extremely limited, hope does exist.

2

It’s nice to finally see someone writing good news. I’m happy for you.
Just wondering… Are you taking any meds at the moment? Have you been getting any kind of treatment that has helped you get better, or did you just start feeling better by yourself?
Hope things continue to go well for you.
Anette

3

Glad to hear that you are making improvement. Are you still taking medication? If yes…what are you taking now?

Keep getting better…

Joe

4

Verapamil 180SR/ER, and valium. I had started on verapamil 120 SR in August, and increased the dosage in November. Valium was usually in the range of 5mg per week, but due to problems I have during the winter, we increased the dosage to 5mg per day. I will back off of the the valium in late March, when the weather improves a bit.

Very strict adherence to the diet regimen has also helped. I had always been disciplined in that regard, but Dr. Buchholz book ,“Heal Your Headache”, has been an extra catalyst in the improvement.

Prior to all of this, I was diagnosed by as “atypical Meniere’s”, and was treated with valium and a diuretic. The verapamil has been very helpul.

5

Msdxd,

I am currently on 240mg of Verapamil daily and i also take one tab of of Xanex…0.25 strength which is the lowest you can purchase. I believe the rocking and tension in my head has subsided some…but it appears i still need the one tab of Xanex to function daily. My hope was that if the Verapamil works i would not have to depond on the Xanex…but not clear if that is going to happen?? I have been on the Verapamil for 4.5 weeks…so i have 1 1/2 weeks left…then my doctor and myself will decide where we go from here. The doc said two months should be plenty of time to find out if Verapamil is helpful. How long did it take you before you began to realize the Verapamil was beginning to help you?

Joe

6

Joe, I know you were waiting for an answer as to when you should say the verapamil isn’t going to help–and I’ve never tried it, so I can’t say anything from personal experience. I know for migraine preventives, it can take a few months, and the goal isn’t cure, but 50% reduction. Do you feel any better?

I do notice that most of us use benzos. I was started on klonopin by the neuro-otologist, and have been on it for 4 years. I have cut down, but want to go further. I’m definitely better–when I started on it I couldn’t function: severe dizziness, nausea. Now, I have my unsteady moments, but am so much better.

Per Jenny’s advice, I subscribed to the Mal de disembarkment group, but haven’t posted, just read. Most people in that group rely on klonopin or another benzo. There’s so much stigma attached to them, and I hate being on a med that causes dependence, but functioning is so important.

Maybe you can somehow rate your symptoms and determine if the verapamil has given you any relief. Good luck. It’s all a bit of trial and error.
Kira

7

MSDXD,

that is GREAT news! I knew you had started the new job and have been wondering how you’ve been doing. I also know that you’ve had an extremely harsh winter in chicago. Dr. Hain must be very pleased.

i think what you’re saying, but let me clarify this with you, that getting out there and working, but making sure you don’t overdo it, has actually helped your healing? You are feeling even better than before you went out to work? I’ve been wondering the same thing about myself. I’ve been really happy with the medicinal treatment, but I think that as my life gets more normal, the less rocking I have. Sometimes I wonder if i’m just dealing with it better, i’m not sure.

I’m also glad to hear that you think the diet helps. I’m extremely disciplined and really have little trouble following the diet, i just wonder sometimes how much it has helped - “is it the bananas or the Zoloft?” :slight_smile: I decided to experiment a couple of weeks ago and added something back. I definitely got more dizzy within a day. I think I’ll stick with the diet.

Whatever - I am SO HAPPY for you! Keep us posted,

Julie

8

— Begin quote from “joseph0952”

Msdxd,

I am currently on 240mg of Verapamil daily and i also take one tab of of Xanex…0.25 strength which is the lowest you can purchase. I believe the rocking and tension in my head has subsided some…but it appears i still need the one tab of Xanex to function daily. My hope was that if the Verapamil works i would not have to depond on the Xanex…but not clear if that is going to happen?? I have been on the Verapamil for 4.5 weeks…so i have 1 1/2 weeks left…then my doctor and myself will decide where we go from here. The doc said two months should be plenty of time to find out if Verapamil is helpful. How long did it take you before you began to realize the Verapamil was beginning to help you?

Joe

— End quote

Verapamil started working within a week, but that is unusual. A month to 6 weeks is probably the best range.

9

— Begin quote from “Julie”

MSDXD,

that is GREAT news! I knew you had started the new job and have been wondering how you’ve been doing. I also know that you’ve had an extremely harsh winter in chicago. Dr. Hain must be very pleased.

i think what you’re saying, but let me clarify this with you, that getting out there and working, but making sure you don’t overdo it, has actually helped your healing? You are feeling even better than before you went out to work? I’ve been wondering the same thing about myself. I’ve been really happy with the medicinal treatment, but I think that as my life gets more normal, the less rocking I have. Sometimes I wonder if i’m just dealing with it better, i’m not sure.

I’m also glad to hear that you think the diet helps. I’m extremely disciplined and really have little trouble following the diet, i just wonder sometimes how much it has helped - “is it the bananas or the Zoloft?” :slight_smile: I decided to experiment a couple of weeks ago and added something back. I definitely got more dizzy within a day. I think I’ll stick with the diet.

Whatever - I am SO HAPPY for you! Keep us posted,

Julie

— End quote

Indeed, it’s the type of work. It allows me to accelerate and back off. Prior to coming down with this a few years ago, I did travel a lot, and worked long hours at a fast pace…for years. I don’t think I could do that now.

Yes. I think the ability to get out of the house and be more productive—but at a controlled pace----has been helpful.

I’m intrigued to see what happens in about 5-6 weeks when we get an appreciable weather change.

Hang in there. Hope exists…definitely.