Improvemments?

Hi Everyone,

I have been trying my best to manage this Dizzy Condition for 15 years! For those of you who have been dealing with this nightmare for awhile…was wondering what small or big improvements you have made over the years?? The good part for me is that it has not gotten worse…the not so good part are the improvements have been very slow (but still thankful)…and i’m still far from 100% improved. Here are some of my improvements:

*Vertigo has dropped off significantly…maybe a half spin once a year

*Less Brain Fog than before

*Easier to fly on planes (farthest i fly is from LA to Kansas City)

*Take less medication

*Motion is a little less intense overall

Reasons for the improvement? My best guess would be because i watch my diet…meaning less caffeeine…little or no alcohol, little or no Msg, very little chocolate, working only a part-time job and the stress is less than the full-time job i use to have. Verapamil helps reduce some of the Tension in my head and the one tab of Xanex daily helps with the Motion so that i feel more stationary. I honestly believe if i were to return to my old eating/consuming caffeine habits + work a full-time and more stressful job…the Vertigo would return and the symptoms above would increase. Also…i soppose the body has a way of healing itself over the years to some degree.

Would like to hear any improvements you guys have made…

Joe

Joe

Hi Joe
Great to see that although you’ve suffered for the past 15 years, you have not gone backwards and although progress is slow, it’s all progress :slight_smile: !

I can only say I’ve been suffering for 2yrs & nearly 3 months (but who’s counting!!!). I’ve had enormous improvements Joe, but I had a complete and utter BIG CRASH which meant I had massive chronic symptoms, hospitalisation and bed-rest, housebound for months & months.

My improvements though are enormous (on a good day!)
I haven’t had true vertigo for 2 years
I am very rarely nauseous, except after travelling as I have now developed motion sickness which is improving but that’s still an issue for me
I haven’t had any brain fog in well over a year and believe me, it was chronic
My phonophobia has improved enormously but I still wear ear plugs to the gym
I am not dizzy very often
My photophobia is still there, but much less

Generally Joe, all those dreadful symptoms we suffer from with from MAV are much better but I don’t work now so find it hard to gauge how I would ‘rate’ in the real world. I agree with you Joe that my diet (although I’m not perfect by a LONG shot) and the meds (most definitely meds) and the passing of time, have all contributed to the improvement. I’m still looking for another 30% to be tip-top, but can function reasonably well, with life-style considerations. I’m not quite ready to put myself to the full test, by pushing myself too much. I’m going slowly, slowly and hope that there’s more good health to come!

regards
judy :stuck_out_tongue:
PS: Great subject Joe, we all need to hear of improvements even if it’s not quite complete! :slight_smile:

It is good to hear of improvements on a board of people who suffer with a chronic illness.

I’ve had improvements with the diet. I adhere to it strictly and have just recently started adding things back. It’s good to know that I can have pine nuts. But for the life of me I can’t remember the two things that caused me problems a few weeks ago and that was before I started the Topamax. I’m going to have to make a list :slight_smile: I became a believer in the diet not until I started adding back and felt the difference.

Each med I’ve taken has given me some improvement, in mental clarity, in all the aura (and I had every aura possible, I swear to you!) And then it just snowballs. The more improvements lead to being more active, more alive, and that leads to move improvements. I’m exquisitely sensitive to my symptoms so I never go beyond my limits.

Oh, and the supplements - I can’t tell if they’ve helped, but I take EPA/DHA, mag and ribo, CoQ.

As I stated in another post, I live a quieter, calmer life, with better boundaries to the demands of others, including my clients and employees. My husband and I have a better appreciation of each after having gone through this. All these things add to less stress, less migraine trigger.

A nice thought-provoking post, thanks, Joe

Julie

Thanks Julie & Judy for your input.

Judy…Glad to hear you have made some improvements too. Are you saying that when you had the Big Crash…that was a serious Relapse? Also…you said that your not working now…is that because you don’t believe you can work or other personal reasons? Have you applied for SSDI? I have applied…even though i’m working part-time. They have turned me down once…and getting ready to hear from Social Security again…which will probably turn me down the 2nd time. The 3rd and final time you get a hearing with a judge. I hope he/she will understand my situation and if not…atleast i can say i tried. I basically want to be compensated for not being able to do the work i use to do plus not able to work full-time. You said that you have not had brain fog in over a year? What happens if you get less than 8 hrs of sleep per day? Does the brain fog return? I’m also going slowly with my healing process… and not pushing myself…that to me is the only way. After many years with this illness i know there appears to be no quick fix. By the way, i have suffered from Motion Sickness ALL my life…driving thru curvey narrow roads in the mountains particularly as a passenger, carnival rides that go in circles and even riding on a fishing boat. Most people out grow it…but less than 10% do not…and i’m in that 10%. I was told by my doc at UCLA that atleast 50% or more of all MAV patients are folks who never out grew Motion Sickness. Kind of ironic i ended up with this dreadful condition!

Julie…i agree that living a quieter, calmer life with better boundries on demands of people helps so much more! You said that every medication you’ve taken gives you some mental clarity…but then you said it all Snowballs?? What exactly did you mean by that? Is that a positive? I wish i could say that every medication has been helpful…but that’s not the case. Prozac and Paxil were disasters for me!

Joe

Joe,

I have made most all of the same changes in my lifestyle you have, especially the diet. I still work a full time job, and take night classes so that I can move into a position a little more desk bound. I got lucky with the meds in that we found something that worked relatively quick.

Overall, I would say that I am about 85% of what I used to be. I have days that I am almost 100%, but I have to be careful on those days that I don’t set myself off. I also still get what I call “dizzy spells.” On the days that I get the spells, I am anywhere from 70% to 40% of “normal.” I don’t get the 24/7 dizzies anymore, and I only get the brain fog during the worse of the dizzyspells.

Brain…so glad you continue to improve…hats off too you! Of all the medications and various treatments you’ve had…what would you say has been the most helpful medication for you? I nearly quit Verapamil…but stuck with it and it has decreased some of the Tension in my head.

Keep getting better…

Joe

Hi Joe, some great questions there!

When I said I had my BIG CRASH (BC), I thought I had never suffered from any symptoms prior to the onset, so it was the manifestation of the disease. In hindsight, I had just a couple of ‘signs’ that something was on its way; about 12 months prior to the BC, I had what I thought was a very unusual virus, which I believe was really bad motion sickness, laying on the bathroom floor for over 24 hours not being able to turn my head, nausea, vomitting, diahorrea. A few months after that I developed a really bad ear ache which my GP checked out and couldn’t find any infection but gave me antibiotics just in case. I now know them to be the precursers to my BC as I’d never suffered with those symptoms before. But prior to that I’d NEVER had as much as a headache. I didn’t get car sickness but have never been able to tolerate crazy rides at the amuzement park which now makes a lot of sense.

I left work because I’d had successful spinal surgery about 14 years ago but was now suffering with advanced arthritis, so that was the initial reason. I did make plans to go back to work later just shorter hours. Then about 4 months after that my parents were both killed in a car accident, so I was too traumatised to do anything. Finally, (they say bad luck comes in three’s!), I had my BC 9 months later. I tried to go back to work about 12 months after the MAV started but was still too sick. I think I could probably start back now, but only short hours because I don’t think I’m recovered enough just yet. I know I’ll have used up all my ‘good energy’ to be at work and my family would get all the bad stuff when I got home so it’s just not worth it yet. I’m 49 and have worked all my life, and have contemplated retirement now because I think I just want to value what quality of life I have and enjoy my family too. I don’t think I’m entitled to any social welfare assistance because in Oz, it’s means tested and I think we’re just over the threshold.

If I don’t get enough sleep (which I try never to do), I suppose you could call it brain fog, or more just feeling really nauseous and unwell.

— Begin quote from “joseph0952”

I’m also going slowly with my healing process… and not pushing myself…that to me is the only way. After many years with this illness i know there appears to be no quick fix.

— End quote

I feel the same way too Joe, I’ll let my body tell me how far to push things. And of course the meds, they play a big part in my recovery, just trying to find the magic mix. Currently I’m taking Klonopin 1mg per day and have just started a tricyclic antidepressant called Dothep and just worked up to 75mg daily. I’m ditching my sandomigran and have gradually gone from 7 tabs, to 2 tabs per day. I’m feeling a little ‘out of sorts’ with the change of meds so I probably won’t know their effectiveness for another 4-6 weeks so I’ll cross my fingers. Have you found any special meds that help you Joe?
regards
Judy

— Begin quote from “joseph0952”

but then you said it all Snowballs?? What exactly did you mean by that? Is that a positive? I wish i could say that every medication has been helpful…but that’s not the case. Prozac and Paxil were disasters for me!

Joe

— End quote

Yea, i knew when I was writing that it was not clear and snowballing is probably not the right word to use. I LOVE having Dopamax to blame my lack of verbal skills on :slight_smile: In short, what I meant was feeling good leads to more feeling good.

Feeling good, meant I could get out of bed. That meant I spent less time thinking and feeling my symptoms (because i feel them the most when I’m still). It also meant that I could start using my body again. It also meant that emotionally I could start feeling better about myself, more confident, etc, etc. And each med gave me more feeling good (less dizziness), more improvement, more functionality, and more feeling good.

I was elated the first day I could walk out to the mailbox. And then when I could walk to the corner. And then down the road. Now I take daily 30 minute walks. A year ago i could barely get to the bathroom. When I told my mom on the phone that I was walking for 30 minutes, she said “Alone?!” She was so pleased, she lives 800 miles away and has been so worried about me.

I’ve had no medication disasters aside from the difficult titration with Zoloft. Everything else has been easy, but I am so ultraconservative because I am the canary in the coal mine - even doctors have told me that - so I have always gone extremely slow, cutting those pills into tiny pieces, thinking, how could this little micro-piece do anything (and then I remembered the 70’s when I was slipped a little dot of something)

I feel lucky, because if anybody was going to have one disaster after another, it should have been me. I’m not well enough yet to ride in the car without Valium, although I take less and the price I pay is less. I have a long way to go, but compared to a year ago, you just wouldn’t believe it.

Julie

Judy,

Your story is interesting to me, and the way you put it - that there were signs that it was coming on for years. I have my own version. This was definitely building steam for maybe 15 years and i had a small crash followed by a big crash followed by an earth quake.

You’ve suffered a lot of trauma and, in my case, I’ve considered those types of events as part of this monster’s development.

Julie

Hi Julie,
I think you’re right with the aspect of trauma, I’ve always considered myself a real ‘marvel’ (!) the way I’ve handled stress in my life, but perhaps that’s the trigger that sets all other things in motion. My neuro sais NO, but I think even though there are obviously familial factors to the disease, I positively know that there is now a correlation between my MAV today and stress and anxiety, hence the Klonopin and the tricyclic antidepressant. It stands to reason that it could also be a trigger for THE BIG ONE two years ago!

Really glad to hear you’re having such success with your meds, more power to you Julie :stuck_out_tongue:
regards
Judy

…and Oh Julie, shouldn’t you be asleep by now??? 8)

Judy :mrgreen:

You know, I just looked at the clock and I thought, shoot, I meant to get to bed by 9 tonight cause I haven’t been sleeping well this week, and here I am still posting on this board. “I better get off this board” but then I see there’s another new post, well, I better go look at it (I have no impulse control - can I blame that on Topa too?)

You crack me up! :mrgreen:

Okay, I’ve made a clean sweep of the board - Julie has left the building :lol:

— Begin quote from “joseph0952”

Brain…so glad you continue to improve…hats off too you! Of all the medications and various treatments you’ve had…what would you say has been the most helpful medication for you? I nearly quit Verapamil…but stuck with it and it has decreased some of the Tension in my head.

Keep getting better…

Joe

— End quote

Joe, the meds that I found are a combination of Klonopin and Depakote. From what I have found on various forums is that doctors do not subsribe to the same theory of treatment. Some believe in the anti-seizure family, others it’s beta blockers or (?)channel c blockers. From what I have seen, what works for one person does not work for another. It’s just a shame that most doctors believe in one family of medication for migraine preventions.

Brian…i just looked up Depakote and says it is mostly used for bi-polor and i believe seizures? It also went to to say if you take this medication to be sure you have your liver monitored. I guess for some people it can be hard on the liver??

Well…i’m glad the combination of Klonopin and Depakote appears to be giving you a new lease on life. I guess we all have to find that right combination.

Keep getting better.

Joe

Judy,

Wow! You certainly have been thru some difficult times with this illness. When you said that you layed on the bathroom floor for 24 hours and not being able to turn your head… something similar happened to me but a shorter duration. From 1989-1991 i had occiasional vertigo episodes (2 a year)…and would wake up from sleep at night with the room spinning and i would get horribly sick…but within 2-3 days i would resume to normal. Then in the summer of 1992 i had another intense vertigo episode at night…and woke me up from sleep. It was extrmely intense…and i threw up till i had the dry heaves. It was a nightmare! I literally crawled from the bathroom to the living room couch…sat down and did not move my head for 3-4 hours. Then very slowly i walked over to my bed…sat down gently…layed down with 2-3 pillows beneath my head. Then i began to feel a rocking motion sensation and much of it was felt in my head and that is when this condition became chronic.

Joe

Joe, it’s uncanny just how many symptoms are so similar to one another’s on this board. Your condition sounded as though it followed very similar evolutionary stages as mine, and I’m sure many others will feel the same too. And you were spot on when you said that you knew when your condition became chronic. I like the way you’re dealing with it all too Joe, if we try to fight it too much, we tend to come off second-best don’t we? I just take a day at a time, but I am still hoping for more improvement yet. Because I’m reducing one med at the moment and taking on another, I don’t feel as well as I was a few weeks ago but am hoping once the tricyclic antidepressent settles down, It’ll be much improved or it will be back to the drawing board for me! :? But not before I increase/decrease doses before I declare anything unsuitable!
regards
Judy

Judy…when i look back at how gradually this dizzy condition came on…it seems like i was actually dealing with “Benign Positional Vertigo”. Back in late 1980’s and very early 90’s i didnot even know what BPV was…doctors were probably less familar with it too. Think about it…i was most likely changing my sleeping position at night from left to right. The right side is the bad side…i thought for the longest time my right ear was dysfunctional because when i woke up feeling vertigo i noticed a few times i had just switched over in bed from left to right side. My doc at UCLA said it is possbile that i had benign positional vertigo at the beginning and then evolved it MAV. Who knows for sure??

Yes Judy…one day at a time!

Sending you lots of good luck!

Joe

Judy and Joe,

On the MDDS board that Jenny belongs to, the moderator talks about how the illness morphs as it gets worse and morphs agains as it improves. I find it to be so, going both ways. interesting.

Julie

Julie,

Is that a fact… that’s very interesting and comforting to know. Sometimes when some new symptom pops up, I get a bit nervous that it might be another downward spiral, but so far, so good. I’ll keep that thought in the back of my mind which will be much more helpful than stressing out about it all! :stuck_out_tongue:

regards
Judy