Kvetch

Specific Illnesses & Conditions VM/MAV
1

Lousy day. Not terrible, but a bummer. Maybe a multi-day period of lousies.

Nothing horrific, nothing I urgently need advice about, just want to kvetch to my buds.

I’ve been reading others’ posts and thinking, gawd, I’m lucky I’m in much better shape these days, and . . . well. . . I still am! I mean I am in much better shape than when I felt fully incapacitated, and also I’m in much better shape than so many folks who are utterly brutalized by this.

But that doesn’t get to the kvetching. So . . .

I swam Wednesday, and lost track of what lap I was on and what strokes I’d been using. Same thing Friday. Each time, I soldiered on, but have no way of knowing whether I completed my routine. I can call this an epileptic or an MAV event, doesn’t make much difference. It means I think of myself as out of control to some unknown degree, and it also means I am bummed and beat for the rest of the day. My sweetheart reminds me that this is a normal consequence of such episodes.

Today she and I were going to be taken out for dinner by Marc, one of our closest friends, to celebrate our early-February birthdays. The weather’s been very changeable, though, so fuck me. Shortly after getting up, I started feeling it.

Meanwhile, we tried to gain some control over our house, her dusting surfaces, me cleaning shelves, books, records, CDs, DVDs, records &C, plus paddle fans and floors. Well, I’d get up on the ladder and work for a while, and I’d get queasier and queasier, more headachey and dizzy. I’d have to get down. Go back up for a bit, same thing. Often alternating between my gut and my head. Cooked myself some oatmeal, felt better for a bit, then the feeling returned.

I’d lie down or use the toilet and feel somewhat better, and try again. Same damned thing. Eventually
I called Marc to postpone.

My neurotologist has me on a high dose of nortriptaline, in consultation with my neurologist, who has me on a high dose of vimpat, an anti-seizure drug. My neurologist also provided lorazepam for me to take following ictal behavior (clear temporal seizure-type activity) or aura. Fortunately–this goes into the small favors department–I’ve had neither, meaning no twitchies, no quasi-hallucination, no fuzzy-headedness.

I’m awfully glad that I don’t have to take care of anyone or anything today, and that my sweetheart is fully on board with this stuff. I know that others on this board are much less lucky. One thing: in a month, when it’s time for me to give a three-hour seminar, I’m going to have a lorazepam in my shirt pocket.

2

Totally relate, had been having an ok week and then it was time for a get together for my sister in law and I had a bad day, it seems I can’t find anything to turn around a day once it goes bad…the best I can do is hit the Clonazopan and suffer through the evening."…my wife is just starting to understand we should cancel things when I don’t feel good, it’s no fun for either of us on a bad day!

3

Sorry to hear you are having a rough patch. I noticed you are around DC, I am right outside NYC. You are right, the weather this winter has been very strange and at least for me, I believe that weather changes are a big trigger. I’ve noticed there have been several people here who have complained about weather changes, wondering if many are in the northeast.
Hoping you are back in the saddle soon, you are always helpful to everyone on here.

4

Hey David -

I find the weather changes to be very challenging. Not so much due to dizziness - that’s mostly under control now - but headache and “coathanger” shoulder and neck aches and just plain feeling crummy. I hate being a barometer. I can be going along just fine and then, bam. Where did this come from? The weather is probably going to change!

Yes, I could be much worse - I’m almost never incapacitated like some of the folks who post here, so I’m very grateful for that.

But it would be nice to just feel good and not worry that it’s going to be interrupted on a regular basis, wouldn’t it??

Hang in there, and I hope you feel much better tomorrow.

5

David, this is common to me after doing too much (hence the CFS diagnosis which I sort of dispute). Do you notice these episodes after you have pushed yourself too much (frequently) or was this a one off. Maybe the Nor etc. is keeping this under control most of the time and without it you would be floored more frequently. The “soldiering on” is probably a clue. When you feel you are “soldiering on” its time to stop (if its possible). I havent learnt this lesson yet :frowning:

Christine

6

Hi David.

I just signed on to write a post about having a series of bad days. Lots of symptoms each day with periods of being okay enough to get things done or halfway done (just like you listed - cleaning the home, running to post office {well, driving & walking into, not actually running}, doing laundry) but not okay enough to feel like a “normal” person (ie. no MAV). I had a visual aura a week ago and every day since I get all twitchy around the time that it occurred and then try to calm down when that time is over. I feel bummed and worn out because of having the aura. For me, it’s like I failed at something and it makes me feel bad. (The last few years I’ve had 9-13 months in-between auras; since Dec 2011 I’ve had 2 - just 6 weeks in-between.) I know it all could be worse; I do know that. But still, what I do have just wears me down sometimes.

Anyway, I’ve been meaning to post all this and ask others if this type of living seems normal for MAV. Then I read your post.

I guess it is.

I find that the weather really affects me - on a daily basis. I live in Indiana and the barometric pressure here changes multiple times per day- especially during spring - which seems to have started in Jan this year. I can tell when it’s headed up or down or if it stays high (over 30.00) for more than 2 hours. Like maryalice I’m tired of being a barometer. It sucks when it changes so quickly and so often. There’s no adapting to it.

I’m not on any meds yet - I’m still in the “try lifestyle changes” phase. Am learning that certain foods do indeed cause symptoms to show up - chocolate, processed foods, etc.

I am sorry that you are having a rough patch. I appreciate you writing about it. You’ve helped me in doing so.

Wishing you a good day today and better ones ahead ~ Molly

7

Hi David…Sorry you are having such a rough time. I live in NJ and the constant weather changes are a big trigger for me lately. My husband and I also cleaned the entire house, dusted, had the furnace serviced, put in heavy duty air filter, etc in the hopes that it would ease my symptoms a little. No luck. I have found no way to adjust to the weather changes. My house is clean, I follow the migraine diet and lifestyle changes (no shopping, no large crowded rooms, no bright lights and on and on). I say this almost everytime I post: MAV sucks!.

I hope you have started to feel better today! Take care,

Karen

P.S. For some reason, and I am very happy about this, today is a pretty good day!

8

I too relate to “lousy” days David. When fragments of symptoms dog you all day and nothing you try works and it’s frustration alley. And the having to cancel thing - I hate that, especially when you’ve spent the day willing yourself better to be able to go and at the last moment you just have to give in and admit you’re not going to make it. Hope things are less troublesome with you now. BTW never heard the word ‘kvetch’ before, had to look it up. Great word!

Brenda

9

Hi David,

I think we all know exactly how you feel and it’s so frustrating.

I’ve had chronic migraine episodes now for long enough that when I’m in these rough patches I don’t commit to any social engagements - it’s too disappointing all round if I have to pull out. Friends and family all (well, mostly all) ‘get it’ now and don’t press me to commit to anything and are actually really helpful - asking if I need any help and so on.

Always good to have benzos on stand by!

Vic

10

Hi David,

Despite the setbacks that you describe, it is pretty clear between the lines that you are physically active, able to do things around the house, and that you are getting ready for a presentation. So those are all really positive things that a hell of a lot of people on this board cannot do.

To be honest, I think the weather has a lot to do with this. I live in Chicago and it has been really weird this year. We only had two or three snow days and it has been in the 40s. When I was a kid, we had one year when the temperature was below zero the whole month of January, period. Global warming, I think. My wife gets migraines pretty rarely, and she has been hit, and I have felt a creeping migraine for weeks, and had a relapse last Thursday.

For the presentation that you are giving, might I suggest a beta-blocker as well as the benzo. Beta blockers prevent the heart from going into a stutter; I have been on one for 15 years (my father as well) for migraines and also because it helps take the edge off situational high blood pressure. I used to be a law professor and would have to lecture to a hundred students, the beta blocker was useful I think. Might discuss whether that would be compatible with your current drugs.

11

Longshort, I second the beta blocker. Although I dont use them all the time, I have 10mg propanalol in the cupboard, I take one before any situation where I know the “nerves” might kick in. Have used them when I went to a school reunion and also for an MRI scan. I lay in the MRI scanner waiting for the heart palps and was calm as a cucumber. Brilliant standby.

Christine