Hello, Relapse and Question

Specific Illnesses & Conditions VM/MAV
1

Hi Adam and all,

I haven’t been in here for a while. Got ill four and a half years ago and have had a pretty fantastic year symptom wise - some breakthrough symptoms for up to 2 weeks at a time, but otherwise dizzy free thanks to propranonol. Have been working like crazy to make up for all the time I took off ill with this when I first got dizzy, so have been mostly off the boards apart from the odd fleeting lurk around. I know I can end up spending hours ‘chatting’ and avoiding my work.

Anyway, some big stress/anxiety (now resolved) combined with my period has taken me down in to the dizzy pit again. Happened 3 weeks ago. The symptoms are more severe than a ten week relapse I had the X Mas before last. I get fairly punishing photosensitivity 24/7 - sunlight slays me and intensifies my symptoms. I am having vertigo mostly at night although some in the day and the lightheadedness has got so bad I feel like I’m on a drug trip for portions of the day. The difficulty is this impacts heavily on my cognition and ability to work - I am in the middle of a very intense deadline so things have been rough. Work don’t know I am ill - they would panic.

I saw the neurotologist and have done what I probably should have done months back, upping my tiny dose of propranonol from 20mg a day to 40mg. I am very sensitive to drugs, on the up side this means small amounts can work, on the down side I can suffer heavily from SE’s which is why I didn’t go up previously. I am seeing a v. slow improvement, although things seem to have slid backwards today, which is disheartening.

Adam or anyone else, I was wondering, do you know the amount of time it is likely to take for a titration up to have an impact on symptoms with a beta blocker? I know it took about 2 and half weeks when I first started it about a year ago to get the symptoms under control. I don’t know the cited time frame for propranonol to take effect as a preventative and can’t find the info on the net. I realise this might be a how long is a piece of string question, but I’m guessing there is ofen a cited time frame.

How are you Adam? I chat to Scott and he updates me on how you’re doing from time to time, but was wondering how you are now.

best,

Hannah

2

Hi Hannah

Scott mentioned you were not doing too well – not good :frowning:

I’ve been OK… still pretty stable on neurontin and pizotifen. Still varies in intensity from day to day but overall it is manageable.

How do you feel on the propranolol? Do you have trouble with its side effects? It is really one of the few drugs I found relatively easy to take, but didn’t enjoy the fatigue. I was taking 240mg at one stage daily but it had absolutely no effect on me unfortunately.

I have heard 80mg being the sweet spot where things really start to get better, but you were getting benefit at 20mg so that may just be a meaningless anecdotal observation.

Adam

3

Hi adam,

Good to hear from you and glad you are doing well.

I definitely experience the fatigue with the propranonol - no question. I was immensely tired when I first started taking it - hard to keep awake for periods of the day but it definitely got a lot better over time. I am experiencing the tiredness intermittently again now that I have titrated up. I am crawling my way through a piece of work, hankering after sleep a lot of the time. However I know it got better so I know give it enough time I should habituate. In terms of SE’s this is the most benign drug I have taken - my experiences with some of the others were pretty bad and they also didn’t rid me of my symptoms.

The other big downer with propranonol is the weight gain. Fortunately I was slim to start with but I have to say my I’m not enjoying getting fatter - I am now 9 pounds heavier than I’ve ever been and it’s very, very hard to lose. I used to have a fast metabolism, but no more. Again, if the drug continues to work for me - the jury is still out on that - then I will take the weight gain - it beats being dizzy.

The weirdest SE is it impacts on my memory - the main reason I tried to avoid titrating up as being mentally on the ball is a big part of my job. To be honest, now I have worked out it’s the prop that is messing with my short term memory, I have relaxed about it. I was wondering what the hell was happening. It’s not great but again it’s liveable with. If the drug works I’m happy to put up with a myriad of side effects as long as they aren’t disabling or hugely intrusive.

I have definitely improved since it started 3 wks ago. Being at the computer is no longer the trial it was. I coulnd’t really tolerate a computer screen initially as the light was too much. My cognition is also better and I am less dizzy. My biggest problem is going out - inside my house I spend long periods at a manageable level - out and about - particularly in the sunshine I quickly become hugely spacey.

One thing I would be really interested in talking to a neuro about is sunlight. I know I am photosensitive, but the curious thing is that the sunlight actively exacerbates my symptoms. It’s not simply that I don’t like it and want to wear shades. There is a direct correlation between how much exposure I have to light (particularly sunshine) and how dizzy/spacey I am. The effect is pretty immediate. If it is an overcast day with very little sunshine coming through the window I am a lot better.

Anyway, I’m rabbiting on. I’m mainly kicking myself that I didn’t try a triptan when there were the first signs of this happening. For a few days before it hit big time, I was getting brief periods of photosensitivity cutting in and out. I’ve never tried a triptan but I have a feeling I might have been able to halt it.

Have you ever used triptans? Do they have any positive effect on you at all? I’ve even thought about trying one now, see what it does. I have this probably bogus notion that it might interrupt the attack and take me back to normal asap. Then again I am scared it will knock me for six and I might make myself worse. I tried taking a tiny amount of xanax (alprazolam) ended up fast asleep for an entire afternoon and brought on a big load of vertigo the next day. For some reasons benzos bring me no relief, which is a shame.

Anyway, good to hear from you Adam. Am in with the neurologist in 3 wks so I can hit them with a load of questions.

best,

H.