Medication - opinions wanted please

Just a quick recap as I’m quite new on here and don’t really know you all very well yet. But I had occasional spells of vertigo for about five years, followed by a pretty much constant problem since Dec 2009. I was diagnosed with MAV last May, but also with BPPV last November, and it seems to fit that I have both, as I seem to have quite classic symptoms for both.

I’ve been on pizotifen and propranolol for about six months now. Recently I upped the propranolol (gradually) from 40 mg per day to 80, and I have to say I’ve really seen an improvement. Although I still can provoke a bit of rotational vertigo if I lie down fast or turn over to the right in bed, I think that’s the BPPV-side of things. It did disappear gradually but the false movement sensations had disappeared, and also my tolerance for travelling improved immensely with the motion sickness settling back down to how I used to be before MAV.

Anyway, despite initially being very reluctant to take medication every day, I seem to have accepted this, and I’ve been lucky that I tolerate both medications well. My only problem with pizotifen is that I never feel full up when I eat and as a consequence have put on some weight (~10 lb). I will admit to being a bit obsessive about my weight, and although my BMI is still well within normal, I don’t feel too good with this extra weight on me. More of a concern is that if I’ve put on 10 lb in 6 months, will it be 20 lb after a year and so on?? Anyway, I decided to cut my pizotifen down with a view to stopping them as I have felt that it’s the propranolol that is helping most. I tried this about a month ago, but after three days started to get false sensations of movement when I was sitting still, so I upped the dose back again and that stopped. Then I decided that perhaps this was all in my mind, and I was getting worse with my balance problems because I was expecting to? So I’ve cut back down again nearly a week ago. Well now I feel much worse, with false movement again, and also I just feel ‘off’ and spaced out. If I move my head rapidly it will provoke mild rotational vertigo and nausea.

I really don’t know exactly what it is I want to ask! But I just would appreciate anyone who is taking the time to read this, and if anyone has any thoughts or comments on this I would appreciate those too. I feel really down tonight, feeling how I did months ago again. I guess I didn’t realise how much I’d improved until I’ve slid backwards again. I don’t know whether to stick it out with the lower dose or just to give up and increase it and try harder to control my weight.

HI
Yes, that is a quandry. I know Victoria is in the same boat…tired of the extra weight from Prothiaden, but not wanting to deal with mav symptoms either. Sadly, I think it comes down to a choice…how bad is it? Your body is telling you that when you lower medication, you’re symptomatic…it’s a frustrating choice. I understand since I’ve put on some weight as well…
Topamax is one of the few meds for this that causes weight loss, so it’s a possibility. Also, you are on a low dose of Prop, so maybe you can go up even higher and stave off the symptoms? I think they said around 120mg is a starting point, and it sort of correlates with your weight…whatever you weigh is about the dose to expect. Even though you’re up 10 pounds, I"m going to guess you’re not 80 pounds lol…
Sorry you’re bummed out!~
Kelley

I think we need a migraine meds weight gain support group. Hello, my name is Victoria and I have gained almost 10 kilos in 18 months on Prothiaden. :frowning:

I did OK getting from 150mg to 125mg. Then, when I went from 125mg to 100mg the vertigo and other symptoms started coming back. I stuck it out for a week before going back up to 125mg and within 24 hours I was fine again. But, I tried again about three weeks ago and I’m happy to say that I’m now OK at 100mg. In a week or so I’ll try dropping even further, to 75mg. The bad news is there’s no weight loss yet but I expect it will take some time.

Vic

Thanks for the replies :slight_smile:
Kelley - that’s interesting about the correlation between propranolol dosage and weight…I didn’t know that. No, I don’t weigh 80 lb surprisingly enough, lol. I weigh 138 lb at the moment, but was up to 142 (10 st 2lb)over Christmas. I usually weigh 9 stone, give or take a couple of pounds. I know that doesn’t sound like a huge amount of gain, and I’m not short as I’m 5ft 7, but I have a really small build, and my trousers/jeans are all far too tight! Maybe I will speak to the doctor and see if she thinks increasing the prop further would help, but I have a bit of a feeling its the two drugs in combination that are helping.
Vic - yeah, we should have a support group. I would have to confess to doing sneaky things like eating healthy stuff at work all day, then sneaking into the shop on my way home and scoffing a big chocolate bar in my car. Or weighing myself in kilograms instead of stones and pounds, cos I don’t really know what kg weights mean, so I am in denial, lol. That’s interesting that you seem to be tolerating the drop in dosage now. My problem cutting down with pizotifen is that the dosages are small and it’s hard to break it down in stages like that. I have been on 1.5 mg, 1.0 and 0.5. I seem ok on 1.0, but going down to 0.5 seems to set me off again. I went back up to 1 mg again last night, but I don’t really feel better yet, but I think it’ll take a little longer for my system to adjust.
Really though, I think I would take the weight gain over the dizziness any day, as it’s not great, but it’s not limiting my life in the same way that my vertigo was. I’m really grateful to be at a stage where I don’t feel dreadful every day.

Yes! I agree with the support group! I gained 35 lbs on nortriptyline (5’7" also, from 132 lbs t0 178 lbs), but it gave me my life back, and really, when you are as sick as I was, I would have cut off an arm to feel better. Literally. I weaned off it very gradually, as I, like Victoria had problems coming off. I was done in December and just yesterday was weighed at the doctor to find I had lost my first 5 lbs, so it can happen.

One thing I said to myself when I was gaining weight is I can look great and be skinny and also housebound so no one can see me anyway or I can gain a few but be active and happy. Wasn’t much of a choice at that point. I have definitely gone through rough days and cried and thrown pants that no longer fit across the room :lol: though.