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Update on pitzotifen


#36

Like a few of our fellow sufferers on here i have almost 24/7 daily symptoms and cant even begin to pick out triggers…all i know is the ONLY trigger i dont have is lying down resting…so if i lie still for the rest of my life i will never be ill1😀
Im still having good headache and neck pain free days…i csn go 10 days at a time without having to take rescue meds to thr Botox is helping…just need that xtra bit of help. I think reducing my hours may have to be next on my list
Jo x


#37

Go for it Jo! @Onandon03 is right. If work is a trigger you need to stop or cut down. I was so luck that Dr S told me to rest, do the diet, take the pills and avoid aerobic exercise as it gave me permission to look after myself and forget about work for 5 months. I think if I hadn’t been improving Dr S would have signed me off for longer. Jan


#38

That’s great Helen. Jan x


#39

Well ive already had ALOT of time off Jan 6 months plus dozens of early finishes and sent home unwell…ive used chunks of annual leavre and my flexi is maxed out!!! None of that time away from work has put me anywhere near 100%. Idealy i would like to be retired on ill health but its extremely hard to get that…plus im only 53 and still have commitments financialy. But i know health come 1st…always.
Jo x


#40

I think what MAV needs is a consolidated chunk of ‘time out’, away from triggers. Once it’s got a grip a couple of weeks here and there is nothing. I don’t see why if Dr S can sign @Janb off for long enough for her to adapt to the drugs and for the drugs to really take effect and give her a baseline to work from why your hospital neurologist can’t follow suit. You are too young to go out on health grounds. You’d be bored to death in a while once recovered, You could so easily go back once you are better. It would be easy.
You need time out for the treatment to take effect. That wouldn’t be a problem if you were undergoing Chemo. Helen


#41

Every word you say makes sense and is 100% true for me. My partner is so supportive and wants me to do whatever it takes to get well…including taking sick leave. I think he and yourself are so right. Thanks Helen
Jo x


#42

Yes, Winnie the Pooh was a family film for us, but still made me all tear up… Yeah, I’m doing better each week. I’m probably near the 80% recovered mark I think.


#43

So interesting about the trigger avoidance , I have had this since I was 13 although episodically and less life altering BUT I had no food triggers or light / movement triggers before I find it odd how now at 30 it’s all changed . Is that common to have no triggers and then suddenly develop them ? Did you have the same triggers when in episodes as opposed to 247?


#44

You should of seen me driving to the cinema I was smiling with tears because I could look at the car lights :slight_smile: and that’s amazing news ! How long have you had mav for now ? So happy to hear verapamil is doing it’s thing


#45

MAV is getting near 2 years for me. First year didn’t even know what it was. Knowing is half the battle!


#46

Totally agree honestly I try to raise so much awareness def think more needs to be out there


#47

What’s He like shopping in Tescos? I know he’s good with pegging the wash out, so’s mine. ‘Sick leave’. Go for it. Like me, you’ve been through the wringer with this one, there’s no point suffering pill side effects to get it under control, and keep throwing triggers at it to wind it up again. You need to get away from them for a while. Might not be too long. @janb doing OK, she’s not been out long. Your health must come first. Don’t let them make you quit, just put work on hold awhile. Give the drugs a fair chance. Helen


#48

Yes…he does goes to tesco!! Ha ha. Long before i even wake up on a Saturday morning. Think im gonna knock decaf tea on the head and stick to water( i LOVE tea😢) take whatever meds my neuro comes back with and make a decision about work. I feel not too bad today…dare i say that?
Jo x


#49

I think there are always triggers, bound to be. It’s just we don’t always notice them. Youngsters and perhaps people who have episodic attacks, maybe it doesn’t seem so important because it quite quickly passes, we aren’t ‘migraine’ clued up (I certainly wasn’t because I was much older than you are now before I even found out it was migraine anyway). Besides triggers can be difficult to spot, cumulative, often (in my case at least seemingly) delayed - by days sometimes, triggers bit elusive maybe.

Maybe I was just a bit dense but actually I must have had 6 or 7 episodic attacks following meals out in restaurants before I made some vague connection. Was it the lights, ir the food but then still I had no idea it was migraine. I did wonder as I had been told it was BPPV, crystals in my ears, how could eating out, bring on a dizzy attack.

I guess so. Who knows. It’s virtually impossible to identify triggers if you have 24/7 symptoms anyway I think. Leastways I’ve not yet found a way but very open to suggestions from anyone who has worked that one out, pls,

I suspect one develops more triggers maybe as the system becomes more hypersensitive when it moves from episodic to 24/7 chronic although I can’t say I noticed them even then. I remember my episodic attacks were totally self contained, no breakthroughs between at all for a decade, then I suddenly started getting weird balance related symptoms between attacks for several years before a major atrack which left me chronic.

If none of the above makes much sense pls to bear in mind. I first suffered ‘sick’ headaches as a teen, once read in a Sunday paper that chocolate could cause this, and, age 13 stopped eating any chocolate, totally and for ever. Still stands. And the sick headaches stopped, The episodic attacks I suffered years later were solely vertigo, not headache, ear pressure, photophobia -not for many years. ‘Just’ vertigo; Totally incapacitating, unable to open eyes or move, fast room spinning vertigo that lasted days, appeared to come from nowhere, and go the same, but there were triggers. Somethjng must have caused it. It has to come from somewhere. Helen


#50

Oh, he sounds just like mine. Something else we have in common. How about trying the John Hopkins diet? That’s the same as the one Jessyka posted in that thread about Laura Kossack too? Helen


#51

Im going to try everything!!! Im still sitting waiting for a response about slotting in a new med…and im making an appointment about the HRT patch. I think i bury my head in the sand and “carry on” this cant go on…its not working Helen
Jo.x


#52

Just hope you hv more luck with yr neuro than me. I emailed mine three weeks ago, no reply. Helen


#53

Thanks so much Helen you make many very valuable points . I probably wasn’t fussed what caused what when I was younger however I remember leaving a night club once and having an attack’s . Now I think noise lights it’s obvious what caused it . I didn’t even think of that until you just replied . :slight_smile: so thank you .

Oddly tho back then my phone light was fine so was driving and shops. It’s so difficult when it’s 247 I’ve given up searching . I just avoid the 6 cs and try my best to rest here’s hoping the pitz does the rest :slight_smile:


#54

I am drinking quite a lot of decaf tea and coffee - I am not good drinking just water unless it is heatwave conditions. I try to switch to herbal teas - trouble is they have all got lemon in them whatever the flavours. I am having a spot of ear trouble this weekend - nothing too debilitating just annoying pressure especially in my left ear. I am wondering if it is the change in pressure (migraineX alert) or perhaps I am still doing too much. Either that or too much decaf! Lol. Jan x


#55

I’ve had a bit of a flare up this week …

Time to go shopping! Get some Rooibos :slight_smile:

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UK caffeine-free teas