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Amy on Pitzotifen


#43

@Onandon03 well, otherwise i would say i am at 10% symptoms free but i am functioning at my 80% regular (working, cooking, cleaning, etc).
and i would say yes, effexor has taken care of visual vertigo (big stores discomfort fie example), walking on cotton feeling (most of the time), ear fullness/ pain/pressure. And rocking is going down, still 90% of the time, but i can do all my activities. No light sensitivity and some noise sensitivity. In the mdds scale i would be 1 or 2 in out of 10 (Given functionality).


#44

Seems like you’ve got rid of more than 10% of your symptoms to me. It seems to have cleared up quite alot of symptoms for you. Bet you are delighted. I think rocking does tend to hang around longer quite often. Sorry to hear you’ve a virus presently. Alot of them about. I’ve had a heavy cold for six days now and it begun to affect my MAV symptoms now. Thought I’d get away with it balance was so good first few days but then it kicked in. Stuffy nose affects balance although I’m still functioning at home totally as usual, except no long walks. Had to take one day in bed I felt rough with it but that was cold not MAV. The time of the year I expect. All those bugs around. Glad things are going well for you really. Helen


#45

So confused think I replied to this on another thread ?:woman_facepalming:t2:


#46

Thanks so much James that’s helpful it’s more the rocking feeling and being in busy places I’m finding most difficult atm . But I am desperate for a holiday ! After a year of this crap!


#47

Thanks lovely @dizzy3 so sorry you’ve had a virus hope it’s clearing a little . I don’t ever expect to be symtoms free but I base my % on the fact I am still limited to a decent amount of things. I can’t do busy places and walking outside is still hard if this goes down or away I would say I’m more 75% there . When I was a kid the rocking persisted for months on end it did eventually leave me but popped up from time to time . Atm however it’s more like the titanic than calm waters hence why I want to try s low dose of ami. If that clears it whitin days again il be elevated ! :slight_smile: as for the airport I’m building up all my courage to do this trip il b on my own so adds to the nerves !:grimacing:


#48

Yes I have like I said above for me I am still limited to things before pitz I couldn’t drive at night I still can’t for very long but can actually see at night . I can’t yet walk in to supermarkets or busy places and my balance outside on the street is pretty bad . So I think if these things lessened I would be more my 70% self . However there a point I was in bed for months on end so I am greatful I am not there anymore !! Hopefully dr s can shed some light when I see him next .


#49

@Amylouise oh I understand the titanic feeling! I felt like that for weeks, it was awful. Mine is now like a pond with ocassinal wind, sometimes rough, but calms down again. We should create a scale base on that analogy!

@Onandon03 you are right, it has cleared symptoms, i forgot tinnitus, just remembered it because I woke up with it, and head pressure, because I had it last night (i think is all part of the viral infection). The thing is that the rocking is the most annoying, particularly when I am
working or eating. I am glad you are doing well, despite th flu. The season is coming!! ugh


#50

Figured I would write this , in this thread as @gidlabu pitzotifen diaries have helped me soooo much !

I took a break from this site while away as neeeded to clear my head for a bit and do a bit of living , something I haven’t done over the last 11 months .

Well where do i start I flew to Los Angeles from london over 2 and a half weeks ago I’m also still here :slight_smile: but thought an update is in order .

I firstly want to say for anyone scared to fly ,I am not recovered yet and very symptomatic and the actual flight itself was fine , Infact it’s the most normal I’ve felt in a long time! The airport was not great but I got through it , I am lucky I flew business so I simply got assistance and didn’t have to do much . I highly recommend this to anyone with chronic mav and travelling ! Assistance takes a lot of pressure of us dizzy people !

So all in all the travel side was fine , things I took were ear planes , nasal spray and lots of Valium thanks to the recommendation of you guys :slight_smile:

The bad news , coming off the flight, that night I felt my normal baseline BUT the day after the flight boy did I crash , not sure if it was jet lag , lack of water or what but I had a massive mav attack these pretty much continued for 7-10 days to be totally fair to myself I was doing ALOT more over here , car journeys , going out more ect so I guess In hindsight I should of expected to feel crummy but it’s the worst I’ve felt since June so it was a shock. I decdided to up my pitzotifen to try to stop the attacks going from 2mg to 2.5mg this seems to have kept me at my baseline of 50% most days so it seems to have worked . When I was crashing I’d say I was at 20%.

I have done so much more while abroad , I did a 2 hour car journey to Palm Springs , I’ve done countless hour car journeys to restaurants with family some I felt crap but some I managed ok, so overall I have seen progress . I still have the constant dream like sensation which is by far my worst symptom ! Huge light sensitivity and the normal rocking rubbish…I also have bad visual snow , I think I am very similar to @gidlabu that although the pitz has done something I’m still having a lot of bad days and no where near normal ! So I am due to see dr s when I’m back and I’m pretty sure he’ll be adding another medication in! :grimacing: please god that gets me to 90%! :pray:t3:

I am due to fly back in a week which I’m still nervous about but I have to say if you can fly business it makes a massive difference becaus lying down relieves dizziness for me and the movement of the plane means you can’t really feel the rocking ! I’ve cried a few times on this trip missing the old amy but my bf keeps reminding me of the huge progress I’ve made since this started and he is right ! I need to try to be more patient but as you know it’s so hard when you long to feel well!

For those of you who are starting this journey , my heart breaks because I relate to your posts so much. The suicidal thoughts , the hopelessness , the pure desperation to just feel normal believe me I spent 6 months bed bound with this crap ! Although I’m not fully recovered yet please take comfort in the fact that I’ve been where you are and just flew half way across the country something I never dreamed possible 10 months ago or even 5 months ago. I hope to keep updating in this thread in the hope it helps anyone going through this rubbish!

I also want to say ALOT of people who recover do not come back and visit these boards that’s a fact ! Mostly because they want to forget this nightmare ever happened and I don’t blame them ! So don’t be disheartened by the lack of recovery stories I assure I’ve seen lots !

I hope everyone is well and a huge thank you to all of you who contribute to this site I don’t know where I would be without it ! :slight_smile:

Right now I’m off to enjoy some sun before my return to rainy England !

A


#51

Wow, Amy great update! Reminds me of two trips I went on. One to Tennesse and then one recently to Calgary (6 months apart). They were like night and day. My Tennesse trip was very similar to the one you just described, doing the best to have fun but feeling awful… My Calgary one was much more pleasurable (although still dreamy…). I bet in another 6 months you will notice large improvements. That’s why I think its so good to get out on these monumental trips every so often because you can really see the difference. Well done!


#52

Great stuff Amy - it sounds like you are having a fab time despite the MAV ups and downs. I am so glad the plane journey was okay but sorry that you had to go through a bad attack once you were there. I think you are very brave and it has given me the confidence to consider a holiday abroad next year. My sister in law has ear issue - her labyrinth is shot on one side so she had to have a stick especially when she is in unfamiliar surroundings. When she travels by air she generally needs a wheelchair at the other end but it doesn’t stop her from travelling - another brave lady!
Enjoy the rest of your trip - it is raining here again today so make the most of it out there! :blush: Xx


#53

Hi Amy

Great that you made it; Shame that the symptoms kicked off. But you know flying 11 hours to a very different time zone can make healthy people feel like crap, so add MAV to jet lag, stress etc, and you’ve done really well. And you did it! And you’ll get back in one piece and it will give you some confidence back that you can actually get on with life, even if you do feel rubbish sometimes or a lot of the time.
Congratulations on being brave enough to do it.
Hope Dr S has done words of wisdom - and maybe you’ll need a double med to get the rest of the way. It’s helped me a lot.


#54

Thanks for the reply :slight_smile: Eric I definatley underestimated how much the travel would screw me ! BUT no regrets coming I extended my trip so Total of a month off work and daily life has made a big difference I am not so focused on my symptoms out here and I’m actually doing so much more yesterday managed an aquarium / a mall then an outside market ! These are things I wouldn’t dream of doing 6 months ago! This illness is a slow burner and progress is so slow you hardly see it but I do believe it’s there :slight_smile:


#55

Honestly even tho I had an iffy week it was the best decision I have made even extended for another week! :slight_smile: dreading the thought of the cold right now ! Ah jan definatley book it! Life is so short you have to sometimes just roll with the punches !

I’m due to see dr c when I land home so I’m interested in what he adds next which hopefully gets me further in to recovery :slight_smile: I hope ur feeling well and enjoying some times off over the Xmas period x


#56

Thanks so much Gideon! Yeah it was sucky BUT I did it and I’ve done soooo much more out here than back home , lots of car journeys , malls , aquariums and I’ve handled it pretty well ! There’s definatley progress just think like you I’m half way so need a bit more of a push! Will see what doctor s suggests I think he’ll add gaba tbh.

Also huge thanks for ur pitz diaries it’s helped me a lot and I’m sure many others starting their mav journey will also find it helpful :slight_smile:


#57

I think so too i have my Dr.S flowchart it says gabapentin next along with pizo. If that does not work he will then try pregabalin and after that is topomax.

Amy you doing great even with symptoms.I saw your workout video from Cal , super inspiring.


#58

Yeah I think so too I swear I’ve researched so much I almost know what he’s going to say lol! Ah that’s @GetBetter that really means a lot ! I love training and I 100% it has helped me ! can’t run just yet without triggering attacks but il get there :slight_smile:


#59

Not sure I’ve seen that. Is it much different to Hain’s?


#60

Strange that, Amy. I was researching gabapentin for Natty really and came across alot telating to eyes, and wondered, presuming yr consultant knows yr Moorfields history, why he hasn’t had you try that one sooner. I reckon it might prove your silver bullet. When you see him, mind, don’t lead him, see what he comes up with first. Let him earn that money! Helen


#61

Really is gaba mean to be good for visual issues ? He def knew my history but said my lazy eye had no part to play ! I agree I’ll keep quiet first and see what he says lord knows he must make a fortune out of us dizzy folk!
A


#62

I kind of drew the chart myself following how he treats all his patients :slight_smile: