Hi every one,
So I’ve been on Periactin for many months and I’m happy with how it’s working.
I do have some S/E that are annoying: weight gain/lethargy/motivation/and I have also felt quite deeply depressed at times.
In other words as some would say, I’ve lost my mojo.
I know that sounds strange (how can I feel better and not feel over the moon about it)
I knew Periactin lowers serotonin, so no surprise there.
I’m still waiting for the S/E to go away, if they don’t go away (which I doubt they will) I figure that would have already happened after this many months.
I’ll have to review my dose, maybe 2 tabs a day instead of 3.
On the upside, It’s doing its job for my MAV attacks, It’s reduced the anxiety that happens during in the aura phase.
For me , it feels a little like being on a low dose Effexor.
P/s I’ve put on 5 kg since starting this meds, not happy!
I hope those who are trying Peri , have an easier time with side effects, maybe it’s just me?
there’s always something isnt there?
Sorry for the Crap side effects. Hopefully over a little more time your brain will adapt better.
I’ve been on Peri since July 19th and 16mg. after the first 2 weeks. The side effects are gone for me. I haven’t noticed a whole lot of weight gain and the tiredness I got from it is now gone. On the other hand, the dizziness is still sticking around, but last week the dizziness is on this strange path to where I’m hoping it’s straightening itself out. There have been short moments throughout the day that I am actually not having to focus on my balance-basically I’m normal like I used to be for a short minute or so. On the hand, I have noticed some pretty rough parts of the day-more rough than before I started peri. But most of my day I’m at baseline-still stuck with constant disequalibrium.
I’m not sure if this is a sign of better things to come or what, but I’m going to stay at 16 mg. for 4 more weeks to see what happens. I would say that I have to see more improvement to call this a success. At times i want to just dump it and move on. Then I look at the calender and realize that I haven’t been on it nearly long enough to claim one way or the other yet. So I’m waiting patiently and still hoping.
Greg,
Sorry to hear it hasn’t been a fast result, as it was for me.
I did feel as if my balance was a little off, not the rocking per say, just balance issues.
The peri does help me not focus on the migraine and symptoms, that’s a pretty big deal for me, you know… Getting on with life ect:
Good to hear your S/E have been ok.
Seems everyone is so different with meds, some meds work quick for me only to conk out quick, other meds take time to help…
I just thought I’d post, not to be miserable, but in hopes that it might help someone else.
Yes that is exactly how I’m feeling right now. Not so much rocking, but my balance is quite off more than normal. It feels as if I could lose it at any given second and collapse on the floor. It hasn’t happened yet but as the days go on like this, I’m kind of expecting it to. I hope not. I feel like I have less control now. I feel like this med is on its way to failure. I’m still on it now, but my mind changes throughout the day about it.
I have not heard from Muppo lately. Maybe she’s doing pretty good. I’m sure we’ll hear from her shortly.
hey jen, ive been on it for awhile too only 4 at night i have to increase,( i always forget in mornings then at night realise oops better take one)so far hasnt really done anything for the spins/balance/headaches but i dont rock so much, maybe its just time or the peri who knows, i happy to take it b/cause i dont have anyside effects, the triedness has worn off but im stacking the weight on too and eating like a hippo, im not known for my self control!! think i have to get to at least 12mg before i can yeah or no- thanks for updating us im still holding out hope coming into 3rd year!
Heres how I think of it - if we are feeling well enough from a med that we are concerned about weight gain that means weve pretty much got our lives back. When I was in the pit of MAV hell I couldn`t have given two shits what size I was.
Hi Greg , Yes I know that feeling well, I had a nightmare few months on another med, it put me in hospital every couple of days with after collapsing in my home.
I’d been trying to get to the therapeutic dose and I took it too far for my system (that was my Mav crash!) I also lost the plot for a while there.
My own fault stupid!
If I’d stuck with the very first dose,( which did work ) it may have helped me, but I took it way too high.
I’m sorry your having these issue’s maybe it’s not the med for you, I know we hate this saying (we are people with the same illness and yet we are all so different as well) so true.
Bec, I use a pill holder, and put it where I can see it every day, Kitchen?
It’s easy with brain fog and confusion of mav symptoms to forget things.
The amount of brain energy it takes navigating our own homes while rocking I believe our brains go into overload!
I wish you well with the trial.
4 pills a day is the max we should go to , it’s I believe dangerous to push it any higher.
I was taking 3 to 4 pills a day; I’m now only taking 2 pills.
Victoria,
Yes I have gained too much weight in 4 months , I also have high blood pressure which I take pills for and high cholesterol , the weight and food cravings aren’t the reason for revising my dose, it’s the other S/E of depression that have been a real issue for me.
Can some meds give you depression, make you stressed or crackers! Yes and with the amount of drug trails we have been on I’m sure you would have seen this type of things happening before during your time on this board… No?
Geesh , I’ve heard of people going off a (working med) due to their sex life diminishing.
Ilovesalem,
thanks and yes If my migraines were gone and I was in remission 100% I’d be over the moon ,the migraines are still loooming in thew background, I still have bad days regardless of the progress I’ve made.
Best Jen
It sux doesnt it? Theres always something with these meds. Im really sorry the SE are getting too much for you. I know that flatfeeling. I had it with Prothiaden. Just sort of sucked the zing out of life. Mysolution was to very very very slowly get off it and hope for remission - which Im very lucky happened.
I’m really glad you have found something that helps your dizziness, but it’s a shame about the side effects Although worrying about weight gain and feeling flat is much less bad than dealing with severe dizziness or vertigo, as they are things that you can manage to put up with, whereas being unable to walk/stand/sit (as I was at some points) is really not a way to have to live. But of course in an ideal world we would get the benefits from the medication with no unpleasant side effects.
I took pizotifen which is similar to periactin, and also had issues with weight gain and tiredness (though not with feeling low/depressed). But once I was well enough to be thinking about my weight I did cut down the tablets very slowly and eventually stopped altogether and have remained in remission. Very similar to Vic really, so maybe if you could stick them out for a bit longer and put up with the side effects you’ll be able to wean yourself off them gradually and find you still feel better? I hope so. My weight has also slowly reduced and I’m back to my normal size (yay!).
I’m ok - thank you so much for asking! I’m on 8mg a night of the Peri. I feel it has helped - my night rocking has dulled down to about 3% which is great since when I first got sick, I was backflipping off the bed Exorcist stylee!!!
The Nori has helped massively too. I’m back working 3 days a week, albeit in a very reduced role/capacity. I’m going to push up to the 75mg dose of Nori that Dr S wants and then I might increase the Peri to 16mg split dose.
My head still spazes out (although hopefully I’m not tempting fate but if what little memory I have left serves me well), I actually dont think I’ve had one of my brain zaps/electricution shocks since taking the Peri!!
I mean, in the past I’ve managed to clear 7 weeks at one count before the zaps started up again, so I know it could hit me at any time, but for now I’m loving that it has been ages since I’ve had to endure one.
Jen - you are a total inspiration to me. When I first read your story of how long you’ve been suffering and tried so many drugs, without relief, it used to literally frighten the life out of me. And look where we are now. It gives me a warm feeling inside knowing that for the first time in 2 decades, you are truly finding some relief. And long may it continue.
Everyone on the Peri - good luck and keep fighting the fight!!
Hey Muppo and Bec
It’s great to hear you’re getting some relief guys, it might be the combination of the two meds Muppo…, let’s hope down the track it might get even better.
I’m a bit annoyed at myself that I bothered to mention “the weight gain” now, as it’s really not my main concern, it’s a pain in my “large butt” so I need to try and take control of my eating.
I’m one of the lucky ones here who’s partner has stuck with me and been “most of the time” pretty dam supportive.
As Mav’ers ,
We know how Hard it is on our families especially our partners in life, at times I’ve worried over the years that he will just end up hating the site of me,our sex life has been in a mess!
Between the meds and daily rocking and generally feeling like I wanted to "not be here anymore” my Drive to keep others happy has gone.
The other night my partner Mike reminded me of how outgoing I used to be, I enjoyed the company of others, that’s all gone.
I tend to hide away when I’m feeling depressed, God I hate being a whinger!
Over the years I’ve been too sick on a daily basis to be able to keep up the facade of a happy caring person, sorry to go on …But I love my hubby too much to put him through this forever.
I also get cranky at people for no reason sometimes now and I hate that about myself, I need to suck it up! And get on with trying enjoying what peri and prothiaden has given me.
Muppo maybe your right, Time will tell and I might have another remission, I think I’ve forgotten what it feels like to be normal, you know?
Does anybody know how Dr Lisa is doing? I know she was pretty much bed ridden.
Hope she’s ok.
i hate how this “disease” has ruined our lives. it breaks my heart reading this about you jen because i know this is true about me…not being as enthusiastic and happy about life, things being more of an effort-it’s horrible. i want to be the happy person i use to be but we must give ourselves credit! we are going through A LOT!!!
i guess knowing that this isn’t life-threatening and isn’t going to “kill-us” should make us happy. i would take this diagnosis over cancer any day. that should make us all smile? i’m all SO grateful for all of you as well! i seriously don’t know what i’d do without you all as well!
Ilovesalem, so true it’s a matter of perpective and there is always someone out there who has it much worse.
I need to pull my socks up and suck it up.
Somtimes I just lose the plot over how long it’s been.
I’m sorry you have similar issues, it’s frightening to think we might lose the ones we love through illness.
jen you maybe best placed to answer my question is peri a vascoconstrictor? i just found out i cant have them and forgot to ask about peri, my thinking is that it is, can you confirm? just like to know as i wont be back to dr for awhile. cant seem to get the answer from google.
I wouldnt be the best person to ask such a question , If I were you I’d call my local chemist and ask him/her.
From what I have read no Peri isnt a vassoconstricter, it works more like a blood pressure med on the viens smoothing out the vessels, they wouldnt be used for migriane if they were a vassoconstrictor.
as I’ve said I’m not a Dr or a chemist.
I don’t know Jen - I think you can allow yourself the recognition that MAV sucks and has had a huge effect on your life. Especially with us, we all understand. Thinking of you. X
thanks i will check with the chemist just thought someone might know,sandramigraine(ive tried that) is a v/c so i thought peri might b 2, its not a prob as i have more than likely had this for blood vessel issue for 30+yrs not knowing, like the dr said they look for 1 thing and find another which i wasnt in there for the first place. oh just a note when looking up peri found its sometimes used for anorexia no wonder im gaining the kgs, its not my chocy/food addiction haha… Ps Ive taken heaps of vascoconstrictors for migraine in past??
just a quick note dont go cold turkey on the peri like me, its not flash! dumb i know, live and learn…oh boy this vertigo so much fun :twisted: isnt it
Hi All,
Bec what happened when you went cold turkey,
So the periacton didnt help you, that’s a shme it’s helped with my symptoms and also cut the migraine down, I have about 1/2 the migraines I use to have and between the migrianes I don’t rock.
It hasnt stopped the altered Consciousness which is a big dramam for me.
Jeez , I’m sorry it didnt work for you.
In the past I’ve had no troubles slowly titrating off benzo’s, I had no idea someone would have to go slow on an antihistamine, hmmmm scarey!
Yes vertigo Mav Sucks! big time.
