I wanted to tell you that I’m finally having some “great relief” from a medication called Prothiaden.
I’m not completely out of the woods (I still migraine) but in between the migraine I’m having rocking free days.
Prothiaden has allowed me to get up early every morning and go to the gym.
Which has changed the way I look at life, the gym has given me some desperately needed serotonin boosts.
I didn’t think I’d ever be active again due to Mav’s symptoms , this med has given me my life back and I pray it keeps working , as it’s been a long time since I’ve felt like doing anything but sleep.
I’m hoping this post helps someone.
Big hugs to you all
Thinking of you.
That’s fantastic. I just picked up a script for it today believe it or not. Any start up effects to know about? Anxiety?
Is sleep better?
start up probs , too hard to say Scott, as I was starting Proth during withdrawal from FEX.
I think it’s taken about a month to really kick in, insomnia was bad at first, but that could have been the FEX withdrawal.
hard to say what was what you know?
My sleep probs came from RLS and IBS, both these symptoms were nocked on the head by iron tabs.
I am now sleeping like a baby , I’ve never slept this well, this of cause is contributing to my recovery.
Before My mav diagnosis, I was on Prothiaden, had to go off it as it caused tachycardia.
But I do remember Prothiaden as being awsome for insomnia, once your asleep on this med, you’l normally sleep all the way thru.
Hope this helps you and best of luck with it Scott.
Let me know how you go.
Hi Jen, i see you answered Q whle i was writing last post…
oopps my previous post gone?
Was just saying glad to hear that has done the trick for you…
Scott good luck too…
I’m another member of the Prothiaden (aka Dothep) club. So happy it’s working so well for you. I’ve been on it about 18 months now and am at maximum dosage of 150mg. I’m about 90-95% well now most of the time. If things get hairy a little bit of Valium usually does the trick. I am a raging insomniac but I think Prothiaden has helped with that. I sleep more regularly now (which helps with the sleep schedule) and with less waking up during the night.
Side effects - I really wish I’d taken notes at the time I started Prothiaden, but I might try and trawl through earlier posts of mine on here to see if I wrote anything. At the beginning I seem to remember I had some pretty weird and vivid dreams, maybe even nightmares. I still occasionally have morning hallucinations - on waking my vision will be all broken up, like an old TV set picture and/or I’ll see giant spiders (daddy long legs) crawling over the walls. But it’s not scary and doesn’t last for long and is quite rare for me now. Jen I seem to remember you or maybe your Dad has had the same hallucinations? The worst side effects are weight gain - I’ve gained about 5-6 kilos since being on it. I also have reduced libido and in general seem to feel like I’m coasting through life a bit. But that could just be my mid life crisis kicking in :roll: .
Here in Sydney Dr Halmagyi uses Prothiaden as his drug of choice for MAV/chronic migraine. The good news is you can take it long term (my GP has had people on it for 20+ years) with no problem and, in Australia at least, it’s pretty cheap.
Due to the weight gain and mojo issues I’m considering tapering off - am apprehensive though as I’ve really got such good migraine control with it.
Once again Jen, I’m really stoked that you’re doing so well. You’ve had years and years of hell with this thing so it’s terrific you’ve found something which works for you.
Just wanted to chime in a big HOORAY for you Jen!!
Let’s pray it keeps on working and you get your life back!!
FANTASTIC new Jen! Really pleased that you are getting some relief. I am going to make an appointment with my GP to discuss prothiaden. I’m a bit wary of the weight gain thing (I put on weight with beta blockers FFS!!) but I am going to the gym regularly so hope I can keep it under control.
Vic do you know if the weight gain is because it makes you hungrier so you eat more (hey, we’re human and deprivation is so '50s LOL) or is it a biochemical thing independent of how much you eat or exercise? I did a bit of a google but the info was contradictory. I’m less worried about the mojo bit as I already have very little :lol:
Jen / Vic do you take it mornings or evenings? What’s your dose Jen?
I really don’t know what the deal is with weight gain on Prothiaden - what the mechanism is or if it’s really even ‘true’. My recollection is that the listed side effects don’t include weight gain but certainly, there’s a few of us here on mvertigo for whom that has been the case.
To be honest it’s really hard to pin down WHAT is going on - I started Prothiaden just a couple of months after a bad relationship breakdown - so was the loss of mojo/weight gain due to the relationship ending or the Prothiaden? It’s so hard to say. I was on Prothiaden 15 years ago (but intermittently, ie not every night and nowhere near current dosage) and was thin as a whip and in tip top form mojo-wise - despite being clinically depressed. So you know - who can say - I probably need a team of psychoanalysts and neurologists to sort that one out!
Snapping back into focus - I take Prothiaden at night time - 150mg.
I take 75mg at Night, as it makes me sleepy during the day.
Vic and Gabrielle,
I was on Prothiaden years ago with no wieght gain, after my cardiologist told me to get off of it, I had no chioce but to try other things.
I know about the mojo thingy all too well, fex did that to me and also made me gain way too much wieght.
I’m a bit of a hiefer right now , but it seems the Prothiaden has given me enough relief to get to the Gym and work out, so I’m real happy with that.
Motivation was seriously lacking for me while on fex, funny how we are all so different hey? all of us with the same bloody illness.
I wanted to wait until my monthlies before I jumped to conclusions about how well Proth was working, so far it’s out performed anything I’ve tried over the years, and has stuck even during my period, YA!!! :mrgreen:
I have noticed I’m more hungry.
Hey Kelly Thanks honey, Thanks ruby so happy!
Great news Jenny - that would be the big test time for me too - I’ve just finished a 7 day headache - I’m afraid I did resort to a few aspirins when it got really bad but hey a girl’s gotta work . I’ve been off the coffee (my only caffeine source) for a week now and have noticed no difference. But maybe that’s just confirmation bias 'cause I wasn’t expecting to as I only had 1 per day
I do find I’m generally better if I can get to the gym regularly - at least 4 times a week. Sadly I’m a fundamentally lazy person and would rather sit on my arse than move it, so that will always be a challenge :lol:
The individual variations with this charming condition are amazing - no wonder it can be so hard for people to pin it down, particularly when you don’t often get an actual headache
Hope you continue to do well Jen - must be such a relief to feel a bit “normal” again
Thanks for the dosage update Vic - of course now that you mentioned it I remember you had said this before - sorry. Blame the Meeeegraine brain :o . You’re right about figuring what’s what with this stuff - it’s a bit like asking how long is a piece of string…
I’ve just finished a 7 day headache
From caffeine withdrawal yes? That would be a good sign as according to Silver; you can expect your head to feel worse once you ditch the caffeine and painkillers over the first 2 weeks. Caffeine acts as a painkiller for some.
I don’t think so as it was just the “usual” 7 day headache I get Pre/during the monthly torture - it might have been a component I suppose but it didn’t seem to be significantly worse than I normally have to put up with.
Call me stubborn (you won’t be the first ) but can’t believe I would have a 7 day headache from going from 1 cup of coffee to no coffee. The last time I gave up coffee (about 14 months ago) again going from 1 cup to no cups I didn’t have a withdrawal (or any other headache) headache at all. The sensible thing of course would be not to have quit coffee until this week when that would be the only thing going on. Oh well.
But perversely I hope you are right and I am wrong cause I would LOVE it to be just coffee and painkillers I have to go without :lol: Will keep you posted - I’m on day 10 of no coffee/caffeine and day 3 of no painkillers.
How are you tracking? Must be about 2 weeks for you now?
Hey – I think I am in a better place since stopping painkillers. Aches and pains still come and go here and there but they don’t seem to be so bad and burn out on their own far more quickly unassisted. I find if I get my sleep sorted and stay on track (which I am bad with), and avoid the obvious trigger foods then I am pretty good on the pain front. The problem now though is Paxil withdrawal. Nasty but just trying to level off at about 1.5 mg before trying to trickle in Prothiaden.
So What I want to know is , what can we take for strong period pain??
Sometimes mine get so bad it makes me vomit, and I’ve almost fainted from the pain.
it only happens the first day of my period.
Sorry to the dudes TMI.
I have to say I downed 3 aspirins for mine - it was either that or rip out my innards. Easy choice really…I’ll never be a martyr :lol: Did Silver say you could take a few painkillers or was it now (sorry still haven’t listened to it yet)
most months I can get by with a wheat bag for the below waist symptoms - but I do work form home so no one to look at me strangely
Scott glad to hear that things seem to be improving - good luck with the Paxil withdrawal
I feel like I’m goona die sometimes.
my Pain tollerence is 0
I could faint after waxing :oops:
Yep Silver said none, not one
I’m sure I read somewhere recently that Naproxan (in Australia sold as Naprogesic) can be used for migraines. I’d never heard that before. It is a painkiller as ‘digesic’ is in the name so I guess that’s a big fat NO from Dr Silver.
Gabrielle and Jen, given that you both have such bad period pain have you had a thorough check up below decks? I was having HORRIFIC and painful periods for about a year (I won’t gross you all out with the details) before I was FINALLY sent for an ultra sound where they discovered a massive fibroid. I had that taken out et voila! I hardly have any period pain anymore.
Jenny- I used to get very bad cramps and would chomp down Advil (ibuprofen) for my first and sometimes second day of period. I had some blood work done, and found I was really low on progesterone. I took some bioidenticals for about a
year and my cramps went to zero. They have progesterone creams that work as well. AFter finding out that I have some other health issues that affect clotting, I was told not to take hormones, but that I could get an IUD that has progesterone
in it. Supposed to help with cramps and work for birth control as well…havent gotten the nerve to have it done yet…sounds like an OUCH to me!! but the progesterone therapy worked wonders.
HI Vic - ultrasound was aOK for me. Kelley thanks for the tip re progesterone - I think I’ll look into that