hi jen, after going cold turkey on peri i got the sensation of spinning in circles again badly, rockings back and had a headche for a week so far.Needless to say im back on it very low dose. it wasnt a cure but did take the rocking away but some spinning /headcahes still remained. i went to the chemist didnt get any real answer on vasco issue and peri, i wish they never found out about it, its just complicating things. anyway as you can guess i dont always follow advise, so along with the peri which ill probably up a bit,im running another experiment on myself im starting 5htp soon and 400mg b2 working up ,along with some super expensive mega multi that greg on this boards been taking. if none of that works with some tweaking here and there i probably end up back at the neuro. Are you still taking it also?
I know this thread is old but wondering if anyone was still on the Peri and how you are doing?
I started it this past week and I’m only on 1 milligram at night and having problems. I’m extremely sensitive to meds. I have dry mouth, I’m eating everything in sight, constantly tired and sleeping half the day away (I can live with all that if it has the chance to help) and if I try to get up at night after just having taking it, I’m so off balance I stumble in circles and into the wall and feel like I’m spinning (can’t live with that so much). This wears off somewhat by the time I get up. The doctor wants me on 2 mg. at night and 2 mg. in the morning and up from there, and it’s just making my dizziness worse so far. At this point I could never take it twice a day. Did any of you find the dizziness side effect let up after taking it for awhile? I’ll deal with being tired, I already am 24/7 anyway from the beta blocker I’m on and sleep apnea and brain fog etc. but the reason I’m taking it is to make the MAV better not worse. I do know I have to give things a fair shot. And at the dose I’m at, I doubt it’s going to do anything to help my MAV. I’m a little worried if it doesn’t work out that I’ll be sick coming off it. My daughter has been on it for 4 years and it greatly helps her migraines/MAV but when the doctor has tried to wean her off a few times she’s gotten VERY sick - migraines, vomiting, no appetite, vertigo.
Thanks for anyone who has input on this med. 
I actually didn’t know much of anything about this drug before yesterday. But, I saw my neurologist yesterday, and he decided to trial me on this medication. I’ve been through many failed trials. the fatigue I experience from this illness is tremendous, so I was a bit worried about something making me more tired. but, I am much more afraid of living like this (I am truly in hell) than trying this drug. I took my first 2mg last night, and it made me very sleepy after about 1 hour, but I just couldn’t fall asleep. sleeping has been a problem for me for the past few months. I am so darn dizzy which makes it so hard to fall asleep. I also had to go to bathroom and was dizzier than even usual because of added sedation. but, I did want to add, that my doctor said that he plans on giving me the full dose ONLY at night. I think I will work up to at least 8mg, probably more. He didn’t see a reason in having to take it during day. I, too, wouldn’t be able to tolerate it. any good, hopeful, stories, about periactin would be MUCH appreciated. After nearly 5 years of nonstop 24/7 rocking, spinnign sensation in my head( reeved up/swimmy feeling), I just cannot imagine getting well. I need some hope, but it’s hard. so, any hopeful periactin stories would be MUCH appreicated. I read about a woman named, jen, who got better on it. I love such stories. I need them to go on and keep on trying.
Lisa, we can talk as we go along if you want, with the Periactin. I’ve been this way for 8 years and I’m hopeful this will help me too. You can PM me through here and if you have any type of messenger or want to communicate by email, let me know. Sometimes it’s very helpful to have someone talk to you as you’re trying new things, just to keep you going.
Good luck to you Shelley! I really hope this med helps you and Lisa. It sounds like a very promising medication. I wonder why it is not prescribed more. I wish you both all the best with it!
Thank you so much Elisha! I have been to countless neurologists and none of them mentioned this until the one I’m going to now in Boston. I guess it’s used more for children, but I have read on here and elsewhere that for other doctors, it’s their go-to med. I would think it would be first line because of the low side effect profile! I’m hoping because I brought it up and I’m on it with my doctor, maybe she will give it to others too.
Shelly,
I’m so sorry you’ve been sick for years as well, and hope so much this drug works for us. What are your symptoms, btw? Feel free to PM me as well.
I asked my doctor why periactin isn’t his first-line treatment, and he said because major side effect is weight gain. I just want my life back regardless of side effects. I not only want but desperately NEED my life back!
Hi again, I sent you a PM with my issues, there are so many! I have basilar migraine and I have every symptom of it plus some. My attacks are chronic either very long lasting or right on top of each other. I don’t ever have a “good day”. Haven’t felt normal in over 8 years.
Honestly if I ever got better I don’t know what I’d do. I haven’t been able to attend many family functions, go out, work outside my house, drive, ride in a car other than when I HAVE to… for years. I’ve gotten so ill from the vertigo I’ve lost 20 pounds and not eaten in 6 weeks. I had to be going to my doctor’s office almost every day for an IV bag. It’s been awful so I like to come here and ask for support and advice because on the outside I may look normal… or well sort of if you don’t count the walker and the drunken lurching. 
Sometimes others don’t understand.
I can relate to so much of what you wrote. I sent you a PM and will write more this weekend. so hard to sit in bed with laptop right now. I hope so very much that this drug helps you. i’m so sorry you’re suffering.
Good luck to you both! I have an appointment in a few weeks and I was all ready to demand neurontin. What happened with your trial LIsa? Did it make you dizzier as my doctor has insisted in the past it would? Maybe I should ask for Periactin. So confused. I hope you both become success stories real soon!
Christine
I was offered Neurontin but I heard it could make the dizziness worse, awful brain fog, and I read a few accounts on AskAPatient (don’t read there if you don’t want to be terrified) that it ruined people’s balance that didn’t have any issues to begin with. My neurologist only wanted me to try 100 mg. a night and move up VERY slowly from there if I even needed more than that. She said it was a safe med, she has a 93 year old woman that takes 100 mg. a night and is totally fine on that dose and it helped her migraines. I think as with everything else, it depends on the person and how your body manages each med.
I tried the Periactin first because I read and heard from the doctor too that is a very safe medication, very old, and used often even in children. It’s an antihistamine and is used for allergies too. I felt between the two that my safer bet was the Periactin. I think if you start very slow, 1 or 2 mg. at night and stay there until you feel you have adjusted and move up very slow from there, it’s worth a shot. I react very strongly to almost everything, I’m super sensitive (my neurologist explained “the migraine brain” is very sensitive) and I’ve managed 1 mg. a night for 5 days now. The only issue is the dizziness but if you take it at bed time, by the time you get up, hopefully the worst of the dizziness will have passed (if it even causes you to be dizzier at all, it might not). I find the first 6 hours or so afterwards is the worst. The half life of the medication is fairly short so even if it affects you badly, it shouldn’t even cause issues that whole day.
Good luck whatever path you choose. Hope you both find something that works as well! We’re all in the same (rocking) boat. Okay, bad joke there. Sometimes you have to laugh. 
Hi Shelly,
Just a quick question. If you only take the periactin at night and it has such a short half life, how does it help during the day if most of it is out of your system? My neurologist is big on half lives so I want to have something to respond to if he tells me this. In fact during my first appointment he gave me a whole lecture on how they work. I didn’t completely understand it at that time, but I spent some time reading about it and now I think I have a better handle on this concept.
Good luck with this med and please keep us posted. Hopefully I can get my hands on something to try soon.
Christine
The short half life is why my neuro wanted me to take it twice a day. Some people take it just at bed time and some multiple times a day. My daughter took it for 3 years at bed time only and it helped her. It might be something about the way it affects your serotonin and how long it takes for those levels to get back higher if that makes sense? I really don’t know, that’s just my guess. I just know if you google (and from my personal experience) you can use 1 daily dose and it does work for some while others need more times a day, like my daughter had to start it twice a day recently and she’s doing great. She has increased appetite, weight gain (but she was tiny to begin with so it’s fine), tiredness which she said went away after a week or two, and she gets dizzy spells but they are not as bad as the vertigo she was getting from the migraines themselves. She only gets one migraine every couple of months now where before the Peri, it was 4 times or more a week.
Christine,
It did make me dizzier. Over period of about 2 months I developed a new type of dizziness (hard to describe) that kept on getting worse and worse. My doctor advised me to stop after a few months. He did, agree, that some get better but there are some who feel more dizzy on it.
I forgot to take the Peri last night before bed and the weird dizziness/loss of balance feeling wasn’t there today so it’s definitely from the medication. I’m hoping it passes over time though. I have an AWFUL migraine today though. Don’t know if it’s just coincidence of because I forgot to take it. I guess I’ll keep on the baby dose at bed time and hope for the best…
Lisa and Shelly,
Thanks for all the info. It just seems like there is no way to judge how a med will react unitl I try it myself. I just wish my doctor wasn’t so adament about certain drugs.
I am sorry the neurontin didn’t work for you as it has for some others on the forum.
I look forward to hearing some good news from you both about the Periactin. I am going to ask my doctor about this med too as we never ever discussed this one. Maybe he will be more receptive to my trying it.
Christine
Christine,
Thank you. all the best to you
I looked up vasoconstriction medications and it says antihistamines are vasoconstrictors. Periactin is an antihistamine. Can you call a pharmacy? My local pharmacy (CVS, Target, Walmart etc.) will answer any questions even if you don’t fill your scripts there. They don’t ask for a name. You can call anywhere a pharmacy is open and ask to speak to the pharmacist.