Am frustrated and depressed. I had been doing really well for the past year–had gotten down to 12.5mg of Amitriptiline,am still taking Verapamil 240mg. Started having bits of problems here and there the last couple of months.Got a full blown attack where I threw up for 12 hours.Was one of the worst I have ever had.
Went back up to 25 mg of the Ami on my own.Still not doing it,contacted neuro through email this week and he told me to add 120mg of the Verapamil to the mix.So now I am on 360 and I’m still not right.Have been on this 4 days.First day felt great could feel the difference–now I’m feeling the changes in BP and almost went into a spin today.Just feeling very off kind of on the verge feeling.He didn’t say to go back up on the ami but that is what I think I might have to do–or should i wait until the BP increase has kicked in? How long should I give it?
I wonder if anyone else has done this–gone off their meds and then gone back on? I guess I am fearful that they won’t work again, I guess I should give it a bit more time,the thing is I was so liking not taking as much medication.The weight gain alone is enough to make me depressed as I have just gotten about all the old gain off.
It’s so frustrating when you almost have your life back and then get kicked in the teeth again.This condition sucks big time.
Hi. If it was only the ami that you had reduced and not the Verapamil then I would be tempted if I were you to increase the ami rather than the Verap. I am not sure why your neuro told you to increase the Verap. I would go back on the combo that had you feeling great x
Hi,
I hate to say this, but I have seen many circumstances where someone was doing well on their meds, decided to get off…felt crappy and decided to go back on, ONLY to have the meds not work the next go around.
I wish I knew why it was, but I don’t know. I wonder if, in your case, you switched to Nortriptyline It is just different enough that it might kick start things again? Or I should say, kick STOP things again
ONe of the reasons haven’t tried to come off my meds is because of this fear.
Supposedly the weight gain is less with Nori than Ami, as there is less serotonin action in Nori. They are the same class of meds, so you could switch straight across. A doctor might say it wouldn’t make a difference, but for
those of us that have to trial these meds, I say it’s worth a shot?
I have gone off my medications completely and have restarted with success. I have had MAV since 2006, diagnosed and treated since 2009.
I have had periods where I have been so well that I have been able to go medication free for up to a year. My most recent “crash” was this past summer and I started taking Topamax again. I have reached my maximum dose of 150 mg and it is working well. I have also been on this dose of Noritriptyline as well several times but the weight gain was dreadful.
James, sorry to hear you are back in a bad place and having to wonder what combo of meds you need; it’s hard when you don’t know whether to give something more time, or try increasing this one, or decreasing that one, or what the heck… I hope your neuro is good at working with you and listening to you.
Kelley: aargh, you put some fear into my heart! (But I love you and your knowledgeable advice anyway! Because I am not doing at all well with my transition from Strattera (9 years) to venlafaxine (5 weeks) to nortriptyline (4 days). I am back to the bad old days of a lot of motion sensitivity and those dizzy “whumps” or jolts in my head; I don’t even want to drive. Hopefully as I titrate up the “nori” it will be better. But I’ve always held in reserve the idea that if I have to, I could go back to the Strattera.
James, good luck and take care! Hang in there until you get to a better place.
Thanks so much for the advice everyone,I reeeally appreciate it.
My doc in the email said it sounded like basilar aura–this is what I told him in the email ‘‘Today I had another ‘‘slam’’ so to speak-It’s like I’m going to have vertigo and it is almost violent the way it feels.Like someone drove you away really fast and you were standing in the back of a truck.’’
My bp has been on the highish side sometimes 150 and when these slams happen the bottom was in the 90’s and once around 100.So that may be why he is recommending the increase in Verapamil.
I think I will give it another week and try to start living like a nun again and see what happens.But it does seem to make sense to probably try to go up on the ami,Like Jem suggested,that is what seemed to have helped me the most.Maybe I will stabilize again.I’m hopeful.
Thanks for the advice on the Nori–Kelley it’s nice to always have more options.
Tracy–that is encouraging news that you have done well,going on and off.
Nancy- You hit it right on the head with your summation of my dilemma.It’s so nice to have someone who knows what you are talking about.
You are a great bunch of people!(Who don’t deserve this crap!)
tracy were u on both nortriptyline and topamax at the same time? which one is more effective for you? do u have any trouble with walking or balance and did either help you?
i first tried nortriptyline and lyrica and they were helping but i couldnt tolerate the side effects. i tried them again at a later date and they both worked but not nearly as well as the first time. interestingly i got different side effects the 2nd time around. i would love to get off the nori to lose some weight but im afraid if i get off it and then try it again it wont work at all- it certainly doesnt work as well as it started to the first time.
Thought I would do an update to this thread in case anyone does a search later.Have gone back up on meds and so far so good.Seems like so far I have stabilized again.Went up to 360mg on the Verapmil and 37.5 on the Ami.
thats great james glad to hear it. what dose of ami were u on before u went down? did you have any trouble with walking or balance and did these meds help?
Sarah,
I was down to 12.5 mg of the ami.Was on 240 of the Verapamil.I have a bit of high blood pressure so this med is good for me.
No trouble with balance or walking except of course when vertigo would hit.
I think it’s important to walk every day.Even if it is just to the end of your driveway.
