New Daily Persistent Headache Support Group

I was rather surprised when via his nurse my neurologist just prescribed vivactil for me as a preventive. I had just seen him and we hadn't discussed anything like this. I called per his request to report that his latest plan for acute relief failed (three meds: tramadol, a prescription NSAID, and an anti-nausea med), and she said he now wants me on vivactil 5 mg 2x/day and added Zomig as an acute med.

Walgreens described vivactil as an old SSRI that isn't used any more for depression -- they didn't even have it and had to order it. The other low-dose SSRIs I've tried didn't help and just sprinkled more unwanted side effects into my life.

Experience or comments before I decide whether or not to try? I rather think it's a waste of time and having just recovered from Topomax, I'm not too eager to spin the wheel again.

BTW, I've already had a go at the Zomig and it's another triptan that didn't help but at least doesn't nail me with side effects.

Wow that is a really old medication. I had never heard of it so I looked it up and it was new in the 1960s. As to whether it will work or not...I don't know. I don't really understand enough neurochemistry to know it it is better to go back to old meds or progress to newer SSRIs or SNRIs or even into atypical antipsychotics (where my medication Seroquel is). One site I found was giving hints on how to help with the dry mouth, so I would guess that is a pretty common side effect.

I think a call to the prescribing neuro is in order. If you can't get hold of him or he is just not agreeable about answering questions then a long talk with the pharmacist about what you can realistically expect in terms of side effects. The pharmacist will have no clue about whether it will help the headache or not, and your doctor may not really know either. It sounds like he is trying everything he can come up with. I might also ask the pharmacist why the medication is no longer used for depression. Did they get stuff that works better with less side effects or was it dangerous for some people? That is kind of important to know. Sorry that my answers aren't any better. Maybe one of the people who has had this headache a long time will have tried this med but I am not sure how many doctors even know it is out there. Mary

My Neurologist is a very thoughtful doc and good communicator and on two weeks vacation. His nurse, who I know pretty well, called me to tell me this idea and she described this med as I think "ancient." She also acknowledged they were "challenging" me to try something new. So you're right, he would have to explain the "why" of this. He's typically up to the minute on literature and so I can usually trust he has a reason behind what he recommends other than "I am running out of ideas," although I couldn't blame him.

I did ask him to think about the clue that valium helps me so perhaps this has something to do with that. I've also reacted badly to pretty much everything else so he may be turning to things that are old and safe. Maybe baby aspirin and martinis are next.

The pharmacist was sort of mystified by it too but did say that it's currently used mostly for nerve pain. Typical SSRI side effects, apparently not in the notably bad category.

I'm sure they'd understand me holding off or coming back with questions but this was such a curve ball that I thought it worth asking about here.

Ahhh, currently used mostly for nerve pain may be your clue. Some of the other meds commonly given to us are used for nerve pain like lyrica and neurontin (those work for seizures too and probably a bunch of other things). Anyway it looks like he is going backwards because it has a history of working for pain and depression and since drugs in both of those classes are sometimes used effectively that is my guess of why he would pull an ancient medication out of almost retirement. I would still ask, but that is my guess. It might just work too and they can probably predict pretty well what sort of side effects are likely since they have about 40 years worth of people taking it (unlike a new drug where they might only have the clinical trials). Please let us know it that is his reasoning as I am really interested especially if this turns out to be a helpful medication for you.

Dear friends in daily headache,

I have for now decided to hold off on starting this med after consultation with myself, my closest advisors, and my health psychologist. I am more expert at managing pain than side effects and just need a break from the latter.

In the meantime, while my neurologist is on vacation, your continued input is most helpful, as I will ask about his reasoning which may (or may not) persuade me to start this -- combined with your commentary. I have taken at least two other --tryptalines with no benefit and a fair amount of misery so I am not eager to go to the wellspring of this med.

Thank you for your thoughts and reports, please keep them coming. xntj

Just wondering what your side effects were? the listed ones don't seem too bad to not try it and seem easily reversible when the medicine stops. Much less so than with Topamax or anti-seizure meds, or even more current anti-depressants. Maybe I'm just more adventurous when it comes to medicine and my head and stomach conditions but if it stands a chance of working and the side effects aren't serious, i.e. won't increase my chance of serious disease, death, etc, but rather symptomatic, I give it a shot and monitor myself as best I can. I don't enjoy my life as it is now, and dearly want it to more closely approximate what it used to feel like and to me, that's worth seeing if the medicine will work, even if it might give me side effects. If they do, then I stop and move onto something else if that's possible.

I am still working with different meds, but I kind of understand the reasoning to just take a break and let everything stabilize for a while. The medication roller coaster can get really draining and the side effects can be quite brutal. If you know what to expect from the headache and you are pretty good at dealing with it you may prefer that for a while to medications that are unknown side effects, fairly low chance of working, and keep you from ever feeling stable. If you can't tell I have thought about taking breaks before (then I stumbled on stuff that helped so obviously I am not taking a break).

It sounds like you may be able to enjoy life more without the dread of what is coming next in terms of side effects (to say nothing of the hope-disappointment cycle that comes with each failed med). You may reevaluate at a later time, but it does make sense to me. I still hope that somewhere there is a medication that will help you, but finding it may be more trouble than it is worth at this point.

To answer your question about side effects, from having been on several other low-dose SSRIs with no benefit, the side effects were tiredness, disorientation, and changes in my mental affect that were not positive. I felt like they really messed with my head and my mood and not in a good way.

Having just come off Topomax after a brutal couple of months, I presently find the pain easier to deal with than the unpredictable side effect roller coaster, especially since I have seen no benefit and only misery from the other SSRIs. I also find that the side effects themselves create a lot of stress and tension in my life because they diminish my ability to function, and I think that also contributes to the headache.

I may be willing to jump back on the meds merry-go-round later, but right now, I just need a break.

I'm also trying acupuncture again and prefer to not layer one effort on top of another so I can try to see if one thing is working versus another. I will report on the acupuncture when I'm further along.

The reports from others about this med ARE helpful for my future decision making. Thank you.

I will be interested to hear about the acupuncture. That is one thing I have never tried though people told me I should. (I found the needles too creepy...allergy shots were bad enough). At the moment my meds are working well so I probably won't do it myself unless things change, but I still want to know if it works.