For those who've tried 25+ medications

I have a few questions here.

1) What's your current diagnosis (or what was it, if your headaches are now under control)? Did you ever have a sensation of "head pressure"?

2) Did you ever find any medication that brought some degree of relief, for even a short period of time? I'm also interested in those meds that relieved the headache somewhat, but you had to quit due to side effects.

As an aside, I'm weaning off Topamax now. Once that's done, I'll start Depakote 500mg ER (actually, the generic, divalproex sodium ER.) Going through several forums, I have found little information about anyone using this for headaches. Nonetheless, the side effect profile looks similar to Topamax--lethargic, confused, dull.

It's kind of aggravating, in a way. The next time I can see the neurologist is in 3 months. I don't expect Depakote to do anything but cause side effects. And I said to myself this would be the summer where I find some relief for this damn headache. In all probability, it looks like another 3 months of no progress ahead of me, really... I'm sure I'm complaining, but I've had this "head pressure" for 7 years now, I'd have to be lying if I said it didn't cause problems.

EDIT: Deleted irrelevant post.

My diagnosis is something like: Chronic Daily Headache with Migraine charactistics. I tried 75+ meds. If I had to stop taking them because of side effects, it was relatively soon into them, and I don't think they had chance to do much for my pain. the only things that work for me thus far are Botox, and Narcotics. Both are just controlling my pain to an acceptable level, not taking it away.

I am not sure about "head pressure". I have aches, and throbs and stabs, but I guess I haven't ever considered anything 'pressure'. Methadone and Fentanyl are the two big ones I had to quit due to side effects. From day one, with both of those I just never stopped puking. For whatever reason, my body doesn't tolerate either of those medications.

Batman,

Sorry it is frustrating, but at least you have lots of company here who feel the same way.

Not sure what you mean by head pressure? Pressure like you would feel with a head cold? If so may want to investigate sinus problems. At least one person got significant relief from a procedure that drilled out his sinuses.

If you mean pressure like a vice around your head, then yes, that is how my headaches feel. I tried every medication imaginable, with either no effect or awful side effects. I have finally gotten much better on natural supplements. 5000 mg vitamin D, 400 mg magnesium, 200 mg bio- identical progesterone, 12.5 mg iodine. I went from 80% headaches days down to 20%, most fairly mild. And all the neck and shoulder pain is gone!! My brother tried this plan also (minus the progesterone) and had his first migraine free period in over 2 years.

So it might be worth a try if you don't get relief from the depakote. 3 months between visits sounds like a long time.

I've got so many pains in my head, I wouldn't know where to begin but pressure is one of them. The only meds that have ever helped me, although never for too long, were zonegran and neurontin. I'm starting lyrica today...

You've already heard a lot from me on the issue but I wanted to write in that I have New Daily Persistent Headache, definitely over the 25 med threshold, and would describe my 24/7 headache as pressure type but I also get more throbbing types on top of it. I have had quite a few preventatives that help for a day or week than quite (like most recently the Botox--got a week out of that with about 50% relief). It is quite common to wait 3 months between neuro visits, but shop around to see if you can find one with less of a waiting list. A lot of the meds take that long to taper up on and try out.

On med two, don't already give up! Just be realistic and have realistic goals. You'll drive yourself nuts if you think that in say one summer you can get cured, but if you want to find something you can tolerate that say brings down your pain 25%...thats doable given some time. I couldn't begin to imagine your level of anxiousness at year 7 though. Do try to be patient. See what you may be able to do while waiting for the neuro, whether its finding a coping with pain class at a local hospital, trying chiro or massage, etc. You do want to do one thing at a time, but for something of more immediate benefit, you may be ok to do a short + long term thing, just keep a very good headache log. I assume you've tried the looking for environmental and food triggers thing? Rare for 24/7 headache, but if say you had a really bad food intolerance, it could happen. Lyme is another thing to look into but unfortunately I haven't found any doctors who are literate in it which accept insurance, so for me its a no-go.

I'm at year 5 and 5 months, but had treatment from the start. The only thing to consistently help me is opiates, but my doctor won't dose me high enough to keep up with my tolerance. I was able to tolerate most meds long enough to see if they would work, but I'd say 80% had unsustainable side effects for me. At my best I got 40-80% relief depending on the day and time of day. Probably at 0-40% now. Going to go in and beg again next week lol. Depaoke was one of the first meds used for migraine prevention? Tried and true, although a lot would say there is "better" stuff out there (less side effects and higher success rate). Each doctor and patient likes something different though. If you do need med 3 or beyond, I'd want to try a different class--anti depressant or beta blocker probably. Also ask your doctor if they have any abortive suggestions, such as something you could take at least on your worst couple days a week.

For those wondering what I mean by "head pressure"...

A lot of folks describe it as a vice around their head, or being in a tight helmet. That's close enough to be similar to mine, I suppose, but really I describe my pressure as coming from within... as in, something clogged inside my head, or trying to push its way out. I had an MRI w/ contrast and MRA done.. sinus problems are often visible on an MRI. I read the results myself: "no intracranial abnormality." I asked my neurologist if there was a sinus problem, she said "we looked for that, but you don't have it." Not my mention, I also have pressure in my neck and sometimes the upper back.

This is mostly a painless sensation. It is highly uncomfortable however, and causes endless difficulty with concentration. I've had it 24/7 for 7 years, but intensity changes throughout the day. I don't get migraines, aura, nausea. Sometimes I get car sickness, however.

tortoisegirl wrote:
I'm at year 5 and 5 months, but had treatment from the start. The only thing to consistently help me is opiates, but my doctor won't dose me high enough to keep up with my tolerance. I was able to tolerate most meds long enough to see if they would work, but I'd say 80% had unsustainable side effects for me. At my best I got 40-80% relief depending on the day and time of day. Probably at 0-40% now. Going to go in and beg again next week lol. Depaoke was one of the first meds used for migraine prevention? Tried and true, although a lot would say there is "better" stuff out there (less side effects and higher success rate). Each doctor and patient likes something different though. If you do need med 3 or beyond, I'd want to try a different class--anti depressant or beta blocker probably. Also ask your doctor if they have any abortive suggestions, such as something you could take at least on your worst couple days a week.

I realize getting cured in one summer is very unrealistic. I didn't mean to imply that was the goal--rather, just finding some way of relieving the pain a bit, consistently. Getting the pain level down 25% would be more than acceptable, of course.

Botox only lasted one week for you? That's disappointing, of course. But at this point, what are you looking at next?

For abortives, I was given scripts for Relpax and Compazine. Everyone knows about Relpax, but has anyone here ever tried Compazine for headache/migraine? Relpax will only be a "test" drug for me. I have two sample pills of it, apparently there is no generic available, so even if it works, I won't be able to purchase it.

I hope I'm not asking too many questions here. The last thing I want to be is an irritant, y'know.

I used to take Benadryl and Thorazine in an injection. Eventually the thorazine became unavailable. i was then seitched to compazine, with the benadryl in an injection. Then again eventually the compazine was unavailable that way and I had the standard Benadryl and Phenergan injectable. Taking that, in conjunction with Oxycontin twice a day and oxycodone for breakthough pain kept me afloat for a while.

Hi,

1. I have had chronic intractable migraine/New Daily Persistent Headache for 13 years now. It began October 28, 1997 and, except for two brief periods of remission is still constant. I am 3O now, but they began at 17.

2. I have definitely tried at least 25 medications. Right now, my drs focus more on pain control than prevention of migraines.
Here are the ones that have helped the most:
Preventatives
Zoloft, Zanaflex, Tegretol, Pristiq, Periactin
Abortives
Decadron, IV Depakan,

I have also tried numerous pain medicationsl.

I would describe my headache as sharp, achey, and always there.

The one thing that has helped a great deal for me has been an occipital nerve stimulator- kind of like a pacemaker in the back of your head.

Pain free days,
sailingm

Ive seen some research that categorized migraines as either imploding (like a vice around the head), or exploding (pressure pushing out). It sounds like yours may be the later.

http://www.medpagetoday.com/MeetingCoverage/AAPM/25592

Apparently these represent different nerve areas being in play. The imploding type is reportedly more treatable with Botox.

Compazine is an anti nausea medication. Do you get nausea? If not, maybe your doctor thought it would increase the effectiveness of the Relpax, assuming you were instructed to take them together? Does this doctor understand your headache pattern, ie. you don't get specific migraine episodes for example? For daily pain, I'd recommend trying an abortive as soon as you start to get a spike, to try to keep it down to a certain level, staying under the daily/weekly limits your doctor hopefully set. The Triptans like Relpax can be very hit or miss. If it doesn't work, see if you can get a sample for one of the other 6 or 7 of them. Read up on the potential side effects in advance so you know what could happen. I always like to take new meds at home with my hubby home...just in case. I've never had a serious problem, but I just wouldn't want to be at work or home alone and have to go to the ER or something.

I don't have any specific plans right now since my doctors have no more ideas for me (besides the pain med approach I'm on). I've seen dozens of doctors and tried dozens of treatments. I was going to try to get in for a pain follow up to ask about getting my pain meds upped, but my doctor is out when my refill is due next week (hopefully someone else can write it for me). I'm deciding if I want to try the Botox again when the 3 months is up, in hopes that I'd get more lasting relief. I think it'll depend on cost. Best wishes.

Migrainegirl wrote:Ive seen some research that categorized migraines as either imploding (like a vice around the head), or exploding (pressure pushing out). It sounds like yours may be the later.

http://www.medpagetoday.com/MeetingCoverage/AAPM/25592

Apparently these represent different nerve areas being in play. The imploding type is reportedly more treatable with Botox.

Right there in the bolded print, that's exactly my concern. According to how I describe the headache, I have the "exploding" type. If we assume the worse--that Botox might not help--what exactly can decrease the intensity of this rare kind of headache? Minimal if any pain, no aura, no nausea... just pressure. I'm sure there's 100 medications to try, but what I'm looking for is a preventative, and if I can use this group as an example... preventatives don't seem to work too well for those who've had daily headache for years.

I don't think opiates are a good idea for a variety of reasons. There's tolerance, then they don't mix well with other drugs such as SSRIs (at least, not always), they're addictive and I'm an addictive personality. Of course, they're the only option for many people and I'm glad some people find relief with pain meds, but I don't think they're for me--in fact, my headache is not so much "pain" as it is simply "nuisance." Although, discomfort can be tough to deal with as well, if my example counts.

tortoisegirl wrote:Compazine is an anti nausea medication. Do you get nausea? If not, maybe your doctor thought it would increase the effectiveness of the Relpax, assuming you were instructed to take them together?

I don't have any specific plans right now since my doctors have no more ideas for me (besides the pain med approach I'm on). I've seen dozens of doctors and tried dozens of treatments. I was going to try to get in for a pain follow up to ask about getting my pain meds upped, but my doctor is out when my refill is due next week (hopefully someone else can write it for me). I'm deciding if I want to try the Botox again when the 3 months is up, in hopes that I'd get more lasting relief. I think it'll depend on cost. Best wishes.

I told the doc I thought Compazine was only used for anti-nausea, but she said it is often used in IV drip for migraine patients as well, and is *also* a definite migraine drug. She does not want me to use it with Relpax. The only time I get nausea is from car sickness, which I get--mildly--around 12-15 times per year.

That's a real shame that you're out of options. I wonder if there any medical advances on the horizon for headache/migraine?

I have pain 24/7 and it is frequently the "exploding" type and sometimes the "imploding" type. I also experience dull achey, ice pick stabs, throbbing, etc. It seems to vary with weather, circumstances, meds, etc.

The "exploding" type pressure has been extremely difficult for me to get any relief from and seems to be tied to weather and barometric pressure changes as well as elevation changes. IV magnesium while I was hospitalized seemed to be of a little help. DHE helps a little but not to the extent it does for other types of migraine pain.

The "imploding" type pressure seems to respond pretty well to muscle relaxers and anti-inflammatories.

I've tried well over 25+ preventative and abortive meds, probably more like 50-75+. I've also tried countless vitamins, supplements, etc. Side effects either come shortly after beginning or when the dosage is increased. Oftentimes a drug that worked for awhile (nortriptyline and lamotrigine) but was increased when the effectiveness started decreasing, starts causing me big problems. Usually there are multiple side-effects that cause me to discontinue.

Don't give up yet just on what the published side-effects for a med indicate. Each of us is different and responds differently.

If there is something that helps with the "exploding" type pressure, I'd sure like to know more about it. This has worsened considerably for me over the years.

tecky wrote:
If there is something that helps with the "exploding" type pressure, I'd sure like to know more about it. This has worsened considerably for me over the years.

I know of at least one person I found online, exactly my age (late 20s), almost exactly my kind of headache--head pressure, coming from within, constant, minimal migraine symptoms--who found relief with Amitriptyline. It's worked for her for well over a year now, without increasing dose much, if at all. I have not been able to try it because that drug is an antidepressant, and I'm already on one.

There is also another person on this forum who has a chronic pressure headache--don't know the specifications, though--who says that Amitriptyline helps to "manage" the pressure.

My diagnose was daily chronic headache/Migraine. Five times a week 7-8-9 intensity , no " pressure " like you. I did not suffer many serious side effects just none ever worked. I take clonodine 3 x a day and it worked from the first dose. I have taken it for 19 months as a preventive and I can take a dose as an abortive. If I am late to dose my head pain starts.

Keep trying things maybe your next script will help. I was six years like that and the DR. who prescribed the clonodine was filling in for a new DR. I was just starting to see.