"Head pressure" migraine + topamax..?

I'm 29 years old. I have had a sensation of 24/7 head pressure for 7 years and only recently saw a neurologist about it. The delay in treatment is for a few reasons, mostly because I didn't get health insurance until recently. The MRI/MRA came back normal. I do not have classic migraines, rarely get nausea, and only occasionally get basic headaches. Generally I only deal with the constant pressure, which I rate at "medium" intensity. I still function adequately so this is mostly at the level of "major annoyance" and basically it ruins my ability to concentrate.

The neurologist thinks the head pressure is a headache/migraine, and gave me Topamax for it (I got generic.) I'm a month in and just went from 50mg daily to 75mg two days ago (yes I took a slow approach.) I'm supposed to go up to 100mg. The neuro says it would take 4 to 6 weeks to notice any improvement, however I have seen some folks say they noticed improvement on the third day with just the 25mg dose. I've just increased to 75mg and haven't noticed any improvement at all, after a month. I have no plans on stopping the treatment until the neurologist tells me to do so. But I'm wondering if this could mean the drug may not be effective for me, at this point? Any experiences or ideas on this?

Hi Batman,

Sorry to hear you're having no relief from the Topamax at this stage - and that you're suffering 24/7 with the pressure. Can you get a second opinion? I don't think one opinion is enough for 7 years of unrelenting head pressure. Did your GP give you any blood pressure lowering medications to try? Do you have high blood pressure? Have you tried abortive medications like the triptans? Or are there health reasons why you can't do that. If I were you I don't think I would give up after one neurologist - they are notoriously crap with migraines (if indeed it's migraine you have).

I wonder if anyone else here has head pressure. Other people have spoken about feeling like the top of their head was going to come off...is that the sort of pressure you feel? I think they get pain with it though.

It is true to say that I thought Topamax was helping me after a couple of weeks, then I thought it wasn't, then after 4 months I realised it was helping. Everyone is so different though, as you would know.

Best of luck and keep us up to date with your progress **((hugs))**

Welcome to the group! Please look up New Daily Persistent Headache if your pain came on suddenly. I have this (mine started suddenly over 5 years ago, and is 24/7). There is a MD Junction forum for this condition if you are interested. I find visiting a variety of headache forums helpful as you get a variety of info and connections with people. I have a constant head pressure sort of headache, which I describe as a feeling like a helmet is on too tight, although it widely varies in intensity. I would not give up in the Topamax until you have spent about 2-3 months at the 100 mg full dose...it can be a slow working med, as many of the preventatives are. It apparently has both the highest side effect rate and highest rate of helping daily headaches. You are doing well to titrate up slowly. Drinking a lot of water can also help any side effects such as tingling. There are lots of treatments to try for chronic headaches...but they require a lot of patience because a lot of times it takes quite a few to find something that helps. The goal is to reduce the pain a bit so you can function better. Its amazing you have gone on so long without seeking medical help. Good luck and best wishes.

living wrote:Hi Batman,

Sorry to hear you're having no relief from the Topamax at this stage - and that you're suffering 24/7 with the pressure. Can you get a second opinion? I don't think one opinion is enough for 7 years of unrelenting head pressure. Did your GP give you any blood pressure lowering medications to try? Do you have high blood pressure? Have you tried abortive medications like the triptans? Or are there health reasons why you can't do that. If I were you I don't think I would give up after one neurologist - they are notoriously crap with migraines (if indeed it's migraine you have).

I've already had a second opinion, but unfortunately there is some complication in my story. I should have said so in the first post, but the head pressure began suddenly after having several panic attacks which resulted from drug abuse, yes, 7 years ago. (I've been 100% sober for many years now.) I have seen a psychiatrist who knows the whole story, and he recommended Topamax as the "first line treatment" for head pressure, but also said other anticonvulsants, beta-blockers, etc, could help. I waited until I saw the neurologist before I tried any medication, and even though I didn't tell her about the addiction problem, her suggestions were generally the same as the psychiatrist's.

Since I take Paxil (SSRI antidepressant) and have done so for such a long time, this neurologist thinks it would be tricky to try Amitriptyline or other tricyclics. She also said that the best beta blocker, Inderal, can cause depression and counteract antidepressants and also cause fainting if you have low blood pressure to begin with (which I usually do.) She seemed to indicate that Topamax is one of a very limited number of options.

tortoisegirl wrote:The goal is to reduce the pain a bit so you can function better.

Not to sound foolish, but is that your only goal? My neurologist told me that some preventatives sometimes help chronic daily headache patients enough so that they get just 1-2 headaches a month--they can then get off all the meds, and function almost normally again. She seemed to think Topamax was particularly good at "reversing a chronic headache" and said this was even possible in my case.

Hi Batman,

Thanks for sharing your history. Did your medical professional have any idea what kind of mechanisms could be involved between drug withdrawal, panic and kicking off 7 years of bad head? It sure sounds like you're getting good advice anyway, since you've got a few different docs. I was just concerned that you were all on your own and only had seen a single health professional. Since tortoisegirl posted and said she has the same kind of head pressure it sounds like you may well get some good support and advice on here from her and others who have the same condition.

You haven't mentioned any side effects. Are you getting away with none at all? Perhaps it's worth getting the non-generic too to see if that makes a difference. I'm a control freak when it comes to my Topamax since I screwed up BIG time by pulling my tablets out of their foil and putting them into a monthly granny pack thingo so I wouldn't forget to take them. Turns out they were degrading from the light and air before I took them and I was getting so many migraines. The pharmacist's eyes fell out of her head when I told her. (I'm in Australia and apparently we have different formulations and packaging than elsewhere). Anyway, long story short...stopped doing that and turned back into a zombie for a short while and started getting the benefit again. But was actually a good 4 months before I could be sure. I take 50 mg at night at precisely the same time every night, 6pm.

I definitely have side effects from Topamax. That's why I'm starting so slowly. The worst of them for me has been tiredness and apathy (I'm usually like that anyway, but it's been a lot worse lately). The mental slowing and memory problems are starting to show up... the more I increase the dose, the more I notice it. There's also dry mouth, and acid ingestion and excessive belching. Obviously I'm worried about taking the full 100mg, I wonder how tired/slow/forgetful I'll be then. Not to complain, but when you have ADD and struggle to get anything done to begin with, this is not exactly a helpful medication.

I won't be able to take the non-generic because I just don't have the funds for it--my insurance barely covers name brand drugs at all.

I had issues with several medications that I took with the acid stomach and belching etc... I used protonix to combat that and it was very effective.

I am not being nosy here, but what drugs did you kick? I have had doctors explain to me the correlation between migraines/headaches and cocaine binging. It seems to be a thing. I, myself have never binged on cocaine, so it didn't have anything to do with my situation, BUT my curious nature had me asking about it.

I am not sure what exactly they can or do do for that, but like I said the drug use seems to be a question that has been posed my the many Doctors I have had. I think I was finally sick of being asked that when I inquired on the cocaine issue. Any ways it might be something to think about. Your Dr shouldn't judge you, although they may, but if you are uncomfortable I would find a different DR.

I applaud you and your efforts to stop using drugs. I am glad you have been able to find help with that. I also understand how you would (might) have some trepidation in taking any medications after that previous experience. It may be tricky to find something that works for you, but keep trying! for me the Topomax didn't seem to do anything. I didn't notice any side effects, except the flavors of some foods were undesirable. good Luck and keep us posted!

Hey Batman,

Well lol - you're definitely on it then...I know those side effects very well. Don't fear...they will subside. It is very disturbing isn't it. I can understand your concern if you also have ADD. Can't you get prescribed Ritalin (or whatever) for ADD? Or is that from the class of drugs you had some problems with in the past?

As you increase your dose of topamax the side effects will be at their worst. I know it drags on and on but 6 months down the track I don't feel any side effects at all - well, just the occasional fairy dust tingling in my cheeks, or, if I skip a dose which happens VERY rarely due to my alarm being set, I get a bit of the apathy and heaviness because I take it as soon as I realise (usually 6am when my hubby says goodbye) and then dose up every 18 hours instead of 24 until I can get back to my 6pm timeslot for taking it. So for that short period I'm slightly taking more than usual.

Once you're stable at your target dose the side effects will just get less and less over time. If they don't entirely subside 100%, it will be as close as dammit! I didn't think that even at 25mg the zombification could possibly pass, but it did completely. Same again at 50mg one month later. Zombie for a few days or a week, and gradually it lifted and so did the tingles etc over the following couple of weeks. Cognition was slower to lift but it did come back - it's important to note that for me anyway, I felt cognitively slowed but my performance on tests/essays/etc didn't change. So it might just be a feeling rather than a fact.

The only reason I suggested the non-generic was because I thought you didn't have any side effects so I wondered if it was a dodgy generic from god-knows-where with no active ingredient in it. With those side effects though, you're definitely on the topiramate.

I really hope it starts to work for you. Fingers crossed here.

Batman55 wrote:Not to sound foolish, but is that your only goal? My neurologist told me that some preventatives sometimes help chronic daily headache patients enough so that they get just 1-2 headaches a month--they can then get off all the meds, and function almost normally again. She seemed to think Topamax was particularly good at "reversing a chronic headache" and said this was even possible in my case.

That is my adjusted goal after 5 years and 5 months of 24/7 pain. I too have heard this goal, but never for a sudden onset 24/7 NDPH-type headache. It is very rare to hear of someone with this type of headache after a couple years that gets cured...without having some other likely condition that was treated that cured them. To me (and the literature) there is a big difference between NDPH (sudden onset daily headache with no history) and Chronic Daily Headache, aka Transformed Migraine (migraines/headaches increasing until they become daily). CDH is historically much more treatable, and yes, has a chance of being treated with a med which the patient can then taper off. Of course, there are many unlucky ones, which are likely more highly represented online. I have tried over 50 meds/treatments without long lasting significant relief, so I apologize for my pessimism. I adjusted my life to my new normal while still pursuing treatment (having realistic goals).

Everyone is different--you will probably have much better luck than me. I just wanted to point out that realistic goals can be very helpful in treatment of headaches. If you reach one, then you make a new one which is higher, like stepping stones. From my experience, if you have NDPH, your doctor's statement would be quite an atypical scenario, although not completely unheard of. I unfortunately have had many doctors and practitioners think they can cure me, but this isn't so. There are lots of others in the same boat as me with my condition, including a few on this forum.

This is assuming you have NDPH and not CDH (since you said 24/7 and didn't mentioning headache history worsening, I assumed sudden onset). NDPH is still a relatively new diagnosis that many neuros don't even know about, or believe that it is the same as CDH (research and anecdotal history has shown this untrue). As an example, my neuro claims to have close to 100 long-term NDPH patients, and only a handful have even got significant relief (apparently none have been cured). It would be during the first couple years the headache would be more likely to break on its own or be able to be treated.

Here are the NDPH diagnosis criteria if you are interested:http://www.helpforheadaches.com/articles/ndph0905.htm Its considered highly treatment-refractory.

I wish you the best with your Topamax treatment--keep us posted. Best wishes.

Dear tortoisegirl,

I'm really sorry to hear about your case. Obviously it makes me feel guilty that I complain, when I know there's so many headache sufferers out there who've been to the moon and back and still can't find adequate relief.

About my diagnosis, I'm not sure what it is, for certain. The first and second time I saw the neurologist, she said it "seems like CDH." The third time, there was some mention of NDPH, but she didn't say that was the diagnosis. In any case, my neurologist had me feeling a bit optimistic, as she thinks between 3-6 months on the Topamax (if it works) and I should be able to decrease the dose and get off all the headache meds. I asked if she had "chronic headache patients get off all the meds" before, and she said it happens "quite often." At the same time, I'm a pessimist myself, and I'm not expecting much here either.

What I can tell you about the history of it is that it was not ALWAYS 24/7. Seven years ago, after I got those panic attacks, that's when I first received this sensation of "head pressure." While I had the sensation most days after first feeling it, it wasn't ever-present. It started occupying more and more hours of the day gradually, until I would say around 3-4 months from onset, then it became 24/7. The intensity has increased gradually over the years, but the intensity can also vary depending on the day, and what activities are occurring (eating and exercise can relieve it a little, or make it worse.)

NDPH diagnosis only requires that it be daily and such, not 24/7, although the vast majority of cases are 24/7. To have breaks is a good sign that it may be "easier" to break, as is the lower perceived intensity (ie. you work and haven't pursued extreme treatment). You are not at all complaining...if anything, I was. I just wanted to point out that I don't agree with your doctor's optimism. I kinda doubt they have seen a lot of long-term NDPH type headache patients. I would be curious what percentage she would give the Topamax to "work" for you.

From my experience, which I admit is skewed to the more severe patients who would pursue online support groups, it can take many meds to get any sort of response. Topamax is however the big gun of the daily headache meds (highest chance of working, but also highest chance of side effects...I got just about every one from memory loss to hair loss). In contrast, yes, a "typical" CDH patient may be able to try a med or few and find something that brings them 50% or higher relief, and may be able to get off of it. Maybe she thinks of NDPH as more of a refractory CDH? I know its better to instil optimism from the start and such, but I would have found her misleading.

I know you say yours had a 3-4 month onset, but was it daily from the beginning? Could you say one day you were pain free and from the next day on, you had some sort of daily pressure/pain? I too get the wildly varying intensity. My normal pain can double or triple throughout the day, and double that when I'm sick...thus I have a really hard time with the 1-10 type scale, because even on my best days, I'm definitely not a 2 or whatever. Hang in there! Best wishes.

tortoisegirl,

Actually I am an incredible complainer--about the worst you'll ever find in fact--but I have hidden that side of myself here because I've learned from experience: it makes one very, very unpopular on message boards. I have a bit of a conundrum in explaining functionality to people on headache/migraine/health boards. On the one hand, I know that my 24/7 headache is very tolerable if compared to many: I don't have it along with other serious health problems, I don't have classic migraines, I don't have actual pain, I don't have aura/nausea/sensitivity, and so on. Going by that, I should have little reason to complain, in fact I should be doing almost everything in life with barely a hitch.

But on the other hand is my personal side of the story, that being that my 24/7 head pressure is difficult for me--personally--because I've always struggled anyway, having ADD, anxiety, and a confusing combination of learning issues that makes it difficult to get a handle on things. As far as what's going on in my actual life, I'll just say I'm not doing too well, and leave it at that. But seriously, I'm not looking for sympathy here, just trying to make a point.

As for your questions: it was so long ago I can't be sure if the headache was daily from the beginning, but my inclination is that it probably was.

One question I wanted to ask you: since you've been through 50 meds or so, have you found any--or any combination--that has worked "better" than others? That might give me some ideas if Topamax ends up failing me, so I'd like to know.

Unfortunately I've failed or been unable to tolerate every treatment I've tried except opiates. At one time, I got over 50% relief from them on a daily basis, but now its way less (hard to compare to before). I know they are still helping quite a bit because my doses are low when I wake up and my pain is way bad until my dose kicks in. If Topamax doesn't work, I'd try either a beta blocker or anti depressant. A combo of two classes can also help. I've never even got to that point though (either wasn't able to tolerate or got no noticeable relief with one). I also take muscle relaxers, but thats more for my neck pain/spasms/tightness than the head pain. I got Botox two weeks ago and the first week was great, but this second week I feel nothing. We'll see (it is supposed to last 3 months, so it could still help overall). Best wishes.

Dear all,

I see the neurologist on the 17th, quite soon obviously. A long time ago I was instructed to take Relpax once or twice a week. I have not done so. While I'm skeptical that it will provide any relief, I'm really just kinda scared of the drug. I'm already on Paxil 30mg (SSRI) and Topamax 75mg. There's a known interaction with SSRIs, but the neuro said I could still safely take Relpax. I'd like to take it and gauge the response, but I'm still hesitant. Has anyone tried Relpax before on top of other drugs?

If it brought relief, I'm thinking that could shed a lot of light on the kind of headache I have, ya know?

Relpax is a Tripan, and the combo of a Triptan and SSRI has been shown to increase the chance for Serotonin Syndrome. I'd talk to your pharmacist and read up on it and see if its something you feel comfortable risking. I kinda doubt taking the Relpax once to see if it even helps would be a problem, but of course I'm no doctor. Doctors have varying responses on this topic...seems to waiver between its a low risk (literature overplays it) and something you don't want to play with (potentially dangerous). With NDPH, its rare to get help from Triptans like Relpax, Imitrex, etc. But, if they help, its great to have a med to take on your worst days of the week. There are other "abortives" besides Triptans if you need to stay on the SSRI and don't want to risk the Triptans. Best wishes.