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Topamax and poly-drug use.. questions!?

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Posted 3/24/2011 11:08 AM (GMT 0)
For Batman55:

(Disclaimer. Right here, from the beginning, I’ll announce that I’ve never been known for my bed-side manner, empathy, or sugar coating my words. I’m not politically correct and I lack tact. I would have starved to death if I were to have practiced emo psychotherapy. But, every darn one of us has problems. We deal. So, my annotated notes to ‘BATMAN’…)

…I'm 29 years old and have been on this forum occasionally through the years, about my chronic 24/7 "head pressure" for 7, yes, seven, years straight. I've only just gotten insurance and I've only just gotten the MRI, the neurologist visits, and so on.This neurologist tends to think my head pressure is a "chronic daily headache with some migraine features. ("Some Preliminary Questions." How did you arrive in the office of a Neurologist? Was this the first stop? Was this a referral from the PCP? Did you see an ENT? Truly, dude, from the limited description you’ve just provided, nothing jumps out and screams ‘Migraine”. Chronic 24/7 ”head pressure” for 7 years, the first thing that comes to mind is ‘Chronic Sinusitis’. Motion sickness is not a definitive sign for migraines, nor is waking up with tingling and “weird grainy vision”. And regarding MRIs and MRAs, they’re not exactly diagnostic regarding Migraines.)


… The next part of the plan, after the initial six days, is to take--AS NEEDED, so I suppose it's optional? (”As Needed” does not mean that something is ‘optional’; “As Needed” means ‘as necessary’.)


…Has anyone here had experience with Topamax, if so, good or bad? What about the poly-drug use plan? (Welcome to the world of polypharmacology. Get used to it. To date, one giant ‘super-pill’ that eradicates all symptoms for all patients hasn’t been invented. Ssssoooooo… The Medrol is a steroid prescribed to alleviate inflammation. Skelaxin is a medication that prevents muscle spasticity. Your neurologist is hopeful that the regime of Topomax will work as a migraine preventive. [A Preventive is something that helps keep your primary problem in check; the premise is ‘prevention’ will greatly reduce the necessity of stronger, more potent medications. Stronger, more potent drugs generally are more toxic and have greater, unpleasant side effects.] Relpax is a newer tryptan; tryptans work by aborting migraines, once they’ve already begun. [This is why your Neurologist wrote “As Needed”.] Lastly, Compazine is being used as an anti-emetic, if vomiting is a component of your migraine symptoms. Once you’ve experienced one of those migraines that insidiously creeps up the back of your neck, drags the pain over to your temple, then, with every beat of your heart, your head throbs in cadence with your pulse, till you’re certain that IF ONLY your head would explode, you’d feel better… But it doesn’t, and you don’t…Now, you’re so sick and nauseated you throw up. Right where you are. Because it hurts WAY too much just THINKING about moving towards the bathroom. Hell, your head just detonated from the movement of vomiting. And now, the harsh, bright light sears through your retinas… No need for me to go on about noise and smells; this is a good enough description of how a migraine begins. Anyway, after you have THAT migraine headache, it’ll be up to you to decided if Relpax is ‘optional’.) 


…Topomax, anyone here have any experience with it? has it been safe and effective for you? (To re-iterate, there is no one perfect super-pill that amazingly cures every patient’s every problem. Expect that you and your neurologist will experiment with 8 -10 medications, AT LEAST, till you find a good mixture of chemicals that are effective for you. Everyone’s different; that’s why there are over 20 different tryptans, numerous anti-spasmsmotics, and countless, unique AEDs manufactured.)

…I'm typically very skeptical about the so-called safety of taking any drug, but now I've gotten several of them thrown at me, some of them to be taken 3 at a time. I suppose there is no other way to treat "chronic daily headache" but I'm not sure if I have the courage to go through with this plan, seeing as I'm easily bothered by side effects. (Again, it’s completely your decision. If you’re more easily bothered by potential side effects and don’t have the courage to ‘go through with this plan’, by all means, DON’T. Don’t take the medication and no need to further trouble the neurologist. The simple solution is to continue enduring the “Chronic 24/7 Head Pressure” that you’ve tolerated the last 7 years.)

…I've read that Topamax withdrawal, if done too abruptly, can cause seizures in people who never had them before. That scares the hell out of me. But once again I have no choice but to take this crap. (NO. No. No. You have a choice at every single point. It’s all your decision. Is the Pain you suffer more severe than your fear? If yes, proceed. If not, discontinue treatment. It’s your call.)

… Here's something I wanted to know out of curiousity. Is caffeine a bad idea while using any of these drugs? (With few exceptions, caffeine isn’t a particularly good idea, regardless of useage with or without drugs.)

…Interactions-wise it is not contraindicated for any of them. However maybe there could be another reason to avoid it? The interesting thing is that while some people say caffeine causes migraines, others think it helps to relieve them. I notice it's an ingredient in Fioricet, another migraine drug. (FYI. Caffeine does not cause migraines. Chocolate doesn’t cause migraines. Red wine, sulfites, nitrates, and aged cheese do not cause migraines. However, all, or any of these substances can ‘trigger’ a migraine in a susceptible individual. And the amount of caffeine in Fioricet/Fiorinal is 50 mg; approximately the amount in a half can of Mountain Dew.)


…I'm a caffeine addict, so I just thought I'd ask, because I don't want to give it up if it's not mandatory. (You may not have to. Different triggers for different people… Just as with the medications that will eventually prove helpful, there’s a large amount of ‘hit-and-miss’ and ‘trial-and-error’. Physicians ‘practice’ medicine. Everyone’s unique. But don’t count on keepin’ caffeine around.)

EvilFluoescents: … I guess in your case stimulants based ADD drugs would not be advisable. As you probably know ADD is associated with a lot of co-morbidities. Namely, LD's, anxiety disorders  and migraine. (Also, bi-polar disorder;) Unfortunately, one of the possible side effects of amphetamine derivatives is headache and migraine.

My guess is that prior to the addiction episode, your brain was already "primed" so to speak for migraine. It is possible that the stimulants just pushed it over the edge. It is also possible that you simply happened to grow into them during that time frame.Topamax is the newest of the first line migraine drugs. As it is an AED, it also has mood stabilizing properties. The combination of the factors, is probably the reason both docs are recommending it. (Mood stabilizers also help balance the ‘ups-and downs’ of bi-polar disorder. [Which reduces the depression, which creates the anhedonia…])

…I just picked up the prescriptions today. Looking at the package inserts for all 3 of them, it really hit me how scary all of this is. It's just too many pills to take for the first six days. (Dude, you were a recreational speed freak, and now you’re psyched out by 3 prescription medications, none of which is stronger than a schedule II, III, or even IV? And you’ll be taking two of the medications for LESS THAN ONE WEEK!! You’re not heading for ‘The Lost Week-end’… Pretend those six little, bitty, teeny, tiny white Methylprednisolone tablets you’ll be taking the first day aren’t six pills at all.... Just one regular size pill that got broken into teensy weensy pieces. Don’t get wrapped up in the numbers…)

…Do you think it would be okay if I slightly modified the plan.. instead of taking 3 different meds for six days.. just to take two? Just Medrol and Topamax... and I'll try the Skelaxin later on? (If you choose not to follow your neurologist’s medical advice [after having lied to her about the amphetamine addiction], then please don’t assume that anyone here, on an anonymous forum, who has never examined you, could possibly provide better counsel… Medrol and Topomax are the wrong combination of choices. If you’re hell bent on not following sound, trained, medical advice, ask your pharmacist/nurse/local drug dealer about Skelaxin and Medrol…Try pairing those two. If you don’t even know what the drugs do, how can you possibly expect to reach any rational conclusion regarding which 2 out of 3 drugs to combine?)

…If I was to follow her plan to the letter, I'd have 3 drugs that cause drowsiness in my system, Paxil, Topamax, Skelaxin, who knows what that would do to me. Probably I wouldn't be able to stay awake for more than 7 hours of the day, and I'd be useless from all that "zombification." That doesn't even factor in additional side effects. (When you started following your 'amphetamine abuse plan’ to the letter, who knew what that would do to you? Probably keep you awake for days at a time, stop eating, hallucinate a little, become paranoid a little… How ‘useful’ would you be from all that “hyper-stimulation”. BTW. Were you taking Paxil during this time, or was that the result of the speed binge? Seriously.)

…Do neurologists even consider the well-being of their patients when prescribing drugs? (Do Dumb A**es even consider their own well-being when deciding to self-medicate?)

...I know no one here is qualified to give me advice.. but I just want your thoughts about this? (I will resoundfully state that I am not qualified to give medical, legal, or financial advice… but, I just want your thoughts about this reply.)

…I'm very apprehensive about taking new medications so I only got around to starting today. At this point I've taken 4 of the 6 medrol pills, and one Skelaxin. I'm supposed to take two but I decided just taking one to gauge the effects. I would say there has been no change in the head pressure at all, if anything it has been worse. I also noticed an "actual headache" after I took the first 2 Medrol pills. Also, unusual stomach upset and nausea throughout the day--I don't know if it's more from the steroid or the muscle relaxant.
(More Questions. What’s the difference between the ‘Chronic Head Pressure 24/7’ that you initially described as being your primary problem and this “actual headache” after you took the first 2 Medrol pills? Was the difference in pain intensity? location of pain? Were there sharp, stabbing, discrete sensations with the “actual headache”, opposed to the ‘Chronic Pressure’ sensation of the past 7 years? What was the time span of the “actual headache”? How long did it last? And how soon after taking the first 2 Medrol pills, did the “actual headache” begin? Regarding the ‘unusual stomach upset and nausea’ throughout the day, how can you be SURE if it’s from the steroid or muscle relaxant, at all? What did you have for breakfast? Anything new, different? How much did your water intake increase, to offset the possibility of developing kidney stones? Any anxiety, fear or apprehension about finally beginning treatment for your chronic problem? Anxiety, fear and apprehension sure can cause an upset stomach, and nausea, throughout an entire day.)

…Maybe I need the second dose of Skelaxin to notice benefits, but I just didn't detect anything positive about it. An hour after taking it I noticed mild drowsiness and "just feeling weird and unpleasant" for a few hours, and little else. There was also a very demotivating feeling of just wanting to sit there and stare at the wall, as if nothing was worth doing. My conclusion is that taking another one of these would ruin my day, and I just can't tolerate that. (Why do you think taking medication in its prescribed form, to treat a legitimate medical problem, would ‘ruin your day’, but more importantly, what is causing you to feel that you ‘just couldn’t tolerate that’? Sincerely, the latter is a question that deserves an hour’s worth of discussion with your psychiatrist.)

…So, day one is a letdown. When can I expect some of the beneficial effects to kick in? (Realistically, you can expect some beneficial effect anywhere from 3 to 6 months, up to 3 to 6 years. You’ve had this problem for over 7 years. It will take some time to notice improvement.)

...The neurologist said I would to go through the entire Medrol dosepak before I can notice one day of improvement, but even then that improvement won't last, which is why I'm then supposed to start Topamax as the core drug. Any thoughts? (It’s going to require both time and patience to resolve your medical problems. Having endured it for 7 years, I can understand your desire for it to immediately go away once you've begun treatment. But it just doesn’t work that way. Focus on other things you can change right away. Start a new exercise program. The endorphins will make you feel better almost straight away. Concentrate on putting only healthy things into your body. This is as good of time as any to stop drinking caffeinated beverages. Almost always, sugar [Lots of calories! Causes tooth decay!] or artificial sweeteners [Fake, harmful, unnatural, toxic chemicals!!] are used in conjunction with caffeine. Do positive things for yourself. Kick the caffeine addiction!! And with the money you save from no longer buying coffee, pop or tea, go indulge yourself in something pleasurable, maybe a massage, maybe a concert, maybe count all the wonderful things you DO have to be thankful for.)


…As someone with horrible ADD, I don't have the flexibility most people have, I can only stick to *one plan* at a time, or no plans at a time. Perhaps if I could get rid of the head pressure or so-called "migraine", I might be able to tackle other issues like ADD and executive dysfunction, but all I can do right now is one small step at a time in a very linear and predictable fashion. Otherwise I'll just have to swear off doctors altogether, and lose 100% of the progress and the money I paid to get to this point. (Dude. Stop it. Right now. The world is not all black/all white. It’s not an ‘all-or-none’ proposition. If you veer off your path, even just a tiny bit, you do NOT have to ‘swear off doctors, altogether’, nor do you ‘have to lose 100% of your progress and money’. Those are absolutely CHOICES that YOU GET to make. Things don’t just ‘happen’ to you. You were blessed with free will, and have the opportunity to use it any time you want. You are NOT a helpless victim. Don’t abrogate your free choice; self-determination and individual responsibility will take you a long way. Make up your mind to be positive, anticipate good results, and go kick the World in the Butt, till it ends up like you want it to; expect it to; deserve it to.)

…I think maybe following orders for once is the way to go, for a problem that now controls my entire life, on top of other things like ADD and learning problems. Long ago I also decided I don't have the discipline for the migraine diet or yoga--how many people do?--nor the patience to wait years to see if they work. (In your first sentence, you reference a problem that ‘…now controls your entire life.’ So, long ago, you decided you didn’t have the discipline for the migraine diet or yoga? If, in fact, your problem now ‘controls your entire life’, you may want to revisit your decision about not trying ANYTHING that can potentially help alleviate the pain you’ve had to endure for 7 years. Acupuncture, chiropractic treatment, massage therapy, physical therapy, botox injections all over your head, steroid injections in head and neck facets, ice packs… If the problem and pain are severe enough, yes, MANY people follow a prophylactic migraine diet and practice yoga. Regarding your reference to patience… you were ‘patient’ enough to wait SEVEN years with your chronic condition before you were able to obtain insurance, and the possibility of a reduction of your pain. If it takes 7 more years to achieve relief, what have you actually lost?)

I'm surprised no one else besides EvilFluorescents has anything to add here, though...? (Here you go; more information.)

...BTW, I hope you won't be offended by the overall "abrasive tone" of this post, realize that it's not directed at you, but just the frustration I have for my scenario... ([BTW, I hope you’re not offended by my overall ‘abrasive attitude’; it’s not directed at you because I don’t know you, but your ‘scenario’ sounds pretty f~*~*n' good.] So you have migraines; so you have ADD; so you’ve been a speed freak and have executive functioning problems… I haven’t heard you mention being blind from macular degeneration, or that you no longer have a right leg. I have migraines 3 to 5 times a week. They're so severe I vomit , and can’t move because of the pain. It hurts to breathe. I have ADHD. Try havin’ ADHD in a wheel chair because diabetes took your leg. And your eyesight. Major Depressive Disorder. And there’s a whole lot more crap in addition to that. But I live in America, and I have a doctor. My pity is directed towards those people in Libya, with no doctor, no medicine and no wheel chair. Or we could pity all those dead people that were washed away in the tsunami. We are so f~*~*n' fortunate, we should kiss the ground every morning when we wake up. Now, follow your Doctor’s advice, quit whining, and be more patient. It ALWAYS can be worse.)

 

Most sincerely,

No Whining!! 
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Post Edited (No Whining!!) : 3/28/2011 1:06:33 AM (GMT-6)

Posted 3/25/2011 4:17 AM (GMT 0)
Generally the only response I have to this post from "No Whining!!" is to ask, "were my posts really that offensive to you?"  I'm asking because not only does it seem you created your screenname after me, it's your first and only post, and it appears your only reason to be here is to respond to me.  Honestly, it makes me feel more than a little guilty to provoke someone so much as to do this.

I can understand that you have a much more difficult situation than I have.  But you took a lot of my comments out of context--I was replying to one specific poster in most of them, who seemed to be alright with my repetitive questions and naivety--so fair is fair and I have nothing to say here.  Explanation: My style is repetitive and literal, as a rule.  If you want me to say I've been a spoiled brat, if that makes you happy, then I agree.  But I feel as if anything I say to you from here on in--just like you've done in your "one and only post"--is going to be turned on its head, so I'll refrain.  It may not come as any surprise, but the type of people I choose to talk to *are* known for their bedside manner and some degree of tact.

Posted 3/28/2011 7:05 AM (GMT 0)
Holy Batman!!


(Caveat. The ‘Well-Healing’ forum site was discovered three days ago. Most certainly there will be many, many more posts on the board in the days, weeks and months to come. The only reason that “No Whining!!” responded to ‘Batman’s’ post at all was because of the query:)

…“ I'm surprised no one else besides EvilFluorescents has anything to add…? (So, “Voila”, NW!! added a few things. Someone had to be the first person to whom I replied.)


… I'm asking because not only does it seem you created your screenname after me, it's your first and only post, and it appears your only reason to be here is to respond to me…? (Addressing the Narcissism; the screen name was not created ‘just for you’. You are just not that ‘special'.)

 


…Honestly, it makes me feel more than a little guilty to provoke someone as so much as to do so much as to do this (Passive/aggression is so unseemly…) (Yes, but...)

…I can understand that you have a much more difficult situation than I have. (It ain’t about whose worse off. It’s not a contest. Everyone in the world has, or will have, problems.)

…If you want me to say I've been a spoiled brat, if that makes you happy, then I agree. (??? Stop it!! Don’t start with the ‘complying victim’ crap. “I’ll say anything, even if it’s bad, about myself, if it will make You happy, because You’re so much more important than me; I must appease You, always. And if I don’t, bad things could happen to me. You are strong, I am weak and unworthy. I can't help myself. Bad things just alway happen to me. I am so insignificant; I am so helpless. Everyone, and everyone else’s needs are more important than mine. I’ll just curl up in a ball for 7 years and live with the pain, try to stay out of the way and not say anything confrontational. That's all I deserve, really. I must deflect any good attention from myself. I don’t deserve it. I only deserve attention because I’m defective. Pity is all I really can ask for. There’s nothing I can do. I would rather have this pain that be confrontational wityh my doctor. I can't have her not like me She must like he. She must help me. I’m powerless. If you want me to say I've been a spoiled brat, if that makes you happy, then I agree.” WHY, why do you even think a thought along those lines? But WHY,Why in the world do you think you saying this to me, would possibly make me happy? Don’t play the suffering martyr. Re-phrase and re-think your words, before speaking or writing. QUIT apologizing. [Do you have ANY idea how self-defeating and HARMFUL that sort of thinking, simmering at a sub-conscious/pseudo-conscious level, for an extended period of time can be??] This may be an interesting ‘trigger’ of your migraines that you and your psychiatrist could explore.)

(In closing, Reiterations: 1] Follow your doctor’s advice. You make think you are smarter than she is, and you may be. However, you’ve not studied nor trained in a neurological specialty that requires at least 12 years, post secondary education and God knows how much more CME. 2] She knows much, much more about medicine than you do. If you and she have a personality clash/communication problem, find another doctor. 3] Be Patient. Be VERY Patient. Think in terms of 3 months to 6 months. The first 3 or 4 weeks on a new med is not enough time to fairly evaluate. At 3 to 6 weeks, about the only thing that will be happening is that you'll be experiencing ALMOST ALL the side effects. Weeks 6 to 10weeks, benifits start becoming apparent. And as time continues, you'll have slowly adjusted to the side effect [Many people are unaware of any.] You're on your way. But to expect to obtain theraputic benifits within 24 hours is as use politely descirbe it, {naive} Personally, I have another word for it. 4] Complaining about your situation doesn’t help a darn thing. Like my grandpa used to say “Sympathy? You want sympathy? Hell, half the people think they’re worse off than you, and the other half think ya had it comin’ to ya, in the first place.”)

 

(HOW MUCH POWER have you given to the various conditions in your life? You do NOT get to run away from that responsibility. With sincerity, print out this particular forum queries and all 29 responses and take them with you to your next visit with your psychiatrist. You don't need to take them to your neurologist, but your forum will make a wonderful spring board for countless topics from which you and your psychiatrist can choose.)

(But, “NW!!” must run; am not a practicing psychiatrist; am not into ‘pity parties’. You’re on your own. "No Whining!!" requests and desires no response/no reply.)


(Now, I’m off to the Lyme Disease Board. (And please, please don’t again be deluded; don’t read ANYTHING into the significance that “NW!!”s second post was to you.)

Most sincerely,

No *****ing, No Whinging, No Crying 

 

(The censor blocked the second word in the closing. It rhymes with pitch. And 'Whinging' is spelled correctly.)

Post Edited (No Whining!!) : 3/28/2011 3:31:47 AM (GMT-6)

Posted 4/3/2011 10:28 PM (GMT 0)
hey everyone,

Hope it's ok if i join u guys.  I have another thread "crazy constant head pressure" and asked a question there that no one has answered yet, or been able to answer.  Maybe you med. pros can help me.  I have not seen a neuro yet but i will.  My question is..... has anyone had the experience where they take something (ie. ib profen, tylonal, vicoden) for the pain/pressure and it makes the pressure instantly worse???  This kind of freaks me out.  I have not found one bit of relief in that dep.  I had been to the er and they gave me morphene and instantly my head was screaming.... had the scariest night ever and it took two days to recover from that.  My head pressure is 24/7.  Had an eye exam, no papalliodema.   I have had a normal ct but no mri yet.

Thanx

Brianna

Posted 4/4/2011 4:19 AM (GMT 0)
Hi Brianna,

Nothing comes to mind... I don't know what could be causing this. Tylenol (pain killer), ibuprofen (NSAID with several mechanisms of action), vicodin (opiate), morphene (opiate) have different mechanisms of action.

In other words they do different things to your body to give you pain relief. I don't know if there is some common biochemical pathway that they all act on at some point (this would be a good question to ask a extra thoughtful pharmacist about).

Do you have any problems with other types of OTC or prescription med, or is it only "pain killers?"

Please do let us know what the neurologist says when you see her/him.
Posted 4/4/2011 5:38 AM (GMT 0)
Hi,

Thank you so much for your response.  No I have never before had a problem with any med/pain med.  All pain meds have always worked in the past when I have taken them.  I know that this is directly linked to this head thing i have goin on.  For the past 31 days I have tried different things/pain meds to help with the pressure/pain and everything has instantly made the pressure worse.  It is really horrifying.  Great suggestion about asking a pharmicist tho, thanx i will do that for sure.  All I know is something is a for sure malfunctioning big time in my brain.  Before all this I was functioning normal and my body reacted normally to everything.  It really makes me fearfull that this could mean there is nothing even a neuo. could do to help.  It seems like the stronger the med. the worse it makes my head feel.  That's been the experience so far.  I even got the strongest ant-infammatory shot at the docs and it just made all the pressure in my head move around really weird all day (like a water bed feeling) but it didn't lessen the pressure.

Thank you so much

brianna

Posted 4/6/2011 6:10 PM (GMT 0)
Hey there EvilFluorescents, I do all right on the 400mg of Topamax. No complaints so far. I don't wear makeup at all unless I have too. In short, pictures or major family functions and none of those are often enough so I don't wear makeup too much to notice problems for triggers with migraines. Sorry for the delay in replying. Been in hospital with bronchitis.

I don't think scentless lotions or soaps trigger migraines for me, but they do cause irritations for me in private areas and cause infections. So for soaps I'm using Dial Body Wash antibacterial since my body tolerates it and my face tolerates most soaps and for lotions I use Vaseline Intensive Care period and nothing else since anything else and I start itching all over. I really should visit my dermatologist and get this sorted out for good. Usually a course of Difulcan and I'm good. Oh for my make up I try to use Allmay, sensitive skin ha ha, but I am cheap and end up getting Maybeline most times. I need to update my make up and will be buying Allmay.

Too much computer use as a trigger?!?! Oh don't say that.... I live for the computer and internet... I'd die without it.
Posted 4/26/2011 7:06 PM (GMT 0)
Hey there,

I asked a phamacist about all the different pain meds possibly operating on the same neour path (everything I take makes it worse) and she said no.  I have no idea, it's pretty scary.  I go to see the neourologist next thurs. and im not looking forward to it.   

Posted 4/26/2011 11:33 PM (GMT 0)
Have you considered that they might be rebound headaches? I cut completly all tylonolol, advil and unfortunetly most triptans (will take them rarely) despite the fact that I have chrnoic daily headaches....because it would make them worse. Have you tried Naproxyn (Aleve)? Doc prescribed me 500mg to take as needed and it worked welll.
Posted 4/27/2011 11:42 PM (GMT 0)
Hi,

I wish rebound headaches was the problem.  within the first two weeks of coming down with this thing I stopped taking anything at all.  I noticed that everything was making it worse so I stopped.  I stopped drinking coffee after 3 days of the pressure and I have now had the pressure for going on 9 weeks.  There is no chance it could be a rebound thing cuz there is nothing to rebound from.  The only things that I had tried were tylonol, ib profen, vicoden, and then the morphene they gave me at the ER.  Everything made it significantly worse instantly, not when they were wearing off.  I don't really want to try anything new either cuz I am no longer in the mood to have worse pressure.  Im a huge chicken now when it comes to trying something else.  I am just trying to sit tight until I hear what the neouro has to say.  My pressure never stops.......I really don't think it's headache, although I hope it is only a chronic headache situation and not something worse.  I am kind of relieved to hear there is someone else out there who's pain was made worse with some pain meds.  I am really worried about that, feeling like there might be nothing out there I can take.

Thanx

Bri

Posted 5/6/2011 4:19 PM (GMT 0)
Hey Kathy109,

So I tried Naproxyn (half of a 500mg) and it didnt make my pressure worse.  It didnt make it better either but it's good news anyway.  I still have not tried a muscle relaxer even though I have prescriptions for them.  The naproxyn did make me very sleepy and it never did in the past, before all this head pressure.  Really don't know what to make of that but my husband says when he takes it it makes him somewhat sleepy.  I went to the neouro and he ordered blood tests and an MRI so it is still a waiting game.  THIS IS FOR ANYONE OUT THERE........ HAVE YOUR THYROID CHECKED!!!!!!!!  It's just a blood test and dysfunction in the thyroid has been linked to increased intercranial pressure. I have done a lot of research and have found this to be very true.  My neouro. ordered a test for that.  Hope this info. helps someone out there: )

Brianna

Posted 5/6/2011 5:48 PM (GMT 0)
At least it didnt make your pressure worse I guess... All i know is that Naproxyn is the only safe thing for me right now. I started Topamax for the chrnoic daily headaches. After your mri and all that maybe you could discuss preventativess ? Is that an option for you? I know how horrible it can be to have pain every day. I am universtiy student..plus I am studying therapy and I am constantly helping other people, sometimes we need our own support too :)
Dont give up, thats all I can tell you..and i know its easy to say but you will find something.
Posted 5/7/2011 1:44 AM (GMT 0)
Thanx for the encouragement : )

I have had a pretty emotional day today.... I really do feel like giving up and I feel I am not strong enough to handle this along with 3 kids under 5 yrs. old.  This is the worst thing I have ever gone through, and I used to live with a different condition for 4 yrs. that was constantly very painful!!   Does your pain ever stop completely?  I have not had one sec. of relief since this started and it's hard to sleep too.  I just want one sec.........

I don't know if preventatives would be an option for me, but if the doc. says it will help then I would be willing to try.

thanx so much

brianna

Posted 5/7/2011 4:27 AM (GMT 0)
My situation was quite special. I had been dealing with migraines for the past 6 years. Then all of a sudden they became extremely worse in the past 2 years. In the last 4 months, I went every single day with a chrnoic headache (24 hours on 24) while going to class and internships and work). I dont know how I did it, i cant imagine being a mom like you while having to deal with such pain, no one should have to go through such a thing. The tylonol, advil, and especialy Triptans were making my situation worse as they cause rebounds and if you read on it they are horrible and you should try to elimante them completely. That is why i now stick to Naproxyn. I have been on topamax officially for 5 days now (this is a preventative) and it has been godsend for me up to now... I have not had any pain...no headache whatsoever. Its so nice to finally be able to get up and do stuff that I have always wanted to do.. Discuss them with your doctor, they may change your life.
I am really sorry to hear that you have not had a pain free moment yet...as i have mentionned before, i encourage you not to give up. You will not be like this forever and you will be able to control and manage your pain by identyfiying triggers and by taking certain medications. It takes time but it is possible. Rest as much as you can and on the days you can get your kids off of you for a few hours take them to think about yourself and rest.
Posted 5/7/2011 7:19 AM (GMT 0)
I have been back on Topamax 25mg for 5 days now and I don't think it's done a thing for my head pressure, except for a bit of stomach upset and some occasional drowsiness.  I wish I could respond much faster like some here have reported.  But I've heard sometimes you may even have to get beyond 100mg per day to notice benefits.  And of course, sometimes you may get no benefit from Topamax at all.  I want to be optimistic, though.
Posted 5/8/2011 6:54 PM (GMT 0)
Hey Kathy and Batman,

So just to be sure I want to ask again Kathy....... When you would take tylonol and stuff, it was a rebound headache that made it worse?  Like after that medication was wearing off or completely out of your system?  Because my pressure increases within 30 min. of taking any medication.  It increases while the medication is supposed to be making it better. When the medication wears off my pressure decreases, although it takes longer than usuall.  Like after they gave me morphene in the er it was immediatly worse and then it took me 2 days to recover from that.  I just wanted to know if there was someone out there with the same exact issue.  Pain meds. making pain instantly worse is scary.  Even the neuro. looked at me like I was a freak.  When I drink liquids, espeacially something warm it increases my pressure.  He again, looked at me like I was a freak. 

So Batman.... you decided to brave the meds!  I really hope it works for you.....Really! that would be awsome for you.

Everyone out there is in my prayers

Brianna

Posted 5/8/2011 9:36 PM (GMT 0)
yes, exactly. It is called Rebound headhaces. And the ER will give you pain meds...making it worse fro you. Your body is like addicted to the stuff and so you have to stop...and your best bet is to do it cold turkey. And thats why Naproxyn is good beacuse its a longer lasting pain med and doesnt ahve that rebound effect. I still have headaches every day...but the pain meds were making it worse.
Posted 5/8/2011 9:38 PM (GMT 0)
This is very interesting material you might want to read:
http://www.webmd.com/migraines-headaches/guide/rebound-headaches
Posted 5/9/2011 3:36 AM (GMT 0)
godheals,

Just to be certain, is there any medicine used for pain and/or headache that doesn't make your pressure worse?  And I'm just curious if caffeine makes it worse or better?

The other question I had, for anyone here who might know, is if any migraine preventative drugs can reduce rebound headaches?

Posted 5/9/2011 9:04 PM (GMT 0)
Hey guys,

Well, I'm not quite sure im being totally understood, but it's ok i will try again.  I have not taken anything at all since the first couple weeks this pressure started (and it's been 10 weeks).  Even then, I only tried to take something for it a few times.  I was not contstantly taking something before or after the pressure started so I know my body was not and is not addicted to anything.  I have been off of trying anything for about 8 weeks except for the naproxyn I tried a couple days ago.  The few times that I did try something..... The pain med. made it worse as soon as it kicked in not as it was leaving my system.  I was just trying to find someone who might have gone through the same thing.  I was perfectly fine before this pressure, and on no type of med. , and only tried a few things a few times and that's including the morphene at the hospital.  tylonal and ib profen was one day, vicoden a different day, excedrin a different day, and then that morphene at the er another day.... the anti-inflammatory shot at the doctors office didnt make it worse it just made it feel really weird.  All of this took place the first two weeks of the pressure as I was thinking it was a severe migraine or headache.  I don't think this is a migraine or headache now, I think it is more serious than that (although i hope not).  

I have been off any caffeine, alcohol, etc. since the first 3 days the pressure hit as I realized caffeine made it worse instantly! ( before i was even done drinking the cup) and I decided that alcohol is probably not safe to drink at this point.

So to make a long story short lol.......there is nothing out there that hasnt made it worse except maybe the naproxyn (but it didnt help either) and caffeine did make it worse...... im actually very fearfull that I have vasculitis : ( i pray that i don't .

You guys are super awsome and I thank you for all of your help, suggestions, and responses to all my postings.  Kathy109, I will definetly read the information on the sight you listed....

Thanx all

Brianna

Posted 5/22/2011 3:18 PM (GMT 0)
Hey Godheals/Brianna, It sounds like you’re saying you have a problem that started worsening about 10 weeks ago, and that your problem was pretty much characterized by an uncomfortable feeling of intense cranial pressure. For a while, for a few days, you didn’t do anything differently, you didn’t take any new medications or any pain medications. Maybe you thought it might just go away, kinda like it just showed up? But the uncomfortable pressure remained steady and after maybe a week or so, you decided to try something to make it better? Am I following correctly? One thing of which I wanted to be certain--- when you refer to Tylenol, I want to be sure you’re talking about simple, plain OTC acetaminophen. No Tylenol-IIIs, or even Tylenol-IIs, no Tylenol with any codeine in it; just ‘over-the-counter’, ‘bought in the United States' (and not Canada), right? As I’ve written so many times, every medication will have a unique effect on every patient. And it really becomes frustrating when that medication that’s worked so well for you in the past, no longer does. The questions about Tylenol, and whether it does or doesn’t have codeine in it is relevant, because codeine is less than a wonder-drug for treating migraines. A substantial majority of migraneurs who have taken pain medication with codeine (whether natural or synthetic, i.e. Vicodin) don’t do well; some, because Codeine has so many obnoxious side-effects (including nausea), and others, because yes, Codeine can be starting up your re-bound headache almost simultaneously as it’s attempting to reach a therapeutic level for pain relief, EVEN at the FIRST dosing with it. EVEN if it’s not been a problem in the past. Your own experience with Morphine is another classic result indicating that that Opiates are not very useful in the treatment of migraines.   On the other hand, if your leg has just been hacked into slivers with a machete, the morphine will probably feel pretty darn good, the ER doc will suture you up, and after a tetanus shot, you’re pretty much good to go.   THE FOLLOWING IS STRICTLY MY OPINION . If I have a bad migraine headache, the LAST place I want to end up is in a LOUD, BRIGHTLY LIT Emergency Room that SMELLS like Betadyne. I prefer cool, quiet, dark places that engage my senses as little as possible. And, as you’ve experienced, most ER docs are not well-trained in treating migraines. The most effective service that I receive at an ER is getting a bag or two of IV lactated ringers’ electrolytes back in my body to replenish fluids lost to vomiting, and a little Zofran in the IV bag to ameliorate the nausea. Regarding pain medications, I certainly don’t speak for all, but my experience is somewhat similar to yours’. At best, the drugs will have little to no effect, at worst…   One long-time standard for migraine pain relief is a medication that I’ve rarely seen mentioned in any of the forums. Plain old Fiorinal and Fioricette. Inexpensive and effective. (Both medications have identical amounts of butalbital; both drugs have an identical amount of caffeine [only 50 milligrams; less caffeine than a half can of Pepsi; the difference is that Fiorinal contains a small amount of plain aspirin; Fioricette contains an equally small amount of plain acetaminophen.) It’s a Schedule Medication and requires a prescript ion, but it’s not EVEN in the same league as Morphine, Vicodin, or Percodan. Another interesting fact is despite Fiorinal and Fioricette being potent Migraine Relief Pain Medication, if you were to take them after having a broken arm set, or an abscessed tooth removed, pain relief would be minimal to non-existant. Fiorinal and Fioricette work very specifically on migraines. Like all pain medications there is some risk for abuse/addiction. However, most Neurologists, and many FPs will prescribe them as part of your arsenal to deal with debilitating headaches. Lastly, a question was asked ‘if any migraine preventive drugs (Sorry---preven ta tive is NOT a word---medical, or otherwise) can reduce rebound headaches? Succinctly, “No.” Preventive drugs act via pathways to ‘prevent migraine headaches from happening’. They display no effect on the reduction of 'rebound headaches', a completely different phenomenon. I’m hopeful that after you receive the results of your testing and have the opportunity to review them with your neurologist, that you’ll feel much better and experience a great decrease in anxiety. Learning which few potential problems you may realistically anticipate is a much lighter burden than worrying about all the potential problems you’ve ever come across while searching the internet. Best of Luck, No   _*tch*n_, no whinging, no crying!!    
Posted 7/2/2011 7:20 PM (GMT 0)
Hey no whinning,

Well all my tests came back normal and I went to a second dr. who did not think I needed a spinal tap.  He believes it is a type of constant tension type headache issue.  I don't really have any migraine characteristics (not sensitive to light, noise, etc.).  I only feel nauseous (i think i spelled that wrong) lol when I have over done it in a day and my head hurts really really bad, but it's slight.  I think maybe I had a combination at the beggining, like it started with a severe migraine, but that wore off.  I just have the pressur/pain 24/7 and he has prescribed me topomax which I haven't started yet.  The medication that you mentioned sounds like it would also make my head worse as the slightest bit of caffiene makes my head worse.  Also you mentioned it has aspirin in it which also makes my head worse.  What sucks is even vitamins make my head worse.  The doc told me to try that migraleaf ( magniseum, vitamin b2, and feverfew) and I was in a world of pain all day.  I feel a gun shot might help lol but I have 3 babies who need me so no luck there lol.  Anyway, thanks for the response. 

Hey Batman,

Is your pressure gone yet?  I really want to know how your doing with the topomax.  Are there any side affects for you?  I hope not.  Pls respond and let me know

 

Brianna

Posted 7/2/2011 10:13 PM (GMT 0)
Hey Godheals, I know you asked Batman to reply... But i have been on topamax for 3 months now and i barely any side effects. I work 2 jobs, took a summer class and I am managing very well. My migraines have gone nearly all away. The only side effects I experienced is weight loss which is unfortunate for me, some tingling and pops that taste bad. That is it!!! :) hope it goes well for you.
Posted 7/3/2011 5:40 AM (GMT 0)
Godheals,

I got up to 75mg of Topamax daily, 1.5 months of daily use, and no relief of head pressure whatsoever.  I mentioned a few minutes of relief a while ago, but realize now it was probably wishful thinking.  I recently saw the neurologist and told her about the lack of improvement, she said I wouldn't get relief at 100mg if I didn't notice it at 75mg, so I should wean off.  That's what I've done.  Thankfully I'm off Topamax and those aggravating side effects are going away.  I felt very apathetic while on the drug, no motivation for anything... so it's good to see my usual self coming back.  If the drug relieved my head pressure I would gladly put up with those effects, but it's not worth wasting more time, even the neurologist said so.

Now the doc wants me to try Depakote instead.  If that doesn't work, she said I could think about trying Botox in the head and neck, as it has recently been approved for chronic headache.

Posted 7/4/2011 6:57 PM (GMT 0)
Hey

thanx for the respone everyone: )  Kathy, I'm so glad that topomax has worked so well for you!  That's awsome!  Everything I've learned about the drug is that it's a gamble, every person is different.... that's the downside I guess.  I have been on forums specifically for topomax and half the people love it and half of them hate it.  I am going to start on it soon but I do fear the lack of concentration, focus, and memory as I am a wedding planner and have a lot of details to remember and think of on my own.  Also meetings with vendors and people to talk to on a daily basis, but I still got to try.

Batman, I am so sorry to hear it didnt work for you.  I'm glad to hear you're not giving up though.  Botox!  That sounds intense... I can't believe it has proven to work for headaches!  Although I am still not convinced that people with pressure are the same as people with head-aches.  I think they are totally diff. and that's why nothing is working for head pressure.  I really think it is something else doctors are just unable to figure out, but I do believe it is something that can be found out.  Maybe not with our technology so far but one day hopefully.

Prayers to you all

Brianna

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