Doc's Cluster Headache Journal

Monday, September 29, 2008

Topamax Possible Side Effects

After several weeks on a higher dose of Topamax I am feeling a collection of problems that compelled me to finally call my doctor and see if these could be related to the drug. Now if any doctors read this, pleas note that these symptoms have been going on for weeks, but it is very hard for me yo discern what is "new" discomfort because I don't fell well most of the time... I have been generally tired and have had body aches for example since I was in my 20s and I am almost always suppressing some kind of headache pain. On top of that I simply don't like to complain... If I complained about every ache and pain I have The bitching would be constant and annoying as hell to those around me. So I have trained myself to hush my mouth and "take it".

You may need to understand these traits about some people you give medications to... I am sure some of you do, but in case I catch the ear of someone who had not considered it I thought it was worth explaining.

Drug manufacturers might want to make a note as well... if you actually care. (Yes I am sorry, I see you that way. Please prove me wrong.)

Here is the list of things I have noticed that seem to be going strange with me on my current dose of Topamax:

1. Numbness and or tingling in face, hands and sometimes feet.

2. Muscle aches, pains and weakness. Mostly in the hands but also in the feet and legs

3. Urge to cough when I draw a deep breath.

4. Cloudy urine

5. Strange and unpleasant taste/smell in mouth and nostrils

6. Unusually weak and tired ( I believe more so than before dosage increase but hard to gauge)


1. Numbness and or tingling in face, hands and sometimes feet.
I had something similar to this before starting Topamax that I believe is just a natural occurrence in me. I am referring to them as "Sleep attacks" my legs and arms get "weak" and "numb" and I feel like I can't move them and I am in a strange half asleep state. much like sleep paralysis. these seem to happen when I am in the low points of my modern headache cycles.

At first I thought the Topamax was just "smoothing" these out and making them occur at weird times and feel different. Now I am not so sure. They are similar, but now I am wondering if the Topamax is not triggering the thing that used to only happen once and a while "naturally" and therefore changing the nature of it.

2. Muscle aches, pains and weakness. Mostly in the hands but also in the feet and legs
Dunno...Is this related to point 1?

3. Urge to cough when I draw a deep breath.
This really freaks me out, I swallowed a pill wrong a few weeks back and honestly I though thats why I have been coughing... but its been weeks now. I don't seem to have any raspyness or flem... and that actually makes me MORE worried.

4. Cloudy urine
I started taking this pharmaceutical quality fish oil for my high triglycerides and I though that was what was doing this so I cut it out for a week and it seemed to get better but then I saw a cloudy batch... I didn't suspect the Topamax until I reread the side effect warnings and connected the dots about kidney stones. I just want to know if this is what is doing it so I can relax and drink tons of watter... I should be any way I guess.

5. Strange and unpleasant taste/smell in mouth and nostrils
Once again I thought this was all because of the fish oil... but I think its BOTH! I am a super taster and this may be a problem for me. Its really annoying, it almost makes me feel ill to have the smell/taste with me all day. Sometimes its like burning electronics.

6. Unusually weak and tired
Like I mentioned, its hard for me to gauge. But, I believe I am worse off than before my dosage increase. I feel pretty crappy as of late.

But of course then there is the big question...

"How have your headaches been doc?"

Not bad... modest pain, manageable, mostly brought on my sleep. If I sleep I hurt... Classic for me. But the short story is that nothing has peaked above a 3-4 since I have been at this level of medication.

My doctor discribed this class of medications as "throwing a blanket over the headache". I would modify that by saying its like throwing a wet wool blanket that sort of stinks over two fighting demons that want yo beat the crap out of your brain and that each increase in dosage is like another smelly old wool blanket that you use to try to block the sound and pain of the fighting demons but also makes it harder for you to walk around normaly and hold your head up like a person without a stack of stinking wet wool blankets wraped tightly around your head.

So at those levels of pain I could function pretty well... IF i had the energy and didn't feel like crap in OTHER ways *sigh* Thats always the story I can trade the pain for side effects that are almost as bad as the pain... and in some cases may be dangerous.

The sad truth is that as much as they hurt like hell, If you are used to them like I am, even the worst clusters can't really hurt you if you refuse to hurt yourself... the medication on the other hand just may blind you or worse.

Please read and be aware about this happening in a small number of Topamax users.
Topamax and Another Acute Glaucoma Attack - Almost.


  • Hello,
    We discovered your blog about three weeks ago. I posted a comment on your "State of my Headache address" blog. Sounds like our headaches have many aspects in common. My dr recently put me on Topamax & I'm experiencing many of the same side effects you described, though I didn't link them to the med. Because I'm having such a difficult time adjusting to the med (STILL having dizziness after being on it for about 4-5 weeks), she's keeping me at a low dose of 25 mg each morning & 50 mg each night. Eventually I'll take more, but not until the dizzy spells go away.

    About the numbness & tingling....Yes, I've had bouts of that off & on for years also. (Ref to the "sleep paralysis" comment previously.) I had major surgery within the last year & following that began to have numbness in one leg. The doctors said it was not related to the surgery. I believe them. The numbness continued to get worse gradually & then spread to the other leg, now is in both arms. It's not just numbness, but tingling...a sensation of walking on very painful needles. Sometimes it feels as if electricity is pulsating through my arms & hands also. It's very strange & disconcerting! Anyway, the dr doesn't know why it's occuring, so she's ordered some more tests. But I'm curious to do your symptoms compare? What types of tests have your doctors done & what have been the results? We're looking for a good "starting point" here.

    As to some of the other side effects you experienced, I've noticed similar or identical ones but didn't even consider the possibility of them being linked to the med. Thanks for posting. I'm going to mention them to my doctor when I have my follow up. Best wishes to you & your family as you try to find a cure & keep your sanity. :)

    Marie in KS

    By Anonymous Anonymous, at 10/02/2008 8:15 PM  

  • Marie,

    I am sorry I missed your first posting.

    I think we have some things to discuss and I wanted to respond. But I need to try to get to sleep at the moment as it is 4:35. I will do my best to put together a response for you sometime tomorrow.

    Here is the thing I found interesting... I also respond to my wife rubbing my arms and legs.

    More to come...


    By Blogger Murdock Scott, at 10/03/2008 4:39 AM  

  • Marie,

    In addition to my headaches I don't sleep well at all and I am under the care of a specialist for it. Now for a long time I thought this was partly because of my headaches... My clusters always came at 2-3 AM every night during a cycle. And I also came to think I was not breathing right.

    I have had 2 different sleep studies and the first showed I was breathing decently... a few years later, I got another study and did poorly enough to get a cpap machine... It has helped some but its clear that my problem is deeper.

    I started to recall that I slept poorly as a child. My sister reminded me that I would sometimes side under the table during board games and no one could wake me. Sleep walking, night terrors (sleep paralysis), Micro sleep during the day... I have experienced all of that. I am a mess sleep wise.

    Plus I just don't LIKE sleep, so I don't sleep much at night to everyones dismay. I don't think my sleep Doctor knows what to do with me.

    I can't help it, the more I sleep the worse I feel. If I sleep for 8 Hours, I wake up with a screaming headache AND I and exhausted. More and more I think the sleep disorder and the headaches are 2 parts of my problem. I think my doctors agree but they are not giving me firm answers... I don't know if this is because they don't know or that they don't want to jump to conclusions. (I have 3 doctors, A sleep specialist a neurologist and a general practitioner.)

    I think they are hoping to hit on a drug cocktail that keeps me functional and my pain relatively under control. After living with clusters all these years I have stopped expecting a "cure".

    Back in august of 2007 I wrote this about what I was experiencing at the time. You may find it interesting...

    "For as long as I can remember I have felt fatigued. I don't seem to have the energy that other people do. Recently I found out that I'm not breathing properly while I sleep. Dr. Becker has been treating me for this with a CPAP machine and that seems to have helped some, but I don't feel that it's solved the underlying problem. I think I've always slept very very badly.

    Some time during this year, I've started developing a new and disturbing symptom, where I will spontaneously fall asleep during the day, and then for several hours I will try to get up but not be able to. I have feelings of weakness and fatigue in my limbs to the point where I find it very difficult to move. These days where I feel intensely tired and have these debilitating bouts of daytime fatigue often seem to come in between days of bad headache attacks. The pattern seems to be something like a long period of bad headaches, start to feel better for a few days, then have 3 or 4 days where I have the above described daytime fatigue, then maybe a day or two of feeling relatively normal."

    I know I wrote up a detailed description of the "sleep attack" but I am having problems finding it.

    Because of these "sleep attacks" I described above. I have been taking provigil and it has seemed to help. I still get what I think is a "muted" version, but there is no more of the flailing around on the floor trying to call for help but no words would come out... I had forgotten how awful that was. If I could get my wifes attention she could massage my legs and arms and bring me out of it.

    If daytime fatigue and drowsiness are a bad problem for you explore the option of provigil with you doctor. I can honestly say that I have had very little to no side effects and it has helped me a great deal.

    But of course I would prefer to know what is wrong with me and correct it so I would not need the drugs. I am not sure thats possible.

    If there is a collective name for what is wrong with me I don't know it yet. I have avoided mixing my sleeping problems with this cluster blog because in the past I saw them as separate things... Now that I get migraines as much as clusters and my sleep problems have only gotten stranger, I really think its all related to some bit of badly connected brain in my head acting up.

    This is the only post I have made that touches on the possibility of comorbidity

    As far as tests go I have had 2 CATscans that showed nothing dangerous but I wasn't allowed to have a MRI due to the bullet in my leg. (don't try to stop car thieves by the way)

    Please let me know it this information gave you any insight. Oh by the way I was born in Wichita and lived there for several years as a young man.

    By Blogger Murdock Scott, at 10/04/2008 3:37 AM  

  • Hi Marie, this is Doc's wife.

    I was wondering, is it that you have difficulty actually moving your arms and legs, or is it more that they are extremely tired? Before Doc started taking Provigil, his symptoms were so severe that he actually had difficulty moving and lifting his limbs; it went beyond just fatigue and more into the realm of some type of paralysis that came in short attacks lasting about 30-45 minutes... which we just realized is about how long a cluster headache attack lasts. Hmm, maybe this is not coincidence. We were wondering if it was the same for you.

    Have you found out what types of headaches you have yet? I'm not sure that the type matters in relation to the sleep issues; we think that whatever's going haywire in Doc's brain makes him susceptible to sleep disorders as well as headaches in general, as he gets clusters, migraines, and also "regular" headaches too.

    Since he's had sleeping disorders his whole life, as well as dyslexia and learning disabilities, I wonder if the headache attacks are an adult symptom of a problem that he's had his entire life.

    By Blogger Katy, at 10/04/2008 10:34 AM  

  • Hello Doc & Katy,
    In! Not sure how to respond. My headaches pale in comparison. Should I even be complaining? Eh, no...not after reading your experiences! I'm so sorry for what you go through!

    I'll try to answer all your questions at once. (No guarantees.) ;) I haven't had any sleep studies done. Went to a sleep dr about two years ago & the guy gave me the creeps. He diagnosed me w/ a couple disorders, but put me on some meds for totally unrelated issues, which of course only caused more issues. (Interestingly he told me its very likely I'll end up w/ narcolepsy within a few years. ??) As far as sleep "problems" go.....I don't know that I really have any? I've never been one to go to bed early, but am really working hard on going to bed early (aka by 10 pm) on a regular basis to see if that will help at all. Rarely do I wake up feeling rested though, regardless of when I go to bed or how many hours of sleep I do or do not get. We've tried a new mattress, comfy back support/covers, listening to soothing music, you name it. Nothing consistently helps me sleep or feel rested. I toss & turn all night. But I'm still able to function & live a normal life; for which I feel very blessed & grateful! Oh, & no sleep walking now, but a lot when I was a kid! Thankfully I was never one who wandered out of the house though!

    Katy, you asked about the fatigue in my limbs. Sometimes it's just extreme fatigue. Most of the time, though, it's just very difficult (sometimes literally does feel impossible) to get them moving. My hubby massages on my arms, legs, feet & spine to get me going in the mornings. It's not always the same areas that have problems each day. And it seems to come & go in phases - several weeks (or longer) of trouble with the feelings of paralysis in the mornings. Then suddenly a brief interlude w/ little or no problems. Very odd. Just like the headaches, we cannot seem to link the sleeping habits (or lack of them) or the sleep paralysis problems/cycles to anything. We've even kept a journal for months.....still at square one.

    I have recently had an eval w/ a cranio-sacral therapist & will be going to her for a few weeks to see if that will help. That therapist has had great success in helping folks w/ various types of headaches, so who knows?? Next month I'll be seeing a neurologist specializing in headaches to see what they have to say.

    Several thoughts popped into mind as I type....
    1) Just because you have metal in your body does not necessarily mean they absolutely cannot do an MRI. I do have metal "parts" & they were not an issue; but it was just a brain scan they did. (They even let me wear my jeans...which have metal. The tech said it all depends on who you get as to how lenient they are. The dr's office told me pretty much the same thing, too.) Perhaps that's something you could discuss w/ your doctors.
    2) Chiropractic care or massage is sometimes helpful. You've probably already tried it, but just in case.....
    3) Accupuncture....I've heard a lot of positive things about it, though have not personally tried it. May be something to look into.

    Thanks again to you both for your insights. Even if we're able to share one fragment of new info, that may be helpful.


    By Anonymous Anonymous, at 10/04/2008 11:16 PM  

  • Marie,

    A quick note, it may sound like I am really bad off but I would just say that I am very "in touch" with my headaches and the associated problems. I have gotten to the point were I deal with them pretty well. But I don't let things slide anymore... I take lots of notes and try to find patterns. Thats really what this blog is about, so I hope I didn't overloaded you with too much information. heh

    When you first posted I thought that the numbness, tingling & weakness in the limbs didn't seem as extreme as what you were experiencing. I had to remind myself how bad it had been before I started taking provigil on a regular basis.

    Its hard to know how much we are effected by these symptoms from reading each other try to describe them. It sounds like you may be thinking that my headaches are worse than yours, That may be true, or it may be that I just make mine sound worse. heh (I honestly hope you don't have clusters they are just a nightmare) but even if your headaches are more mild, I still think that our problems could very well be related. I am not sure the "kind" of headache matters as much as maybe a susceptibility to headaches.

    That is pure speculation mind you...

    I have not met anyone else that described a problem with headaches and weakness/numbness in the limbs so I find it VERY interesting and would like to continue to compare notes.

    I reilized I should have replied before now, but once again I need to try to get to bed. I will try to address some specifics tomorrow.

    Lots of interesting things in your post. : )

    By Blogger Murdock Scott, at 10/09/2008 2:59 AM  

  • Hi there,
    My headache types have not been specifically diagnosed yet. I seem to have at random all types of headaches, though I'm not sure that I have clusters. Sometimes I think yes, sometimes not. There's no consistency in the headache types, except that they are every day in various forms. Nice, huh? We are beginning to think it could be a hormonal imbalance. In a few weeks we go see a headache specialist, so that should be enlightening.

    After reading your post, I did some research on Topamax & realized that I have many of their listed side effects, including the serious ones. (Such as blurred vision & pain behind one eye. Have had that for three weeks.) So I called the dr & decided to stop taking Topamax. That was last Tuesday. The headaches are back in full force, but the side effects from the medication are mostly gone. Sometimes I still have numbness & tingling, but not as severe or often. Thanks for posting about that, as it did not occur to us (or the dr) that the things may be related.

    It would be interesting to know how many people in the world have chronic headaches AND numbness & tingling in the limbs. No way to know I guess. Very possible that there may be a connection.


    By Anonymous Anonymous, at 10/12/2008 7:57 PM  

  • Some points I found interesting:

    "Rarely do I wake up feeling rested though, regardless of when I go to bed or how many hours of sleep I do or do not get."

    I can sleep for 8 hours and feel worse than if I slept for 4 even if I have the cpap machine on keeping my airways open.

    Often times I feel that the more I sleep the more likely I am to get headaches. If I nap in the afternoon I am very likely to wake with a headache for example. A long nights sleep does not leave me feeling rested... most of the time it leaves me feeling fatigued and guarantees some type of headache pain for most of the morning.

    "Oh, & no sleep walking now, but a lot when I was a kid! Thankfully I was never one who wandered out of the house though!"

    As far as my sleepwalking goes, I have rearranged furniture (I placed a chair over me in the bed) and walked through my house and opened my back door, but I collapsed on the tile floor and thats how my wife found me in the morning. I almost made it outside!

    I don't seem to do it much anymore but I recalled recently that I almost never woke up in my bed as a kid for a long period of time. I was wandering and waking up in other spots in my room and even around the house.

    "Katy, you asked about the fatigue in my limbs. Sometimes it's just extreme fatigue. Most of the time, though, it's just very difficult (sometimes literally does feel impossible) to get them moving. My hubby massages on my arms, legs, feet & spine to get me going in the mornings."

    This really does sound like the thing that was happening to me before I started taking the provigil on a regular basis. I had though it was some extreme exhaustion due to my sleep problems but it was too weird and it went on for too long. Also It became clear to me that it was happening in the "lulls" to my headaches. it would be a round of really bad headaches, several days of ramping down from that then I would get hit with the extreme fatigue spells and sometimes the "sleep attacks" would come on in the early afternoon during a period when it would be common for me to get cluster attacks.

    I would get the urge to rest and lie down were ever I was and I would just go limp. It was really hard to move... like I would think about moving my arm and then several seconds later it might flop a bit. very disturbing.

    If Katy was home and If I could get her attention she could rub my legs and arms and it would be like she was bringing me back to life.

    Provigil has cut that down to a mild sleepyness and weakness in the limbs.

    Now... Does the Topamax trigger the same effect? OR is if a similar but different effect. I don't know.

    My guess is that since Topamax is "doing stuff" in the brain, it is "poking" at the thing that caused the sleep attacks in my to begin with. Perhaps causing a tug of war between the provigil to keep me alert and awake and the Topamax/Sleepattack trying to knock me out.

    All complete speculation, I am not a doctor... blah, blah, disclamer... blah.

    Bottom line is that I think if I stopped taking any medication I would go back to having headaches and sever sleep attacks like I described.

    Since my topamax has been reduced to 100mg per day I am felling much better in regards to the things I listed as possible side effects. including the numbness/tingling in the face and hands and being unusually weak and tired, things which I believe could be related to my "sleep attacks".

    So in certain people with sleeping disorders and a disposition to have headaches will Topamax trigger or exacerbate an existing problem that will cause more weakness in the limbs and fatigue?

    Who knows? But it sure is interesting!

    "It would be interesting to know how many people in the world have chronic headaches AND numbness & tingling in the limbs. No way to know I guess. Very possible that there may be a connection. "

    Very very interesting to me... I don't talk much about comorbidity on this blog because I feel like I would be getting in to the realm of trying to outguess the specialist and scientist but I have really felt for a long time that all my issues are somehow tied together.

    Learning disabilities
    Cluster Headaches
    Migraine Headaches
    Vast almost superhuman intelligence (OK, thats a joke)
    Fatigue since I was very young
    Strange sleep problems

    Possibly even questionably related issues like the fact that I have unexplainably high triglycerides yet my cholesterol and other health indicators are fine. It seems to be a genetic difference in me. My long time doctor once jokingly referred to me as a "mutant". I am not sure he is actually wrong.

    I think something is different in my head and doctors just don't fully understand it yet or how all these things might be related. I think that "brain difference" is possibly causing a lot of havoc.

    Having said all that, I am just a guy with a head that hurts a lot, and nothing I say should be taken as anything more than personal opinion.

    I hope there is something very "fixable" going on with you and that maybe it will point out something they have been overlooking in me. My Cluster Headaches are not supposed to be curable but if they find what is causing your issues It could very well be a clue to some of the other things that are going on with me and who knows, getting the other stuff under control might make me less susceptible to the cluster attacks.

    So, thank you very much for sharing this information, In a way, I count on people like you. Meeting people and hoping I can help them a bit gives me new strength to seek solutions.

    By Blogger Murdock Scott, at 10/13/2008 1:38 PM  

  • By the way, are you originally from Kansas?
    I was born in Wichita.

    By Blogger Murdock Scott, at 10/13/2008 1:39 PM  

  • Hi there.... I just wanted to remind everybody reading that headaches, migraine or cluster or tension or not just a physical thing but a neurological disorder. This is why I have hearing/sight changes and throw up with some migraines... my body has even caused myself to pass out so it would not have to deal with a intense migraine. All meds will have side effects... they are man made synthtic lab made chemcials. It will also take the human body weeks before it can remove the toxins that are left behind from the drugs we take. May i suggest taking a natural route if you can handle your pain for at least 40 days. Drink plenty of water and juices... stay away from refined sugars and process foods. Then start a new journal on how your body feels. You would be amazed how much of our environment and the things that are suppose to help us are really helping to make us a faster obituary. Take care.

    By Blogger Vaneesa, at 10/24/2008 3:36 PM  

  • Ps. Are you sure you have not had migraine issues? There are migraines that cause numbness on one side of the body (basilar I think) and as for the sleeping problem have you seen an ENT doctor for a deviated septum. I cant sleep either and when I do I wake up with a horrible headache... it's because my sinuses are sweeling so huge in my face due to my septum. My daughter hit me really hard in the nose about 4 years ago and I fell flat on my face when I passes out while I was pregnant with her. I just realized that if you look in the mirror with your chin almost up you can tell that my nose curves towards the left ( making the right side have deviated septum,). This septum theory was loked at y my allergy doctor and now I am going to see the ent next week. Speaking of allergy.... I had went to get a test ran to see ifi had any to any foods, etc that could be a trigger for my headaches. If you realize yours are more migraine than cluster you might want to see if insurance would cover an allergy test.

    By Blogger Vaneesa, at 10/24/2008 3:48 PM  

  • Great suggestions! I see a headache specialist soon & will add those to the list of questions to go over with them. Hope your ENT tests go well for you!


    By Anonymous Anonymous, at 10/25/2008 10:31 PM  

  • Vaneesa,

    I sure hope Marie doesn't have clusters! I would assume her pain is something else (migraines seem likely) until its determined for sure, I will be interested to see how the headache specialist she is going to see interprets them.

    I tend to think that migraine and cluster sufferers have more in common then maybe was once thought. I agree 100% that migraine and cluster headaches are a symptom of a neurological disorder. Clearly, the hap hazard but measurable effectiveness of anti seizure medications like Topamax and Depakote when used as preventives should tell us as that we are dealing with something going haywire in the brain.

    So I think the interesting thing is what you, Marie and I have in common. I don't know what the cutting edge research as far as "causes" (as opposed to triggers) of migraine and cluster are looking like, but I wonder if they will discover that it is a very similar problem.

    I wonder if you get your headaches on waking because the "bad sleep" is a trigger for you? I don't think this is far from what I experience. But maybe my "bad sleep" has a different cause. ( I have an appointment with my sleep dr, in a week or so)

    Thanks for the lead on basilar migraines, I had not heard of that before and it sure sounds like something I should look into.

    I am largely in agreement with you on meds. I have both clusters and migraines and the pain of each it unique and easily distinguished from each other. I can handle most all of the pain I have experienced from both types of headache. And that includes the worst of my cluster attacks, the pain of which I simply can not effectively describe...

    But Like you I don't like to take the meds... I never take pain killers, most of the time I don't even take aspirin/aleve/tylenol. I think you can tell from the tone of my blog that I mostly don't think most preventative medications are worth it.

    Over the corse of the 17 years that I have been dealing with clusters, there have been long stretches that I have taken no meds preventative or otherwise. I don't know if I can recommend that for other cluster sufferers though. The pain can be so brutal that there are other issues for cluster patients and people need to do what is right to keep themselves safe.

    Luckily my migraines are less of a problem for me but I am less "used" to them as I am the clusters because they have really only come on in force in the last few years. After all this time with clusters I know them inside and out and I am comfortable with weathering them free of meds. The thing that drove me to a new Neurologist and the current line of treatment was a migraine that lasted for 16 days solid. Thats 16 days 24 hours a day in pain non stop... It scared me into a new attempt at prevention.

    I am starting to see that new attempt as a failure. I don't know how long I will let this go on but I want to be clear that my normal way of dealing with my headaches is to accept them and not alter my brain chemistry.

    In fact, I have a line on a new neurologist that is less "med" based and even has some knowledge of alternative methods of treatment. I plan to at least talk to this person and see what they have to say.

    I like my current neurologist but progress is too slow and it so far has been a discussion of what drugs to put in me and I can't have that. I was hopeful at first and trying to keep an open mind because they are supposed to be REALLY good at what they do.

    But the truth is that I KNOW and have always known that, for me at least, medication is most likely not going to be the answer.

    Damn... 5:33am If any of this is incoherent I apologize. hehe

    I just made up a new rule, if I fall asleep at my keyboard I get a wish... I will use it this time to wish for us all to have a pain free day tomorrow.

    By Blogger Murdock Scott, at 10/26/2008 5:42 AM  

  • Hi Marie~
    my Name is Janyne and I was just reading this blog and happened across your comment.... I was wondering if you still had your numbness and tinglies in your arms and legs? I am currently on Topamax for treatment of a disease of the sympathetic nervous system called RSD or CRPS. (Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome). I am not a doctor... but the feelings that you have described are VERY familiar!! Check out the website and see if anything rings true to you, and/or google RSD. I'm here to help if I can....
    Good luck, and I hope you feel better!


    By Blogger Janyne, at 10/28/2008 1:13 AM  

  • Hi folks,
    Very interesting reading! Vanessa & Doc - so glad to know I'm not the only one who doesn't like to take any pain killers or other similar meds for my headaches. Doesn't seem worth it most of the time, though others just look at me strange when I say that. :/

    Janyne - I have never heard of RSD. Thanks for that lead. I quickly glanced at the website, but will definitely need to do some more research on it. Some of the symptoms I have, but some I don't. Certainly worth looking into & talking to the specialist about!

    This is very fascinating to compare notes. Thanks everyone! Hopefully it will help at least one of us, hopefully more! Take care. Chat soon....


    By Anonymous Anonymous, at 10/30/2008 9:24 PM  

  • hello . i have had cluster headaches for 15 years. i went to a neurologest recently and was put on topamax. i have had weird metal taste in my mouth. i cant eat. i also feel like i have electicitl flowing through my body. i get pins and needles in my feet heels.
    i cant remember my own cell number.
    the weirdest thing is that i want to cry. lol. and i dont cry. my wife is thinks im going crazy. this has been going on for 4 days.
    i also have had thoughts of killing myself. i have lost a lot of weight. not a big deal to me.
    but i cant eat.

    By Anonymous Anonymous, at 10/15/2009 1:42 PM  

  • another thing... the thoughts of killing myself were not as strong as they are from the clusters themselves.

    By Anonymous Anonymous, at 10/15/2009 1:47 PM  

  • the neaurologest i have does not know much abot cluster headaches. but he is the only one that takes my incurance. another thing is my sex drive........ im a young man.... this is not good. sorry i keep posting i just keep forgetting things that might relate. my memory is very bad right now. it was bad before but not this bad. i hope its not just me. if i stop using this drug will my headaches come back?
    i see the last post was from so long ago.

    By Anonymous Anonymous, at 10/15/2009 2:22 PM  

  • Anonymous,

    Its good to meet you and I am sorry we have this in common.

    Isn't it odd that you can post things like "the thoughts of killing myself were not as strong as they are from the clusters themselves." and I know exactly what you mean?

    I am betting I don't have to tell you, but in case it helps to hear it... Stay strong bud. I know what the pain is like and you are not alone.

    Let me first say that I would never tell someone that a medication would have the same effect for them that it has had for me. Tons of people out there will swear that if you just do exactly what they are doing than you will get some measure of relief. I don't believe that at all. I think that people respond to the available treatments very differently, So with that in mind we can compare our experience with Topamax and hopefully that will shed some light on how it is effecting you.

    As you may have read above I experienced a LOT of the same things that you are when they put me on Topamax.

    1. Weird metal taste in my mouth. (had that)

    2. feeling of electricity flowing through my body (yes, the feeling was hard to explain... but thats pretty good)

    3. "Pins and needles" in my feet (yup! it was really bad for me, painful and long lasting I also felt it in my face and hands)

    4. "I cant remember my own cell number" OK, this one is hard for me to address... I have learning "differences". I am dyslexic and some other stuff. I am USED to not being able to call up that type of information quickly. I hear a lot of people complain about Topamax making them "less sharp". I would say that yes, it did dull me a bit at first, but then I am used to compensating for that sort of thing so it may have not been as annoying to me.

    Then there is the emotional stuff... I remember being pretty moody. I think you should keep in mind that you are taking a drug that alters your brain chemistry. I am pretty "quick on my feet" emotionally. if I am taking a medication and start feeling odd... I can rationalize that I am just getting used to its effects. Be careful, keep in touch with your doctor they may want to adjust your dosage.

    I pretty much hated Topamax when I started it because it seemed to have so many weird side effects. And my doctors INSISTED that none of it was due to the medication. I complained and different dosages were tried and eventually a balance was found. I don't take much now at all. One 50mg at night and one 50mg in the morning... But who knows, I may have needed the larger dosages in the beginning to break my cycles before getting to drop down to a "maintenance" level I am on now. Thats pure speculation of course, I am not trying to give medical advice.

    All the side effects I mentioned in the original post are now greatly diminished or gone. The pain in my hands "flares up" now and then but it seems to be getting more and more rare.

    Maybe the Topamax is working for me, or maybe this is just a long lull like I have some times. I have tried so many things and it is the only thing that seems to "muffle" my attacks. It took a while to get used to the medication and to get the dosage right. I get mild attacks pretty randomly now but nothing I can't handle. Just the fact that they are random seems to imply that Topamax is doing SOMETHING.

    I know what a pain in the ass starting a new medication can be... Good Luck and don't be afraid to pester your neurologist about your concerns regarding the side effects.

    By Blogger Murdock Scott, at 10/15/2009 6:16 PM  

  • its really cool to talk to someone who can relate. this is a first. the topamax is working. im am in the most stressful situation of my entire life and am sure without the meds i would be dead.
    lol am a strong person.
    with the mood swings and the stress if a real cluster was added to the mix........
    i just might lose it.
    i cant really tell my Dr that. i am not good at talking to Dr.s

    im not on here crying. just venting a lil. i have to be strong for my wife and kids.
    i cant show her i am having problems.....
    i have to hold us together through this rough time.

    she has no idea..

    By Anonymous Anonymous, at 10/15/2009 6:42 PM  

  • Here is how I know you are a strong person...

    Anyone who deals with clusters for 15 years and keeps it together to any degree is pretty damn tough. No one but us knows how much strength it takes... How could they understand really?

    Hell I have been shot in the leg, and that was nothing compared to the pain of a bad cluster attack.

    I am hoping that your mood swings will calm down... BUT I really encourage you to mention it to your doctor. Like I said, everyone is different and its things like that information that help them figure out how much YOU need as opposed to someone else.

    Maybe you don't have to go into great detail with them. Just tell them that the medication seems to be having a negative effect on your mood and you wonder if adjusting the dosage would help with that.

    Don't mess around, tell your doctor the medication is making you feel weird... its probably no big deal to take it down a bit and it may work just as well... it did for me.

    You may already be aware of this message board but in case you haven't seen it, it has lots of people talking about topamax there. Apparently It works for some and not for others. Lots of discussion about side effects and dosages... I noticed that a lot of the people that seem to like it are on similar dosage to me.

    By Blogger Murdock Scott, at 10/15/2009 8:41 PM  

  • is pepsi and beer aver going to taste good to me again?

    By Anonymous Anonymous, at 10/16/2009 7:41 PM  

  • Not if you are mixing them. : )

    Kidding aside, the weird taste faded for me but it took quite a while. I don't notice it at all now.

    You can still drink beer? Thats lucky, any alcohol is a huge trigger for me. I still have a beer now and then even though I know it will bring on at least a mild attack, but for the most part I have stopped drinking.

    I am pretty sure some people think I don't drink because I am a recovering alcoholic. heh.

    By Blogger Murdock Scott, at 10/17/2009 2:05 AM  

  • I don't drink. it don't taste good to me anymore.

    On a better note life is looking better today. I still am having trouble sleeping. I did as you had suggested and talked t the Dr. about what was going on. He went on to tell me that it did not sound like the Topamax was what causing my issues.

    I had to cut it short with him because i was at work on my lunch break and couldn't take anymore time to talk to the Dr.
    He did however reduce my dose from 100mg at night back to 50mg before bed.

    When i had started i was on 50mg at bedtime for 7 day and 100mg at bedtime thereafter.

    i stopped taking the meds 2 days ago. tonight i will start taking 50mg again. and see what happens.

    By Anonymous Anonymous, at 10/17/2009 2:56 AM  

  • what dose are you on by the way?

    By Anonymous Anonymous, at 10/17/2009 6:25 PM  

  • I am glad you are feeling a bit more "up". You don't have to read much of my blog to find posts by me when I also needed to vent. No two ways about it, fate dealt us a very crappy hand.

    It's not surprising to me that the doctor said that it did not sound like the Topamax was causing your issues... Mine said the same thing... I sometimes I think that if a drug company has not admitted to a side effect yet, then doctors simply tow the line and repeat the information provided without considering other possibilities. Why the hell would anyone take a drug company at their word? But then, for all we know, if could only have side effects like the bad taste for a small sub set of people and they really don't know about it.

    I take 50mg at night and 50mg in the morning.

    Lets hope that the smaller dose has less negative effects and that it still keeps the attacks at bay. I feel like the reason I tolerate the topamax pretty well, is that I have been on it long enough for my body to adjust. Perhaps the same thing will happen for you.

    By the way, I have been talking to my wife and she recalls me being pretty moody when I started topamax. The more I think about it the more I remember strong waves of emotion and weird dreams. All that stuff seemed to calm down over time. Faster than the other side effects did.

    I suspect you are trying to stay anonymous, but you should make up a fake name, a nickname, or something for me so I will know its you if you post back in the future. I would like to know how the topamax works out for you down the road.

    By Blogger Murdock Scott, at 10/17/2009 11:47 PM  

  • my name is billy. i dont really care who knows, lol
    i went anonymous because i didnt have time to set up an account.
    i have been of the topamax for 4 days now. i am still getting a weird body tingly feeling which really sucks. it feels like i have electrical current running through me. i woke up this morning and felt like the devil was at the back of my head looking at my temple and left eye, saying "should i" ....

    i am waiting for the body waves to go away before i go ahead and start taking the topamax again.

    i think i was pretty happy on one 50mg pill at bed time. but i cant remember for sure.

    By Anonymous Anonymous, at 10/18/2009 11:03 AM  

  • hi,
    I am anonymous, only because I am at work & cant set up an account, but promise I will when I can. After suffering terrible headaches since a child, (I am now 43) I was finally sent to a nuerologist. This was after explaining to my Dr that in the throws of a headache, I pulled myself off of the floor & into my bed & laid there crying, praying to die as I didnt want to be in this much pain again..
    The headaches would be on a weekend & would start at about 4 on the saturday morning (I know it sounds weird that they always started at weekends, I think thats why my dr never took me seriously), BUT I work at a very stressful job & have a very stressful life & I think, just the "breath-out" & relax feeling on a Friday actually brang the headaches on.. I cant remember a weekend without one of these attacks.. I can honestly say, I really wanted to die... The pain was sooo sooo bad.. I would lay in an ice bath to try & stop the feeling of burning in my brain. BUT nothing ever worked. Anyway... I finally got to see a neurologist, who tried a "triptan".. Well at the first sign of a headache I was to take a pill... It did nothing & so 3 months & 8 headaches later I was back & he then prescribed Topamax.. (Reluctantly I might add!). I have to say, he ran through all of the side effects with me & also told me to research on the net & decide if I wanted to try them. Well, I have. I am increasing my dose. I am on week 4 & at 50mg in the morning & 50mg at night. I have a weird smell in my nose, a horrible taste in my mouth, tingling in my feet, pins & needles in my hands, I lose words, I am not as sharp as I was, cant enjoy coffee which is something I loved, cant really taste food very well, feel a bit "odd" most of the time, forget words & am generally "not quite right" & to be honest am the HAPPIEST WOMAN ALIVE TODAY!!!!!!!!!!!!!!! I have NEVER had 4 weeks with NO head aches EVER! I feel like I have been given my life back.
    I am sooo sooo grateful to this medication & will take all of the side effects, so I can spend a weekend with my children..
    So people, What I would say is.. Please put everything into perspective... I really have been given my life. xxxx
    Katherine - London UK

    By Anonymous Anonymous, at 12/31/2009 6:21 AM  

  • Boy do I concur with some of that. I am into 6 weeks of clusters and my Topimax taper had reached 4 pills before bed a night. Still getting hit with about 2 clusters a night and my feet go numb a lot now this year. Must be from the heavy amount of Topimax. Imitrex and Relpax never give me numbness. The bad taste kills your appetite and all smells are extreme and horrible. Feel really edgy too and sure hope my cycle ends soon. Gonna stop the Topimax

    By Blogger none, at 4/30/2010 4:11 PM  

Post a Comment

Links to this post:

Create a Link

<< Home