Doc's Cluster Headache Journal

Monday, February 25, 2008

Topamax-Depakote day 3

Still very disoriented, I am having less visual weirdness today but I still am having problems focusing my eyes and also putting together a sentence. I would describe it as having a thought in my head but not being able to find the right words to say it... very unnerving for me.

Headache for most of the day getting a bit worse in the afternoon and evning, cluster-ish in nature.


  • Hey Doc,
    13 years Cluster sufferer here. New cycle started 7 days ago while on vacation - typical post stress situational trigger, after almost 2 years in remission prior. My clycles usually last about 4-6 weeks so I'm gonna be useless 'til April probably.
    Anyway, 4th day on 60 mg topomax 2x daily for the first time. + I'm on a lot more drugs - and I'm hip to the mental focus challenges you note, I.E. making sentences and thinking. But the whole course of treatment IS HAVING A POSITIVE EFFECT ON THE HEADACHAES! Bottom line: I'm catching my headaches earlier, like within 4 minutes, and they're stopping escalation within about 15 minutes and backing off maybe 2 out of 3 times. THIS IS HUGE! BEST OUTCOMES FOR ME EVER! So while I'm walking around a bit dizzy , a little nautious, a bit tingly, a little muscle weaky and definitley mentally challenged - to trade it all for the dramatic lessening of 2 out every 3 cluster headaches is a slam dunk you betcha!
    Here's my whole whole course: 60 mg topomax 2X daily; 50 mg prednisone: 3 whole, 3 half but I'm almost all done here. 5 mg zomig inhaler as soon as I know it's coming, without hesitation. The zingers that wake me are too late I know but I snort the zomig anyway. I eat 2 alleve to lessen the zomig hangover. I grab the ice pack and press it as hard as i can from my eye across my head. I drink as much ice water as I can, especailly focusing on the most sensitive fillings. I pace. Boom. Sometimes the suckers are disipating!. Understand that in the past I have had virtually no success with hardly any course of meds! Maybe 1 out of 10 times in the past - but you hope you know?So either my body chemistry has changed some this go around - which doesn't make a lot of sense cuz I got another cycle that started - or the topomax, which is the only brand new component of my regimen, is tipping the scales for me. Whaddya think?

    By Anonymous Anonymous, at 2/28/2008 10:15 PM  

  • Dear Doc and all fellow sufferers reading along:

    I'm a 17 year cluster-sufferer. I'm currently somewhere in the middle of a cycle that started a little over a month ago, and the attacks only seem to be getting worse. This is probably the worst cycle I have ever had. It is definitely the longest. It's scaring me. I read about people having non-stop headaches for years on end. I don't know how they live. My heart hurts for them almost as much as my eyeball. I can understand very easily why people would kill themselves to escape these things, especially in that situation. With the way this cycle is going right now, I am very scared about the possibility of things getting worse and worse each year, until I end up with a headache that never ends. Kind of bringing religion into my treatment considerations, you know?

    This is the first cycle I have actually gone online looking for stuff like this blog. I have to say I really appreciate your taking the time to do this and all the other related projects you and your wife are working on. Reading your entries breaks my heart as much as it gives me a sense of hope. I feel very much alone when I'm going through these attacks, but after reading this blog and others like it I feel a little less so. Knowing that doesn't make the headaches go away, but I feel some comfort knowing that there are people are working on this thing.

    This is my first visit to this blog and so far I've only read the main page. I don't see any discussion of oxygen therapy. Have you tried this yet? My neurologist just started me on oxygen this week. The results: like everything else, it worked like magic on the first two or three doses, but since then the results have been mixed. Sometimes it still knocks the headache out within 10 minutes. Other times, the headache is completely unaffected by it - the headache even seems a little worse than before. It's important to note here that I am also on Depakote, Inderal, Imitrex, and Amerge. I will be speaking to my neurologist about it next week, but would be curious to hear of other people's experiences with it.

    By Anonymous Anonymous, at 3/07/2008 7:03 PM  

  • Hakimdaddy,
    Sorry for the lack of a responce. I am not feeling very well the last few days. Glad to meet you. Sorry we have such a crappy thing in common. heh.

    Sorry to about your headache free streak comming to an end. I had a long stretch of 14 months I think once and when it hit me again It was particularly crushing psychologically. I had started to allow myself to thing I was over them. :P

    That sounds like quite a cocktail of meds you have there. I wasn't aware that zomig came in an inhaler nowadays. I might hit up my doctor to try that. I really hope its the Topomax thats working for ya, I am still ramping up to a full dose, but so far I am not sure it is doing much for me.

    Please keep me posted on how effective you think its been for you. : )

    I am very sorry you are in pain, you know I understand just how brutal this affliction is. 17 years is a long damn time.

    This is the first cycle I have actually gone online looking for stuff like this blog."

    I am glad you took this step. Lots of people on the web with advice and information. Some useful, some not so much but most importantly I think is meeting people that understand what it is you are going through. No one who has never had a cluster headache could really comprehend what its like, we cant really expect them to.

    Stop by any time, I hope my ramblings offer you some small insight now and then.

    The picture on the front page of my blog is of me sucking on Oxogen. I would say It was pretty hit and miss for me as well. I have many many years worth of notes that are posted on this blog and the oxogen is mentioned somewere... heh. sorry I don't have stuff tagged like I should. Its on of my future projects. : )

    By Blogger Murdock Scott, at 3/09/2008 5:43 AM  

  • Hi there all, 2 year Cluster sufferer and a avid believer in Oxygen therapy. I found however, that you must use a nasal cannula not a mask and nothing short of 7-8 L of O2 will do the trick. I also use Topamax and Depakote for preventative medication. So far 100mg/Topamax daily and 500mg Depakote daily, double the dose during a cycle. Haven't gotten to that ugly suicidal place in a while :) hope it helps

    By Anonymous Anonymous, at 6/11/2009 1:21 AM  

  • 22 year sufferer here. I have had all the cycles you can think of... short, but severe... longer, but mild... long and severe...

    This year has been particularly weird. I normally only have a 5 to 6 week cycle on the long end. Also, my remissions usually last at least 6 months, and have had ones as long as 18 months. The cycle this year lasted about 15 weeks, then I went into a 3 week remission, and now they are back. Gotta love this demon of ours.

    I find oxygen therapy to work excellent... if I catch the headache early. My trouble is that I am a heavy sleeper and sometimes don't wake up until it's a full banger. I use Imetrex injections when O2 doesn't work and it at least seems to shorten them. A nose cannula does not work for me because my right nostril closes during my headaches and makes it hard for me to breath through my nose at all. I have to use a mask and I crank it up to 10-12 liters... as high as my regulator allows.

    Tonight, I took my first Topamax tab, and am very curious how it will work. I don't like the idea of taking meds all the time, but after this year, I fear longer and more frequent cycles. I was really hoping I'd grow out of them as I got older as many sufferers do, but I am now 43 and still waiting. My cousin suffered from clusters and committed suicide. My faith is the only thing that has kept me from it at times... and my family. I have no clue how people that have chronic and prolonged cycles do it... this one year has been more than enough for me!

    I do like to read other peoples stories and ideas. Weird... I wouldn't wish these things on my worst enemy, but I find it comforting to know I'm not alone.

    Keep the faith my friends!!

    By Blogger The Local Joe, at 10/07/2009 9:41 PM  

  • Joe, I am sorry we have this in common.

    I hope the Topamax has a good effect for you. 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... I don't even bother telling my wife about most of them.

    Maybe the Topamax is working for me, maybe this is just a long lull, or perhaps it's that I am finally "outgrowing" mine like you mentioned. I have had mine for close to two decades now, and like you, I keep waiting for this to happen. Yay for getting older!

    I didn't get much relief with oxygen myself and I had the same problem with waking up fast enough to catch the onset of the attack. Hell, I am so used to pain I can sleep through a level 2-3 cluster. Nowadays I usually wake in the morning every day to find I have been sleeping with migraine style pain (that started a couple of years back) so I think it would be even harder for me to catch them.

    By the way, my right nostril closes in exactly the same way you describe during my attacks. It shouldn't surprise me when cluster sufferers have so much similarity in symptoms... we know something specific is wrong with us... we are just waiting for doctors and researchers to fully understand it and fix us.

    I am completely with you about not wanting to constantly take meds, but I had to do something. My wife and I recently decided we wanted to have had a child and I can honestly say that a major reason I delayed it so long was my clusters. I have lost so much of my life to them it was time to go on the offensive again... even if the Topamax isn't perfect, knowing that this class of drugs had an effect for me made me bold enough to agree to fatherhood (a little hope goes a long way) and now I have a 10 month old boy.

    He is amazing and I am sure he will give me plenty of reason to stay strong if/when the really bad attacks return.

    Good luck and let us know how you are doing with the new treatment!

    By Blogger Murdock Scott, at 10/08/2009 1:24 AM  

  • diagnosed 2 years ago,but suspect I was treating as sinus previously. How does one function? I wasn't able to keep my "regular" job so am keeping children in my home, but last two days have been very hard to do even that, b/t the headaches and the drugs, it doesn't seem safe. I never know if the cycles are going to be one or two days or weeks.

    By Anonymous grandma, at 12/29/2009 6:47 PM  

  • Grandma,

    I understand how you feel.

    For many years I lived in fear of loosing whatever job I had at the time due to my clusters. I was lucky. During a cycle attacks would come less powerfully in the mid afternoon and then full force between 1-3 am each 24 hours. I usually had jobs where it was OK for me to hide myself away during moderately bad attacks. (for several years I had an office with a door!) Luckily I MOSTLY got really bad attacks at night. Since I have never needed much sleep, I could still keep up unless a cycle went on for several months... then I would start to loose it from shear exhaustion.

    I have worked for myself for the last several years now from home and I only need to be face to face with my clients for short bursts when we have a photo shoot. If I ever had to stop one of these photo shoots due to a bad attack, it would NOT go over well...

    I just keep hoping that never happens. I think many of us with clusters that still work, live in fear of the day that you just won't be able to pull it off any longer.

    I hope you have a good doctor that understands preventatives. Not that those don't make you feel loopy... but its not like the old days when my doctors would just give me pain meds that would make me a basket case.

    Good luck and like I always say to visitors, I am sorry we have this in common.

    By Blogger Murdock Scott, at 12/31/2009 2:14 AM  

  • Wow, what a joy to hear so many others are out there suffering the same way (not misery loves company, just a huge releif to know I'm not alone). I am a 44 year old male who have had clusters since I was five. Every 14-18 months my cycle will start last 2-3 months, one to two headaches a day like clock work, mid morning, then the Zinger at 1:00am. Pace the floor, ice packs, bang the walls, blow my nose harder than any sane person should ever blow their nose, cry alone in the dark, cry in my wife's lap. My wife is a Saint, if not for her, I'd have checked out years ago. Just recently Predinsones have showed some promise but a new cycle only a few months since my last has brought me to Topamax. I must say, the side effects scare me but I will give it a try and report back here soon. Best of luck to you all. Andy

    By Anonymous Anonymous, at 5/24/2010 9:19 AM  

  • I'm a 54yo female and a 35-year cluster headache sufferer (but not all the time!) I also get migraines, but not at the same time, and sometimes a migraine can start a cluster headache series. I take verapimil as prophylactic and it usually works, but not this time.
    I am currently in the middle of a 5-week series with HA starting in the middle of the night (between 1 and 3am), and am now on drug #3 for treatment. Prednisone and then amerge didn't work, and am now on depakote, hopefully it will kick in soon and this most painful series I've had in 15 years will disappear.
    Good luck to all suffering now - I hope your cluster cycles are short, boy, do I feel you pain.

    By Blogger Patricia, at 11/17/2010 11:36 AM  

  • I've been a cluster headache sufferer for 30 years. My neurologist has me on keppra 500 2x day, lithobid 300 2x day, verapamil 120 1x day, topamax 100 1x day and it wasn,t until effexor 150 2x day was added that my headaches have been gone for the first time in 30 years! It's almost a year now. I know it's a lot of meds but I lost my business, my home and almost my life over this horrendous pain, the slight memory loss is worth it to me.

    By Anonymous Anonymous, at 4/19/2011 4:38 PM  

  • Just started the Topomax regimen after years of Verapamil as a prevent. Depakote didn't work. Prednisone was used to try to get the Verapamil up and the depakote started. Sigh. This year, it was a total waste of time. 23 years in with the Beast. My dance goes from January through May and may start up again in October through December...Ususally 1am, 5am, and 1pm but this year, several more times a day and whenever it wants! The 50mg seems to be doing the trick, though, along with 10,000mg D3, 1000mg Calcium, 1000mg omega-3. I also use O2 with non-rebreather full face mask and 15 flow liter with a can of Red Bull when I can catch the break through hits. Red Bull helps dull the pain when I am out and about and can't get to the O2 buying me time to get to where I can get myself a jab of Imitrix. At night, though, nope. That's when my best friend, Imitrix injection, comes to the rescue. Just started hoarding the 4ml generic dose but I have a nice stockpile of the 6ml! I am never without an abort.

    By Blogger Mara, at 3/29/2012 4:40 PM  

Post a Comment

Links to this post:

Create a Link

<< Home