I went to the doctor Friday and presented him with info I learned mainly from the forum.  After discussing a lot of potential pros and cons he wanted to try Topamax first.  That was fine with me because he's willing to change it if it doesn't work, and by the research I've done it looks like Topamax might be a good fit for me IF I don't have the memory loss side effect.  That side effect apparently only occurs in a low percentage of people taking it.  I've started with 50/day and upping to 100/day by the end of the week and see what happens. 

BTW, on another topic, I told him what I was doing with the welders oxygen and he was quite amused.  He actually told me that it was unlikely insurance would cover the much more expensive medical oxygen if he were to write a prescription because my blood oxygen levels were normal, but I should of course understand he couldn't recommend using non medical oxygen.  He was smiling the whole time.  It was hilarious.

chirp, chirp, chirp, chirp (cricket sounds)  ::)

Your doc is wrong about the insurance covering the 02. I had Kaiser, notoriously the most tight fisted of insurance, and they covered 100% of my oxygen. It takes a little perisistence...when you show them the math, a $200 imitrex shot to abort, or less then $1.00 for an oxygen abortive. And our arterial 02 levels have nothing to do with our need for 02. We still have SOOOOOOO much education to do in the medical field! >:(

As to the topomax, many here swear by it. The potential side effects are just that, potential. Some have posted that by taking the dose at night they mitigated most of the loopy side effects, again, in conjunction with your doc's instructions but worth asking if night time dosing is okay.

Joe

Topamax can work, although it didn't for me. Then again, not much worked for me....yet, here I am! The side effects did cause me to lose words, but they also helped me lose weight. It's one of the few preventatives that will do that. Good luck and let us know how you're making out. BTW, you do realize this is not a live chat site? blessings. lance

Just joking around with the cricket thing.  My sense of humor sometimes doesn't carry over well into more serious web forums, yet I still can't seem to keep it from poking its head in and offending folks from time to time.  Sorry. 

I'm happy to chime in here with some Topamax (topiramate, if generic) info from my previous experience and also medical sources.

I recommend that you explore the potential side effects before asking other users about their experiences. I found that Topamax is one of those drugs that really acts differently from person to person, so someone else's experience is less helpful with this drug. That said, it still helps to know what the potential side effects (SA) are, so you can anticipate and deal with them.

For Topamax, these are the officially-reported SA's: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. Doesn't mean that they're likely for YOU, just that they've been commonly reported  by Topamax users. In most cases, these effects are still uncommon for the average user. It really is only a subset--particuarly those who don't gradually increase Topamax--who experience significant SA's.

I understand, Applenut.  I actually did quite a bit of research here and elsewhere on potential side effects.  There are some that wouldn't be acceptable, but those aren't very common.  So far so good.  I increase to 100/day today so we'll see how that goes.  I'm experiencing a little weird taste in sodas but not too bad.  I don't need to be drinking so many of those anyway.    It seems that the past couple of days have been a little lighter in CH but I'm not sure at this point if it's the Topamax working or not.   

Good luck with Topamax, may it do for you all you need it to do. It's a good med that has worked wonders for some. And for record, no one was offended. We'll let you know if you manage to bruise our sensitive collective feelings. blessings. lance

wimsey1 wrote on Sep 26^th, 2012 at 8:19am:

...And for record, no one was offended....

I'm very glad to hear that.  :) 

I kind of feel like I'm living in slow motion at times.   Like my head is a couple of steps behind the rest of my body.  I hope that diminishes as I get used to the increase in dosage. 

Please advise me here:  At this point I'm reducing back to 50/day which I can tolerate and still has some preventive effect with me.  I can't do my job with the higher dosage.  Maybe I should settle in at 50/day for a month or so and THEN go higher?  Anybody with similar experience?  Am I at a dead end here or should I go forward at the lower dose and progress upward at a slower pace?  On a positive note I will say that it seems to have more of an impact on the CH as the dosage increases.  Am I just not giving enough time for the dopey feeling to wear off?  I've read some reviews that said it takes about 8 weeks for that to happen, but I'm at the beginning of about a 2 month busy season at work and I can't afford to be feeling loopy for 8 weeks.  I guess my question is should I cut back to 50/day until business cuts back and then increase, or taper completely off and start back from square one?

Update:  I just talked to the doctor on the phone and was told I could taper back the morning dose and go heavy at night or just take it at night only if it totally messes with my day, but to not go off of it entirely at this time.  Apparently I can tweak it to my needs within reason.  With that, I'm thinking about just going heavy at night and none in the morning.  Does that make sense to you guys?

Quote:

I'm thinking about just going heavy at night and none in the morning.  Does that make sense to you guys?

Another here does the same thing and has found that a more tolerable way to go, sleeping off most any disoriented feeling.  Worth a try for you.







Chirping in to beat the crickets to a moonlit chilly starry stillness, and that faaaar off train rumbling.  Oh, the refrigerator's running, too.




:)

I know it's just been one afternoon but much better so far.  CH not bad either just once this morning with a quick abort.

It's real interesting to hear others experiences with Topiramate (Topamax).  I used it to break up a cycle two years ago and I had a number of side effects.  They ranged anywhere from the metallic taste (especially in carbonated drinks) to severe diminishing of motor skills, fatigue, and difficulty finding words.

The last side effect was particularly frustrating since I speak in front of many people for work.

I'm looking to bust up a cycle now and have considered going back to Topomax, but wondered if something like Imitrex might be more gentle.  Any thoughts are appreciated.

Oh, and good luck to fun2drum.  I'm interested reading what others have tried, but hate to hear others are struggling with this.

Imitrex is an abortive, topamax is a prevent. Two different applications. Verapamil is a common prevent with (usually) less side effects.

I have taken Verapamil daily for 9 years as a preventive with no side effects.  Also, I've had great success with Topomax as an abortive to break my last cycle and would definitely use it again if it weren't for the side effects, which hit me extremely hard.  I would certainly take the side effects over a CH, but hoping something like Imitrex might help to break my current cycle.  I've also had no luck with Sprixas an abortive, but mild success with Magnesium.

Love to hear the feedback and I'm certainly hoping my experiences might help someone else.

I think you are not clear on the terminology, an abortive aborts one headache attack only... that is imitrex and oxygen. A prevent effects the whole cycle... aborts it? Actually no, just prevents it from coming through, if you are lucky, most only reduce frequency and severity of the remaining hits in the cycle.
If you really want to abort/break cycles, may I suggest clusterbusters.com

I guess I was using the terminology incorrectly.  My apologies.  Sounds like my treatments have all been considered "preventative".

No, No, not saying you are wrong... just saying imitrex won't "break" your cycles (prevent). Verapamil and Topamax have broken your cycles, meaning you are one of the few that gets complete relief from prevents... that is good. I would look at Lithium if you are not ready to go to clusterbusters.com

Ok, thanks for the info.  Not ready for clusterbusters yet.  I have an appointment with a local neurologist, which I think will help.  My PCP doesn't seem to be able to differentiate CHs from migraines and my previous neuro is in Chicago.

Anyway, to get back on topic here...  Still hoping to avoid Topomax at all costs.  Perhaps Lithium would be a suitable alternative.

I'm hoping these updates will help:  After a couple of weeks that were pretty rough with the loopy feeling, I'm feeling more alive now.  I can understand how some people would drop off after a week or two of initially feeling that way, but going with the night-only dosing has made it possible for me to see it through.  This week I feel like I have awakened from a fog and more like myself again.  I'm still not taking a daytime dose, but my night dose isn't giving me the same weird feelings and strange dreams either.  Cola tastes funny and some food tastes funny but some tastes fine.  The thought of drinking alcohol is no longer appealing.  I'm having no problems with speech or memory, but during the first week my family said I was pausing in my sentences (I didn't notice).  The CH isn't out but it's at least down to 1 or 2 more manageable ones a day as opposed to 3 or 4 daily killers.  There seems to be, at least for me, a required period of getting used to this medicine.  I'll keep the updates coming here because I don't see a lot of people posting positive things about this drug, but it may be suitable for some. 

fun2drum wrote on Oct 9^th, 2012 at 9:46am:

I'm hoping these updates will help:  I can understand how some people would drop off after a week or two of initially feeling that way, but going with the night-only dosing has made it possible for me to see it through.  The CH isn't out but it's at least down to 1 or 2 more manageable ones a day as opposed to 3 or 4 daily killers.  There seems to be, at least for me, a required period of getting used to this medicine.

Yes, they do.  There will be several posts you may read that say they've tried this and that and other and nothing works, or the side effects were too bad. 

Initially topomax wasn't any fast working remedy for you and as you mentioned, there were perhaps reasons some may discontinue use due to side effects.  Here you are a 2 weeks out and minimizing the side-effects and getting prevention, and importantly, it beats the relentless hits.

Giving it a chance and night dosing has given you tolerable results.  Persevering with a bit of faith is a good example of "I tried topomax and here is what I found and what it did for me."

Sometimes a certain preventative may not work, but knowing how to use it should be experienced.  Hope it keeps you doing better.  Thanks for paying it forward.      :)

Hey fun2drum.  Hopefully you can stick with it a little longer.  I used Topomax a few years ago and had similar side effects.  I stayed on it for about a month, which managed to end my cycle.  Hopefully you can find some relief too.

Here's something noteworthy:  I don't have many night CH's but last night I woke up with one.  It's the first time I've had a CH that radiated from the left eye across to the other and that DIDN'T send me to the ER.  I've had night CH's before that did that and they were so intense that I was begging my wife to get me to the hospital, but last night was different.  Although it was radiating across from the left in waves, the pain level was about 1/4 what it was when I went to the ER.  It woke me up but was manageable, and I was able to abort it almost completely within about 10 minutes.  I'm convinced that if it were not for the Topamax I would have been in the ER and would be out of work today.  The side effects have become non existent during the day and not noticeable at night.

It looks like this cycle has become manageable with the Topomax helping. 

Stay in touch with your doc on its usage.  There can be times within an episode when the hits seem to be putting in their maximum effort.  Fluctuation of intensity and frequency that can result in breakthoughs. 

Before ever thinking, "The Topomax stopped working!", remember that since the cycle can fluctuate, so can the preventative.  A small tweek could be necessary for a short time, and reduced when not needed with a cooperative doc, who SHOULD understand this. 

Stay a step ahead, keep your on-top-it momemtum and press the advantage when needed.  Good news overall and good job.    :)

It's been a while since I reported last, but now things have changed a bit.  I've made the decision to reduce and eventually stop the Topamax.  It does work well for CH control but other side effects have been coming into play.  I do sales presentations for a living and I now have random difficulty putting thoughts into words.  That doesn't work.  I'll try keep you posted on how things go as I reduce the dose over the next weeks.

Over the years I have had different responses to topamax some good some bad. A couple years it broke the cycle within a few weeks I was able to quit taking it and went months in remission, when I tried using it as a maintenance drug I always kept a low grade headache I guess it was a "shadow" now I know. This year I have had CH's since May and they went ballistic about a week ago started Topamax in June and started varapamil last week. Anyway the topamax has been a friend and a demon so I wonder if quiting it completely might have caused some of the problems I had with it later. Maybe a 25 or a low dose as a maintenance might give you a cure.

F2D,

See your doctor about a lab test for 25-Hydroxyvitamin D, a.k.a. 25(OH)D.  25(OH)D is a metabolite of vitamin D3 and the serum concentration of this metabolite is used to measure vitamin D3 status. 

The normal reference range for this lab test is 30 to 100 ng/mL...  If your results come back less than 30 ng/mL...  you're vitamin D3 deficient. 

If this is the case, try adding the anti-inflammatory regimen with 10,000 IU or more vitamin D3 to your daily supplements and see what it does for invigorating your thinking processes and presentations.

You can find the details at the following two links:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Shoot me a PM if you have questions.

Take care,

V/R, Batch

Good news on the Topamax. I had results from it as well... about a 50% reduction in HA's when my doctors took me off of it. (Both neuro and PCP agreed that a 60 lb. weight loss within two months was too much.)

I also suffered through the same side effects you mention--inability to find the right word, taste changes, and clumsiness. Lord, I could not walk across the room without tripping and putting together an IKEA shelf was torture! I dropped that stupid wrench about 50 times.  >:(

But after a month or so, the only side effect that still plagued me was the weight loss and GI problems. I'd still be on it if I could.

Thanks for all the encouragement and tips.  I've been very busy with work the past month and it's been a while since posting, so here's an update:  No Topamax since my last post and my taste is back, my ability to communicate is back, and I didn't even realize how little energy I had until now.  The CH's are down still.  Remission? Not quite.  Still having one or two a day and I'm on the road a lot in sales so oxygen isn't an option in those cases, but the intensity is very light by comparison to before the Topamax.   I am still taking D3 supplements and drinking a lot of fluids which seems to help.  I think the Topamax at least broke the endless cycle from Hell I was going through.  I still have refills on hold and I'm keeping some on hand in case things get worse.

I have been on Topomax (topamariate) for years. 4 ish I'd say.  you can tell I keep a good headache journal....  hahahaha

I don't even know what my dosage is, not over 100mg.  I take it before bed.

For what it is worth, it took a Very Long Time for the side effects to "wear off".    Mostly I was cold/ chilled and had tingling in my fingers.    If I am not as sharp as I used to be, I blame it on age (42) and doing the same ducking mindless job for the last  10 years.   I am a purchasing agent.......

I also take some Wellbutren if that matters, and drink lots of beer and 7 and 7.   

    I get blood work done to make sure the topomax is not killing my livers.  Yes, when you drink as much as I do you get 2.   

Merry Christmas.   

I am on Topamax 150 MG a day to prevent CH.  When I began I started at 25mg and worked my way up over 8 months and suffered many side effects during that time, including:
      extreme memory loss, tingling arms and legs, appetite lose, fatigue.  And you must rememeber that it decreases the effectiveness of birth control while increasing the chance of birth defects!

I am also on Verapmil 180MG to prevent CH. 
       much easier to tolerate.  was only lightheaded for the first week and if i take a does an hour or 2 late during the day.

When I experiance a headache: Imitrex 100 MG and 2 excedrine are my first line.  They take about 30 mins to kick in but generally work.  I look forward to the imitrex tingle because you know it is working.  I MUST pair imitrex with SOME sort of pain reliever such as excedrine or naproxen b/c imitrex has no pain relieve in it. 

I hope my year of suffering and medical exploration helps someone!!! Good luck everyone!

Welcome to the board Vekilla, what part of the world do you live in? Your medicinal regimen is sorely lacking and reflects a doctor who knows very little about treating CH. Let us kn ow where you're from, maybe we can refer you to a doc who knows some of the more modern treatments available. For now, start with this:

Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This link will show you how to get set up with welding oxygen:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. As you have already discovered, the pill form generally works too slow to be effective for CH’ers.

Follow this link  to the medications section of this board and read the post  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s healthy for you even without CH!

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com

I'm so glad you found us, let's get you some effective treatments to put the beast back in his hole!

Joe

vekilla wrote on Jan 29^th, 2013 at 10:13am:

When I experiance a headache: Imitrex 100 MG and 2 excedrine are my first line.  They take about 30 mins to kick in but generally work.  I look forward to the imitrex tingle because you know it is working.  I MUST pair imitrex with SOME sort of pain reliever such as excedrine or naproxen b/c imitrex has no pain relieve in it.

It sounds like you are using imitrex tablets, which is why it takes 30 minutes to kick in. The imitrex injections are a lot more effective, taking about 5 minutes to kick in saving you a whole lot of pain.

The excedrine tablets contain paracetamol, so be careful about using too many of these as it is very easy to overdose with potentially lethal results. Also if you're using them more than 10 days a month you are likely to be also getting rebound headaches. Using the injections means you don't need to take them.

Also look at using oxygen (read info on the left). This can kill off a CH for me in about 5 minutes with 25lpm and a non-rebreather mask.

I use O2 at 15 and it works in 5-8 min.

I took Topamax at 100mg/day.  It was brilliant (no headaches of any kind) except for my side effects - stupidness, weight gain, everything tasted warm and odd in my mouth, gas and constipation.  For me, I tried it for 4 weeks but the side effects were getting worse, not better.  So far though, it is the only thing that has actually worked 100%.

Stopped the topamax still taking varapamil and D3 at 20000 a day been pretty much CH free had 3 in the last 3 weeks so much better