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MoxieGirl

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Extreme tired?
Sep 23^rd, 2011 at 2:15pm

I've noticed, more and more, the last year or two, periods of extreme tiredness. And I'm curious if it is cluster related, and if anyone else experiences it.

When I ask the doctors, they say tiredness is a symptom of so many things it is difficult to pinpoint. Fair comment. I'm confident it's not mood related, diet related, exercise related, etc. Etc. Etc.

This lasts 2-4 weeks, then goes away for 3-6 weeks, then returns. My diet is stable, as exercise, mood, medication, etc. Over the course of a few days I will become extremely tired. I normally sleep from 10pm till 6am. I'm a morning person, so am up at 6, and am often up before my alarm ready to start the day. But during this time, I can't get enough sleep. I come home from work, and have a nap, I go to bed at 9, I get up at 6, get ready for work, and take a 15 minute nap before leaving for work. Even when I wake up I don't feel like I've slept at all.

It is often all I can do to stay awake during this time. I am constantly exhausted, and driving becomes dangerous. Also, I'm taking topiramate, so I wonder if that could be a factor.

And then, after a couple weeks, maybe three, it goes away and things return to normal.

I'm trying to track it to see if it comes with a bad cycle of clusters, but as I'm chronic, it is hard to tell. I'm always getting bad clusters. Every 3 days on average.

Just curious if anyone else experiences something like this in relation to the beast.

Thanks

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Extreme tired? Reply #1 - Sep 23^rd, 2011 at 2:54pm How about age related?
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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: Extreme tired? Reply #2 - Sep 23^rd, 2011 at 3:09pm Brew wrote on Sep 23^rd, 2011 at 2:54pm: How about age related? and it don't get no better. Gettin old sux.......really sux. Potter
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Jimi CH.com Moderator CH.com Alumnus Offline Don't feed the moderators Posts: 4925 Madisonville, KY Gender:	Re: Extreme tired? Reply #3 - Sep 23^rd, 2011 at 3:45pm I am hoping that the doctor had ran a bunch of tests and they came back ok before he made that statement. If not, my advise would be to have him put you through a battery of blood tests and see if something shows up. I don't know what you are taking medicine wise but many meds can cause that feeling as well.
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MoxieGirl CH.com Junior Offline Posts: 91 Bury St Edmunds, Suffolk Gender:	Re: Extreme tired? Reply #4 - Sep 23^rd, 2011 at 4:39pm Lol. No, not that old, yet. Have had a range of blood tests recently, and all came back fine. Going to bring it up with my GP again though. I've been able to define the symptoms more clearly recently. But thought I would ask on here before I see her. Thanks
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Bob Johnson

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Re: Extreme tired?
Reply #5 - Sep 23^rd, 2011 at 4:50pm

Your doc is correct. There are so many conditions which might be behind your tiredness that it woul take some time to sort thru them.

Another consideration: chronic/long run physical problems can induce depression AND, in about 50% of cases, the diagnosis is not made by one's emotional life. Depression can appear only as physical symptoms, clerarly making diagnosis difficult.

If you can compensate by adjusting your lifestyle, getting more sleep, etc. this may be easiest way to cope. But don't blow your doc off; keep working with him.

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Bob Johnson

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Extreme tired? Reply #6 - Sep 23^rd, 2011 at 6:35pm Quote: Lol. No, not that old, yet. Just keep telling yourself that. Your profile says you're 45. It's the beginning of the end.
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anthony g CH.com Old Timer Offline I Love CH.com! Posts: 318 manhattan nyc Gender:	Re: Extreme tired? Reply #7 - Sep 23^rd, 2011 at 6:55pm amen brew!
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jon019 CH.com Alumnus Offline "Ya gotta believe!" Posts: 1656 USA Gender:	Re: Extreme tired? Reply #8 - Sep 24^th, 2011 at 1:58am Hi Renee... Much of what you describe would have described ME...on topiramate. To be crass...if I were you.... I'd drop it like a shitty diaper..... Best, Jon
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Guiseppi

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Re: Extreme tired?
Reply #9 - Sep 24^th, 2011 at 4:56am

It's funny Renee, as I age I seem to need less and less sleep! Used to REQUIRE 9+ hours a night or I'd be a walking Zombie. I'm 51 now and 6-7 hours is all I CAN sleep, and that seems to be plenty.

As Bob mentioned, there are so damned many variables, this may take some patience to figure out. is it the Topiriate, are you developing sleep apnea, (while you get 8 hours of "sleep", the apnea would deprive you of true rest), is it depression manifesting itself physically? Certainly not a problem you need in addition to the beast. Wishing you some peace and an answer soon.

Joe

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MoxieGirl

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Re: Extreme tired?
Reply #10 - Sep 24^th, 2011 at 2:37pm

Ok peeps, although I do really appreciate your concern for my health and trying to help me rule out possible causes. It will be difficult for you as you don't know me that well, we are corresponding online, etc. Etc.

Such as, I'm normally a very good sleeper. As I'm getting older, I too am needing less sleep. I have a very regular lifestyle/sleep pattern (most of the time). This cycle started before I started taking topiramate. I've dealt with depression all my life, I know it's affects on me intimately, this is not depression. Life has, in fact, NEVER, been better (apart from the clusters) - but even with the clusters, my life has NEVER been better and I have never been happier or felt more fulfilled. Everything in my life is positive!

I am, in fact, not asking for help diagnosing my tiredness. I'm asking if anyone else has experienced anything similar in relation to clusters. Is it, perhaps something that comes on before a cycle? Like some people get cold before an attack.

Or maybe someone else is on topiramate and also gets these tired attacks.

Or maybe this is just me and it is unrelated to anyone on this bored. Just curious.

Thanks

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DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: Extreme tired? Reply #11 - Sep 24^th, 2011 at 3:38pm Tiredness is not unusual for me when in cycle. I chauk it up to exhaustion from fighting off attacks. It does get better shortly after a cycle ends. -Dennis-
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Brew

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Re: Extreme tired?
Reply #12 - Sep 24^th, 2011 at 3:41pm

Quote:

I'm asking if anyone else has experienced anything similar in relation to clusters.

The only thing I can relate to is the tiredness that comes from interrupted sleep patterns as they relate to nighttime cluster headache attacks.

10 years ago I dragged my ass out of the constant fatigue that goes with severe sleep apnea by using CPAP therapy 7-8 hours every night. It has made a world of difference.

Never took topiramate, so I can't answer to that.

That's as directly as I can answer your question.

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Mike Bernardo

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Re: Extreme tired?
Reply #13 - Sep 27^th, 2011 at 12:56pm

Topiramate knocks me on my arse. In cycle, I take 200mg/day (100 AM, 100 PM). I am constantly tired, no energy, no desire to do anything. As this cycle kicked off, I am managing it with Red Bull, a little O2, and lots of running. I also take 15mg melatonin, which helps a lot. As much as the Topiramate works for me, I hate it. I can't stand the constant fog, haze and doggedness I feel. Anyway, my 2 cents on that.

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Cupper

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Re: Extreme tired?
Reply #14 - Sep 27^th, 2011 at 5:12pm

Tired as can be. 3 am and 4 am hits. Another in the morning. Then late afternoon and a whooper at around 10 or 11 pm. They asked me yesterday at the dentist for my 8:30am if I just rolled out of bed. Sorry up since 4, add a red bull and 100mg Sumi and a few cups of coffee. Another hour nap at 6 at then up at 7. Nearly cry in the shower it's so loud and please can I finish this coffee before you clean my teeth. Ready to try a Bust but can't get a few hours w/o a Sumi.
Yep Tired. Angry

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Pfunk

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Re: Extreme tired?
Reply #15 - Sep 27^th, 2011 at 11:11pm

From experience, I can definitely say that topiramte/topamax has made me very sluggish and/or tired to say te least. At times it made me feel downright stupid or loopy. However, the cobination of it, lithium and Batch's vitamin regimen have really done wonders for me. Also many of the bad side effects seemed to wear off for the most part with time. Best of luck and PF wishes!

Pfunk Cool

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bejeeber

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Re: Extreme tired?
Reply #16 - Sep 28^th, 2011 at 2:05am

MoxieGirl wrote on Sep 23^rd, 2011 at 2:15pm:

Also, I'm taking topiramate, so I wonder if that could be a factor.

It sure sounds like the very likely cause of your tiredness to me.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Mindy

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Re: Extreme tired?
Reply #17 - Sep 28^th, 2011 at 10:31pm

I battle constantly with tiredness!. I can't seem to get enough sleep. I have taken Topiramate, Depakote and Neurontin. My new doctor took me off all of those and now has me on Carbamezapine. Still tired! I think it has to do with fitting my non-stop attacks. I just got over a 4 month attack had 2 days break and am back on a new one going on 6 weeks now. Cry

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MoxieGirl

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Re: Extreme tired?
Reply #18 - Oct 1^st, 2011 at 3:26am

Thank you everyone for your comments. Thank you so very much.

It's strange, as a sufferer, I know full well what it's like. When I describe what this Hell is lke to my friends, and I watch their eyes go wide, and their jaws drop, as they grasp what I go through on a week by week basis, and they ask how I live through it... and yet, when I, even I, a fellow sufferer, come on this site and read other's comments, my eyes go wide and my jaw drops. My eyes water and I wonder how people live through it. Then I remind myself that I'm one of the unlucky people living through it too.

And I cry all the more.

Connecting with the people here, although I don't do it very often, does mean a lot to me.

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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: Extreme tired? Reply #19 - Oct 1^st, 2011 at 5:37am MoxieGirl wrote on Oct 1^st, 2011 at 3:26am: Connecting with the people here, although I don't do it very often, does mean a lot to me. Knowing I'm not alone too helps a LOT.
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Extreme tired? Reply #20 - Oct 1^st, 2011 at 9:32am Mike NZ wrote on Oct 1^st, 2011 at 5:37am: MoxieGirl wrote on Oct 1^st, 2011 at 3:26am: Connecting with the people here, although I don't do it very often, does mean a lot to me. Knowing I'm not alone too helps a LOT. Having a group like this, that I KNOW understands me....makes all the difference to me. Joe
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Ob1kanobee CH.com Veteran Offline I love YaBB 1G - SP1! Posts: 109 Orlando, FL Gender:	Re: Extreme tired? Reply #21 - Oct 1^st, 2011 at 9:57am I have found that keeping my body flushed with fluids has helped with my sleepiness. I literally have to keep track of how much water I am drinking and I still don't feel like it is enough. Have you figured out how much water you are drinking each day?
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