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My Medicine, My Enemy?

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#1 nerkie

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Posted 12 March 2013 - 11:42 AM

I feel like lately my medications have become my enemy.

-Xyrem, 4.5grams, 2 times a night (for cataplexy and EDS)

-Topamax 100MG every morning

-Provigil 200MG, Twice a day

Lots of advil/tylenol/redbull

 

I'm still tired. I'm still exhausted. I wake up at 6am, take a Provigil so I'm good to drive and by 7am when I get in the car I'm ready for a nap. I struggle through my day with every fiber of my being. Ritalin didn't work. I'm always cranky and angry and looking for my next nap. I feel like a drug addict, except instead of crack or speed I'm addicted to sleep. I take my medicine like it says, to the T, but to no affect. I feel so hopeless most days but I hide it because I don't want anyone to know I'm struggling. I still work 40 hours. I still manage to drag myself out of bed on the weekends for activities with my boyfriend but I hardly feel engaged in anything. I fell miserable and utterly helpless. My doctor doesn't know what to do anymore and simply tells me to lose weight. YOU DON'T THINK I TRY? Why yes! I'D LOVE to get out of bed at 5 FREAKING AM to RUN in place for an hour when I'm already constantly tired. FANTASTIC IDEA, CAPTAIN AWESOME. I barely eat anymore because I'd rather sleep than get up and fix food but I don't seem to lose much weight.

I don't know what to do. If any one has any suggestions, I'm so desperate I'll try anything.



#2 DeathRabbit

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Posted 12 March 2013 - 02:30 PM

Wow, I can't believe you are having weight troubles on the Xyrem/Provigil combo. Both of those have a bad habit of turning people into a stick. But yea, I know those enemy feels. Especially with stimulants, and even the nootropics somewhat, there's a law of diminishing returns with their therapeutic value, whilst the side effects tend to creep over time. One thing I would advise for sure, is to wathc the redbull/caffeine intake. Chronic use of caffeine makes it such that you have to have a steady amount in your system just to maintain baseline. In other words, once you become addicted, instead of caffeine giving you a boost when you get it, it just makes you suffer when you don't. You might try medication holidays if you've been on this combo for a while. If you have any vaca time at work, take two days, and give yourself a 4 day weekend with just nothing but the xyrem. Then, perhaps, when you hit your normal stride the next Monday, the meds will be working again. Also, a full blood work up might be in order to look for any anemia/vitamin deficiencies.



#3 MINItron

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Posted 12 March 2013 - 11:29 PM

I agree with D. R. 100%. I actually feel much better now that my caffeine intake is reduced to basically 1 cup of coffee a day. That doesn't mean that I don't supplement from time to time, but not every day.

 

As someone who has struggle with his weight for his entire life I can also tell you that eating too little can be as bad as eating too much. Your body can go in to starvation mode. It will attempt to save every possible calorie you consume by turning it into fat. This can also compound one's fatigue as the body tries to conserve energy.

 

I can also vouch for the fact that exercise really does help with the sleepiness. I have only recently managed to get a major source of chronic pain under control, and it has allowed me to finally start to return to my previous level of exercise. On the days that I go to the gym with my command and work out my energy level is through the roof compared to the days that I don't. It doesn't have to be running a marathon or intense aerobics. Anything that elevates your heart rate works even if it is short brisk walks interspersed throughout your days. 15 minutes here and 15 minutes there is better than nothing. There are even some workouts that you can do with things like a couple jugs of water while you are watching TV.



#4 exanimo

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Posted 14 March 2013 - 03:17 PM

I think medication holidays sound like a good idea. Also perhaps changing up your routine some, might help. Getting stuck in a routine can really bring you down, and increase your EDS. 

 

I have a suggestion on food. As MINttron said, eating little can be just as bad as eating too much. Finding a healthy diet is your best bet. I know that it is very hard with N to get the energy to cook meals, but there are ways you can make it easier. I saw an article once, about planning your meals a week in advance. My first reaction was, are you serious?! That's the stupidest thing I've ever heard! But then I thought about it. If I make a list and plan to make spaghetti on Monday, chicken on tuesday, etc, then I will have to be prepared to do those things. I'll have to go to the grocery store, have the ingredients on hand, and I'll have to fit it into my 'mental to do list' for the day. So Monday I'm sure there will be at least two times throughout the day that I'm thinking 'oh yeah I've got to get the spaghetti going when I get home'. 

 

Also being prepared by having healthy snacks on hand, especially snacks that might help boost energy, such as nuts or other high protein foods. Perhaps make up a big pot of soup one day, then stick it in the fridge or freezer. Then on one of those days where you're hungry but can't figure out what you want or have any energy to make anything, you can just heat it up in the microwave for a minute or two. 

 

But I don't think that your problems are all that attributed to diet. But that doesn't mean that improving your diet and/or weight won't help, because I'm sure it will. But it does sound like medications need to be changed or arranged. The only way to figure that one out is to find which medications are working and which aren't. As you're on a number of them, you would have to do this with each individual medication. And I know that is not something you can do during a normal work week. But perhaps, if you have a few days off, or take a vacation, after talking to your doctor, try going off one of them or decreasing. Or increasing. But finding the medications that are working and the ones that aren't is extremely beneficial. 

 

Good luck :)



#5 skyyblue1816

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Posted 14 March 2013 - 03:57 PM

I feel like lately my medications have become my enemy.
-Xyrem, 4.5grams, 2 times a night (for cataplexy and EDS)
-Topamax 100MG every morning
-Provigil 200MG, Twice a day
Lots of advil/tylenol/redbull

I'm still tired. I'm still exhausted. I wake up at 6am, take a Provigil so I'm good to drive and by 7am when I get in the car I'm ready for a nap. I struggle through my day with every fiber of my being. Ritalin didn't work. I'm always cranky and angry and looking for my next nap. I feel like a drug addict, except instead of crack or speed I'm addicted to sleep. I take my medicine like it says, to the T, but to no affect. I feel so hopeless most days but I hide it because I don't want anyone to know I'm struggling. I still work 40 hours. I still manage to drag myself out of bed on the weekends for activities with my boyfriend but I hardly feel engaged in anything. I fell miserable and utterly helpless. My doctor doesn't know what to do anymore and simply tells me to lose weight. YOU DON'T THINK I TRY? Why yes! I'D LOVE to get out of bed at 5 FREAKING AM to RUN in place for an hour when I'm already constantly tired. FANTASTIC IDEA, CAPTAIN AWESOME. I barely eat anymore because I'd rather sleep than get up and fix food but I don't seem to lose much weight.
I don't know what to do. If any one has any suggestions, I'm so desperate I'll try anything.


Hi,

I have a lot of experience in experimenting with different doses and medicines. In my opinion, you should stop topamax, you don't need it. Start taking 1 200mg of provigil three times a day. I take mine at 8 am, 12pm, and 5pm. Also, take one 30 mg of adderall xr twice a day. It really helps! I just tried xyrem last night and woke up with a fever and soaked in sweat! I'm really going to try to finish the free 30 day supply but wow that sucked. Any advice on xyrem?

#6 MINItron

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Posted 14 March 2013 - 04:52 PM

Actually, on the Topamax I would first ask why are you taking it? If you have a valid reason for taking it. Why are you taking 100mg in the morning? That is quite a bit to take when you are trying to wake up. Topamax can be quite sedating. I take it for nerve pain, and have for about two years. I also take 100mg per day, but I take 50mg in the morning and 50mg in the evening. There is much less chance for sedation that way.



#7 nerkie

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Posted 15 March 2013 - 03:03 AM

@D.R. - I've been slowly cutting out the caffiene so I don't have to go through the withdrawal symptoms and so far it's been pretty good. I'm down to one or two cups of coffee/soda a day, no more red bull or energy drinks. I've been on a medication vacation since Wednesday and I've truly been miserable. I work at a small business so they're fairly good about letting me come in late/leave early when I'm trying to redo my medication. I've had my bloodwork done many times (almost every time I see my G.P.) because he's worried I might get/have diabetes but my bloodwork is always normal.

 

@Minitron - I could exercise more. I find 15 minute workouts on Pinterest and try to do those when I get a chance.

 

@Sky - My topamax is unrelated to the Narcolepsy. It's for headaches and it has been an utter godsend. I no longer wake up with head aches every day which is awesome.

 

@Minitro again - I've never thought to split it up like that.

I've tried other medicine.

Ritalin - fail, no affect

Adderall - triple fail, this seemed to make my sleepiness worse

Nuvigil - constant nausea, had to quit it to keep anything in my stomach.

 

The provigil makes me hot, like really hot. I constantly feel like I have a fever, but it works for the most part until recently and has the least amount of side affects.

I hate xyrem. passionately. I can't seem to wake up from it. I never wake up for my middle of the night alarm, I cough and choke when I'm falling asleep and I was really ill one night and puked in my sleep and didn't wake up. I keep trying lower doses as an experiment but I still keep having the same issues.

Bleh.



#8 DeathRabbit

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Posted 15 March 2013 - 09:07 PM

@D.R. - I've been slowly cutting out the caffiene so I don't have to go through the withdrawal symptoms and so far it's been pretty good. I'm down to one or two cups of coffee/soda a day, no more red bull or energy drinks. I've been on a medication vacation since Wednesday and I've truly been miserable. I work at a small business so they're fairly good about letting me come in late/leave early when I'm trying to redo my medication. I've had my bloodwork done many times (almost every time I see my G.P.) because he's worried I might get/have diabetes but my bloodwork is always normal.

 

@Minitron - I could exercise more. I find 15 minute workouts on Pinterest and try to do those when I get a chance.

 

@Sky - My topamax is unrelated to the Narcolepsy. It's for headaches and it has been an utter godsend. I no longer wake up with head aches every day which is awesome.

 

@Minitro again - I've never thought to split it up like that.

I've tried other medicine.

Ritalin - fail, no affect

Adderall - triple fail, this seemed to make my sleepiness worse

Nuvigil - constant nausea, had to quit it to keep anything in my stomach.

 

The provigil makes me hot, like really hot. I constantly feel like I have a fever, but it works for the most part until recently and has the least amount of side affects.

I hate xyrem. passionately. I can't seem to wake up from it. I never wake up for my middle of the night alarm, I cough and choke when I'm falling asleep and I was really ill one night and puked in my sleep and didn't wake up. I keep trying lower doses as an experiment but I still keep having the same issues.

Bleh.

You cough and choke whilst falling asleep? That sounds like it could be doing too much of a number on your respiratory system. I would advise immediately contacting the prescriving physician over this. That is one seriously uncool symptom. Not to mention the puking. Hendrix and Bonham died that way! As for the Provigil, that sounds like like a hot flash. Perhaps it's provoking an panic attack without the panic. I know that sounds really weird, but I have discovered that your body can go through the gamut of acute anxiety symptoms without conscious worry or fear. It's why some older people will sometimes mistake them for heart attacks, strokes, absence seizures, etc. I guess you'll just have to decide for yourself whether or not that particular side effect is worth it.



#9 MINItron

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Posted 15 March 2013 - 10:49 PM

Topamax has a lot of really valid uses. It can be great helping to keep weight down. It does wonders for neuropathic pain, and also migraines. I take it for neuropathic pain, and I take protriptyline (a Tricyclic Antidepressant) in an attempt to control my REM at night. I always thoroughly check out all medications that I am prescribed, and the Topamax/Protriptyline combo is sometimes used for obese migraineurs as it attacks the problem on multiple fronts. It helps to block headaches, aids weight loss and Protriptyline tends to help counter the sedating effects of Topamax. As a PWN Protriptyline also helps to control the crazy REM symptoms. 

 

On the exercise front some of the things that I do to add to my daily exercise is always avoiding elevators or escalators when ever possible. I always take the stairs if I can. When it's just me going to the store I park at the as far from the store as I can and walk. When I am in the store, especially if it is a big store I make sure to make a full lap or two of the store. Walking is good exercise too, and I take every chance I can get to get as much in as possible.



#10 SeeBee

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Posted 16 March 2013 - 02:45 AM

To the OP - you mentioned blood work. I'm no doctor, so take my armchair diagnosis with a grain of salt, but I hope your doc has checked your thyroid? Hypothyroidism could be a huge part of the persistent EDS, as well as your trouble losing weight.



#11 skyyblue1816

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Posted 16 March 2013 - 09:56 AM

Topamax has a lot of really valid uses. It can be great helping to keep weight down. It does wonders for neuropathic pain, and also migraines. I take it for neuropathic pain, and I take protriptyline (a Tricyclic Antidepressant) in an attempt to control my REM at night. I always thoroughly check out all medications that I am prescribed, and the Topamax/Protriptyline combo is sometimes used for obese migraineurs as it attacks the problem on multiple fronts. It helps to block headaches, aids weight loss and Protriptyline tends to help counter the sedating effects of Topamax. As a PWN Protriptyline also helps to control the crazy REM symptoms. 

 

On the exercise front some of the things that I do to add to my daily exercise is always avoiding elevators or escalators when ever possible. I always take the stairs if I can. When it's just me going to the store I park at the as far from the store as I can and walk. When I am in the store, especially if it is a big store I make sure to make a full lap or two of the store. Walking is good exercise too, and I take every chance I can get to get as much in as possible.

I totally agree with you on the Topamax and it keeping weight down. That's actually one of the reasons why I had to stop it. In combination, the Provigil and Adderall makes my appetite go away, when I was taking Topamax on top of it, I weighed about 100 pounds! 



#12 nerkie

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Posted 28 June 2013 - 12:28 PM

So an update! (I know it's been awhile, lots going on!)

I switched around my medication.

I've been taking Adderall (again) for about 2 months now (20 mg 2x a day) and it seems to be going pretty good. I used to get this insane 'humming bird' feeling but now it's kind of fading and not coming on as strong.

I've taken down my caffeine limit to near zero, which I guess is a good thing.

I stopped the Topomax, when I saw my doctor 2 months ago he said to try stopping it for a while and see if I'll still get headaches. (I do, but not so intense and advil kind of helps)

My xyrem is now 2.5 for the first dose and 4.5 for the second. It seems to be helping with the whole choking issue and I don't sleep through my 2am alarm as much.

I don't take the Adderall on the weekends.

I'm out side a lot more now that all the water parks are open which I think has helped keep my energy up.

I've lost 10 pounds (we're doing a 'Biggest Loser' contest at work, so I'm more motivated now)

All of these are pretty awesome things, but I still feel so freaking exhausted. I know for the most part that this feeling will probably never go away and it's a little discouraging sometimes. My doctor has recommended taking naps at work, but I can barely step away from my desk to use the restroom let alone try to take a nap! I usually nap on the way home from work. I drive 2-3 hours a day so on the way home I'll pull over at a gas station somewhere and catch some 'z's'.

I appreciate all the suggestions and am really trying to live some of them out.



#13 sk8aplexy

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Posted 30 June 2013 - 12:22 PM

Most anytime that I, actually try to take a nap, I find myself laying in bed awake; it's frustrating.

That is to say, that unless I basically have already nodded off or begun napping in my chair, near my bed, and manage to flick the light off as I step over to the bed.  I'll nap for a couple to a few hours, typically.  Setting an alarm or thinking I'll get up in 20-25 minutes, results in laying in bed awake... 

However, when I get up from trying to take a nap which was unsuccessful, I'm then almost near immediately back to the nodding off, if I go back to whatever I was attempting to do prior to attempting the nap...

I've found that, unless I find something else which is stimulating on my mind to do, or that is something physically active to do, it's a vicious cycle for me.

 

Going out for a walk can be good, but sometimes on the walk I become so weak, and/or fatigued/zombied - like, that I must immediately turn around and get home ASAP, as to not end up asleep on a bench or elsewhere.  Focusing on getting to the spot to get some decaf coffee or making the fruit smoothie, perhaps cutting up some guacamole, is all like a mission to complete during these occurrences; almost daily...

 

-sorry, that all may be entirely off topic point...-



#14 DeathRabbit

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Posted 01 July 2013 - 09:17 AM

I actually got put on Topamax for headaches, but it just made them worse and made have a lot of scary automatic behavior.



#15 Hank

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Posted 01 July 2013 - 11:14 AM

I actually got put on Topamax for headaches, but it just made them worse and made have a lot of scary automatic behavior.


Xanax and Topamax together can cause problems with thinking, concentration and judgement. Do you think this combination is working out ok for you? Maybe you are not on both and I am incorrect- just thinking about it.

#16 palindrome

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Posted 01 July 2013 - 12:33 PM

I also have to take Topamax (200 mg) in the morning, but I take it for seizures, so it's non-negotiable. I used to take it at night, but when I started Xyrem, they advised me to take it in the morning since it has sedative qualities. So I think even if I get to the point where Xyrem totally knocks out my EDS, I'll wake up and have to take my Topamax, and I'm back where I started and will have to take my Adderall to combat the Topamax. It's just gas-breaks-gas-breaks for me all the time. Epilepsy in addition to narcolepsy is lots of fun. Before all of you ask, yes all of my doctors are aware of everything I'm taking. 



#17 Hank

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Posted 01 July 2013 - 01:08 PM

I also have to take Topamax (200 mg) in the morning, but I take it for seizures, so it's non-negotiable. I used to take it at night, but when I started Xyrem, they advised me to take it in the morning since it has sedative qualities. So I think even if I get to the point where Xyrem totally knocks out my EDS, I'll wake up and have to take my Topamax, and I'm back where I started and will have to take my Adderall to combat the Topamax. It's just gas-breaks-gas-breaks for me all the time. Epilepsy in addition to narcolepsy is lots of fun. Before all of you ask, yes all of my doctors are aware of everything I'm taking.


I am just curious about your epilepsy diagnosis. Epilepsy was one of my "rule out" diagnoses to explain the Cataplexy that my physician never considered. I also had seizure-like movements in my sleep (PLMS). Eventually, I was treated with a "seizure" medication- Clonazepam. Unfortunately, this medication improved the sleep movement, so I was told it was working. bla, bla, blah.

So, since many of us here have diagnoses that precede our N diagnosis, I am curious how yours was confirmed. You certainly won the jackpot having 2 rare illnesses. It must have been a real challenge to weed out all those symptoms into 2 defined diagnoses.

#18 palindrome

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Posted 01 July 2013 - 01:48 PM

I am just curious about your epilepsy diagnosis. Epilepsy was one of my "rule out" diagnoses to explain the Cataplexy that my physician never considered. I also had seizure-like movements in my sleep (PLMS). Eventually, I was treated with a "seizure" medication- Clonazepam. Unfortunately, this medication improved the sleep movement, so I was told it was working. bla, bla, blah.

So, since many of us here have diagnoses that precede our N diagnosis, I am curious how yours was confirmed. You certainly won the jackpot having 2 rare illnesses. It must have been a real challenge to weed out all those symptoms into 2 defined diagnoses.

 

back in "my day" (I'm 24, but these terms change SO OFTEN) tonic clonic were called Grand Mal seizures, so that's still how I think of them, same with petit mal. I don't even know the new term for that one. anyway. I actually had a grand mal in front of my parents, and several others while I was sleeping but no one was around to witness. the one my parents saw (I was probably 8) obviously caused them to take me to the ER, they described what happened and they probably gave me some Ativan just to be safe, then that same day sent me to a children's neurologist. she ordered an MRI, EEG, etc, etc., heard about how for years before that, I would complain of a "tingling" feeling in my right side, and my heart would race and my right arm and right leg would draw up. blah blah, there's a spot on the left side of my brain (no idea what it is), that causes the right side of my body to draw up and seize if I'm not on medication and/or if I get overly stressed AND...if I don't get enough sleep. which is hilarious, because now I also have narcolepsy.



#19 palindrome

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Posted 01 July 2013 - 01:57 PM

I am just curious about your epilepsy diagnosis. Epilepsy was one of my "rule out" diagnoses to explain the Cataplexy that my physician never considered. I also had seizure-like movements in my sleep (PLMS). Eventually, I was treated with a "seizure" medication- Clonazepam. Unfortunately, this medication improved the sleep movement, so I was told it was working. bla, bla, blah.

So, since many of us here have diagnoses that precede our N diagnosis, I am curious how yours was confirmed. You certainly won the jackpot having 2 rare illnesses. It must have been a real challenge to weed out all those symptoms into 2 defined diagnoses.

 

if you saw my post about benzos, never mind it. I forgot this whole thing was about cataplexy, because I'm an idiot. and about weeding out symptoms, the narcolepsy was actually the most difficult to diagnose. everyone just kept saying my seizure medicine was making me sleepy and to just take it at night and it would be fine. and I was telling them no, I'm getting plenty of sleep at night but I wake up exhausted. so then I was told to push through it, we're all tired sometimes. it's hard now mostly because all of N meds have warnings for people who have seizures, and all of my seizure meds make people drowsy. 



#20 DeathRabbit

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Posted 01 July 2013 - 05:33 PM

@Hank-Oh yeah, I quit the topamax. Didn't even make it a week. My final straw was when I was going down the highway and realized I was doing an nice chicane maneuver between both lanes without realizing it. I was awake and not really sleepy, but I wasn't there. I was just sorta stunned, like my mind was frozen in place. That scared the piss out of me, so I chucked the rest of the topamax in the garbage.







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