This topic contains 30 replies, has 12 voices, and was last updated by Sleepy RBD 3 weeks, 4 days ago. This post has been viewed 1095 times
- March 2, 2018 at 10:25 am #4880
Sorry in advance if this ends up as a long rant and disjointed… but, I’m having a hard time coping at the moment.
I know it can take a while before each person finds their right combination of medications and lifestyle changes to see improvement, but I’m tired of being tired. And I’m scared I’ll never find the right balance of things for me, and I’ll be perpetually stuck feeling crappy with sub-optimal relief. At the moment, I’m taking 18 mg methylphenidate in the morning. I have no problems during the late morning and early afternoon, but after 2-3pm I’ve just been crashing. It’s not brilliant considering I still have to make it through the rest of my job for the day, commute home, and then face all the usual housework (cooking dinner, cleaning, laundry, etc). I was hoping I could increase the dose and try for a more sustained relief of symptoms, but my blood pressure is still a bit on the high side. So I’m stuck with the lowest dose for now, which only helps the first part of the day.
My other half (bless) tries to sort out everything in the evening, but it’s a huge ask and draining on him as well. I can tell it’s affecting him. I feel horribly guilty that I cannot contribute and he has to do almost everything himself, and after he’s worked a full day at his job.
At my job, I’ve been keeping an optimistic appearance and telling everyone I feel fine, but I don’t. I’m so tired, and people try to be well-meaning and tell me they are tired as well, but I can’t quite get it across that their tired is probably nothing like my tired. I don’t want to bring everyone down by complaining and moaning all the time – and being that person – but it is so difficult to keep up appearances.
People don’t mean it (well, I hope they don’t), but there are some comments that are hurtful. Things like:
“It’s nice you can take days off just because you’re tired.”
“You get free travel; nice how that works out.”
“Work can’t be too harsh on your attendance or hours because you have a disability. You have a lot of flexibility.”
“A lot of disabled benefits, and you’re not even really disabled. It’s not like you are missing limbs or have cancer or MS.”
And almost all of them end in a variation of “I wish I had narcolepsy.”
No. No. You really don’t.
I used to be able to do so much. I used to have ambitious plans and aspirations. And it’s all crushed now, because I have to be realistic with myself, and face up to what I can and cannot do. I don’t want to be defined by narcolepsy and disability and be self-defeating, but I have to be practical about what I am actually able to accomplish, and how far I can realistically push myself.
Trying to get a promotion at work by undertaking a training program and research project for a few years… not bad on the surface, but it involves a lot of extra time and work in addition to the normal work hours, and I’m finding normal work hard enough to maintain. Would I really be able to add on 2 hours after every day, and work on weekends? No. I can’t even summon up enough energy to help cook dinner when I get home.
I hate this.March 2, 2018 at 12:50 pm #4885
I’m glad that you felt like you could “rant” and others on the forum would not judge, but listen with understanding and support. I think that people do not always realize the effect that the things that they may say have on others. Having an invisible illness that is often misunderstood can definitely present challenges. It seems like it is difficult for others to recognize or comprehend the actual impact that this illness can have on one’s daily existence and decisions…
I hope that you will be able to find a combination of medications and lifestyle changes that will be helpful to you. Hang in there and please keep us updated…March 2, 2018 at 1:55 pm #4890
It’s Okay Athene. We hear you and have been there and sympathize. Rants are good because it means you’re upset with your status quo and it’s not acceptable to you.
Is the methylphenidate the only med you’re taking? Nothing to help increase the quality of your sleep?March 2, 2018 at 4:00 pm #4896
@athene it’s as if you articulated how I feel about the condition perfectly when treatment isn’t going well. I think pretty much all of us can relate to this sentiment. I’m a solutions type of person so my first thought is let’s talk about your options.
1. Do you have focalin (dexmethylphenidate) available in your country? It may have less side effects with better stimulation. It’s twice as powerful on an mg basis.
2. Are you on instant release medication? Because methylphenidate only has a duration of effect for about 4 hours, so the IR version is taken 2-3x a day, not once in the morning. It’s effect of increased blood pressure shouldn’t be a problem if taken appropriately timed.
3. Have you considered a blood pressure medication? Taking some magnesium every day for a couple months has been shown to decrease blood pressure, as has arginine, and eating plenty of leafy greens is virtually guaranteed to lower your blood pressure 4-5 points if eaten daily (very well established). I can look up some other stuff if you’re interested.
I absolutely couldn’t function on your dose of medicine. So hang in there and let’s get you fixed up and living again.March 2, 2018 at 6:24 pm #4900
Thanks for the kind words everyone. 🙂
It felt really good to get that off my chest. I have friends and family who are supportive, but I don’t think they really *get* the reality of the symptoms. It’s beyond a “Ooops, I went to bed too late” tiredness; it’s a “numbing soul-destroying black hole” tiredness.
@Ferret Methylphenidate is the only medicine I’m taking for EDS. I’m on sertraline (Zoloft) for cataplexy. I was advised that there are probably better antidepressants to try for cataplexy, but I’m focusing on getting the EDS sorted first.
1. I don’t believe dexmethylphenidate is available here, unless it falls under the methylphenidate category and isn’t listed on its own.
2. I’m on an extended release formulation. The plan was that I was going to try the lowest dose once daily just to see how I got on with it (was I noticing any therapeutic benefit? any troublesome side effects?) and titrate up from there. But when I had an appointment to discuss adjusting the dose after my initial 2 month trial period, my blood pressure was a bit too high for comfort. The hope was that I could increase from 18 mg once in the morning to 18 mg twice a day (once in the morning, and once in the afternoon).
3. I’ve been trying to avoid adding even more prescription medications to my regime, but I am not wholly adverse to taking them if that’s what is needed. I take an all-purpose multivitamin and eat healthy as much as possible (and cutting down the salt as much as I can). I’ve been trying to get more exercise in, but it’s been difficult with my current energy levels (or lackthereof).March 2, 2018 at 8:28 pm #4904
Any chance you could spring for a home blood pressure monitor? Cuff not wrist. My hubby always did his at the same time every morning. That consistency is important because blood pressure varies throughout the day. AND usually everyone’s BP is up when taken in a Doctor’s office. You’re already anxious about even being there. It’s called “The White Coat Effect”.March 4, 2018 at 12:11 pm #4906
I have a home monitor, and I had thought that my BP outside a hospital environment was significantly lower based on my readings. I maintained a log, and my consultant wanted to double check with a 24-hour fitted BP monitor from the hospital. The readings over the 24 hour period from the hospital monitor were higher than what I was getting when doing it myself.
But, I’m pretty sure I was using my own home one correctly. While it’s not the most advanced model you can buy, it it supposed to show error messages when it detects you’ve not done something correctly (ex. moving during a reading, cuff not in the right position, cuff too loose, etc). Plus, the cuff has a picture reference and indicator arrows to guide placement when you’re doing it yourself. Unless I’m being totally oblivious to something, I can’t imagine I’ve been doing my home readings incorrectly all this time.
I have a follow up appointment in a few weeks, and I’m going to bring up the possibility of taking a medication for my blood pressure if that will allow me to increase the dose of methylphenidate.March 4, 2018 at 1:19 pm #4908
Take your home monitor with you to your Doctor’s appointment. Perform the test in front of your Doctor and then with his equipment. The two results should be quite close. If not, maybe yours (or his) needs calibrating… and I can’t help you there. Good luck!March 15, 2018 at 12:07 am #4986
I’m late to the party (sorry, had a change of position at work and have been spending every energetic moment I have towards that), but I will second the focalin recommendation. Out of all the traditional stimmies I tried, it was head and shoulders above the rest. Sorry to hear you are having a rough go! The narco life aint easy, and the random downswings can last for weeks or months it seems.
My current jam: Anathema - SpringfieldMarch 24, 2018 at 4:45 pm #5066
So, I have had a followup appointment to discuss finding a way to get better symptom relief. (and apologies for the delayed reply; it’s so difficult to even use a computer after work when you’re utterly knackered… I’ve just been eating dinner immediately upon getting home and falling asleep)
My blood pressure *is* high, but borderline high – so it’s not *completely* out of the question to increase my methylphenidate dose if that’s what will help.
My consultant had a second look at my most recent sleep study, and said my overnight sleep was noticeably fragmented and there was evidence of periodic limb movement. [Apparently, this is not uncommon in people with narcolepsy so it doesn’t replace or negate a narcolepsy diagnosis. Especially since it sounds from my history that I have unambiguous cataplexy, and it would be exceptionally rare to have cataplexy and not narcolepsy.]
The plan is that I’m going to try and address the overnight sleep fragmentation and limb movements first, and see if there’s any noticeable symptom relief from that without immediately jumping to increasing the methylphenidate dose since my blood pressure *is* borderline high.
I will be trying gabapentin, starting at 100 mg each night and increasing by 100 mg each week (up to a maximum of 600 mg). I didn’t know about gabapentin, but have been advised it may help me get more restorative sleep, and reduce the limb movements which may also be a contributing factor in the sleepiness. And in regards to heart health, it will be kinder than increasing methylphenidate. After my trial period, I’ll have a follow-up appointment and discuss how things are going.
I guess on a side note, has anyone used gabapentin? And if so, what were your impressions (good or bad)?March 24, 2018 at 7:24 pm #5069
Sorry to hear about your troubles. Actually I am a big fan of Gabapentin and frequently use it for sleep consolidation and promoting slow wave sleep. It will also help to calm your mind prior to bedtime. It is frequently used for Primary leg movements of sleep and works very well.
Gabapentin is an older medication and most people do very well with it as it has few adverse effects for most folks.
Be aware initially it may cause a little morning sleepiness.
Best of luckMarch 25, 2018 at 4:17 pm #5072
@athene did you have your iron status checked? Ferritin below 50 is linked to sleep movement. Iron replacement is a standard treatment for it in the US if ferritin is below that level.March 26, 2018 at 12:21 am #5075
I’m on gabapentin 600mg for nerve pain. It helps with my sleep, I think, though, be forewarned, once you get up around 300mg, you’ll probably notice your equilibrium is all messed up.
My current jam: Anathema - SpringfieldMarch 31, 2018 at 4:46 pm #5092
…be forewarned, once you get up around 300mg, you’ll probably notice your equilibrium is all messed up.
In regards to sleepiness levels? Or in another sense?
I was warned that as the dose increases, I’ll probably have much sleepier mornings (which is a bit of a bummer since my mornings are already pretty sleepy). But hopefully, once I get over the morning sleep inertia, I’ll have a more alert day overall. The current dose of methylphenidate only lasts me until about lunch. The afternoon is rough, and productive evenings are almost non-existent.March 31, 2018 at 4:51 pm #5094
@athene did you have your iron status checked? Ferritin below 50 is linked to sleep movement. Iron replacement is a standard treatment for it in the US if ferritin is below that level.
I haven’t had it checked recently. I’ve had it checked several times in the past during the diagnostic workup to see if my tiredness was potentially due to iron deficiency anemia. I think once or twice it was low-normal, but it *was* still within the normal reference interval.
Thanks for the recommendation; I’ll raise it at my follow up.
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