The most significant thing I noticed when I started C/L, was a great improvement in mood and anxiety.
Now doses are starting to wear off before next dose and just don’t work much at all if I’ve eaten protein before— even two hours! I’ve been trying to stabilize sleep for a year now, still not there, and it’s not easy to get a schedule that includes sufficient food and working c/l doses, exercise and supplements (some on empty stomach, others with meals). Being tired from lack of sleep also slows my digestion, and makes remembering harder.
So complicated. And I’ve never been an organized schedule type person.
The worst part is that after a failed dose too close to a meal, my anxiety shoots up. At that point I don’t even remember that it’s likely a failed c/l dose, just feel horrible and mire symptomatic until the next dose.
Only solutions I know, being very careful of meds and meals schedule, and/or leaving protein fir the end of the day.
Anything else that might help? I know s lit of you have dealt with this, or are dealing with it.
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And, I’m assuming it’s better at this point, if need be, to bring doses closer together maybe 3 1/2 instead if 4 hrs?), rather than increase the dose, neuro suggested increasing the dose.
Dr. Ahlskog's general dosing advice, is first find the dose amount that gives you good relief from you symptoms, and then find the inter-dose interval such that you don't go off between doses.
I know of no other solution than "leaving protein for the end of the day".
Regarding sleep, the thing that really help me was Sertraline, which I take for anxiety. Before Sertraline, I would find myself awake in the night, with my mind racing, thinking about all the things that happened during the day (over and over again), and all the thinks I was worried about for the future (over and over again) (fyi, this is referred to as "ruminating").
Did you know that it may take up to 6 weeks to take full effect? It is well reported that you can actually see a worsening during this time. I experienced this worsening effect, but then, after the 6 week period, it was "magical"...
FYI, check out these reviews (>60% of the users gave it a score of 8, 9, or 10).
Oh sorry. Didn’t read that properly. He took it for a long time. It seemed to go through a period of making him feel ok but then he became manic and wouldn’t stop eating , speeding, buying things and gambling. And jittery then suicidal. The same happened with fluoxetine. He just can’t handle this type of drug. Getting off it has been a major headache as it is taking so long. At one point he was down to about a 1/8 of a tablet then stopped but it hit him with a vengeance so he had to go back on as he was such a mess shivering and pacing. Then he started on Hardys daily essential nutrients and felt a lot better but he has still been weaning off again incredibly slowly as that last tiny crumb seems to do all the work so it’s hard to get off it.
For anxiety, have you tried CBD? And L-theanine? Both will have a mild effect but in my experience both are helpful with no side effects. CBD has supposedly been found to reduce chances of dementia (Dr. Rhonda Patrick). When it comes to protein causing your CL to not work, does that apply to vegetarian protein as well like lentils or beans, eggs, cheese or just meat?
My Dad had luck with vegetarian pea protein in smoothies which satiated him without compromising CL effectiveness.
This sounds like the reaction my husband had to madopar and kinson(sinemet). They made him jittery. We are using a raft of things now and he is a lot better but it is just coming out of summer here so I will hold my judgement until get near the end of May/June which is when he normally goes to pieces and if he is still good I will declare a success.
New things to his regime that have helped I think are :
He is using the apolloneuro since last December which regulates heart rate variability. He is using the coronet red light helmet twice a day since mid March. He has a couple of drops of hemp oil in the morning( without the cbd and thc so it is non prescription.).
He takes a 1/4 sublingual gaba if he starts feeling anxious.
He takes 1/4 procyclidine morning and night to counteract effects of any other medications. He has an air filter in his bedroom where he sits most of the day.
Last December he was anxious to the point of being suicidal and actually threw himself down the stairs backwards one day when I went shopping and he was home alone. Fortunately only bruises. He had to take clonazapam a few times a day at his worst to calm himself. Now his mood is pretty much stable, and he hasn’t had clonazapam since mid December.
He is pretty much completely of his mirtazapine which made him dopey and sertraline that also made him jittery. He isn’t depressed at all now which he was when he went on them.
He doesn’t seem to need afternoon sleeps now and seems to have a little more energy.
Sorry to hear you’re having problems, Rebecca. My suggestion is Melatonin for sleep and for PD itself. As well as melatonin supplements topping up our natural melatonin supplies and therefore strengthening our circadian rhythm and making sleep sounder, melatonin is an excellent antioxidant, getting rid of free radicals. I take 2mg at 8 pm and sleep very sound for 8-9 hours. Before taking melatonin I had hypnagogic hallucinations every night, but not any more.
Would be careful about sertraline, as an SSRI it will have a certain stimulative effect so in the end it will impair sleep. I would take a dose of melatonin about 90 minutes before going to bed. If that isn't enough, then at the same time ahead of bedtime, i e about 90 minutes, low dose clonazepam is quite helpful and quite safe, you start with a quarter milligram and see if that doesn't help.
Hi MarionP, Interestingly, I discussed the effect of sertraline on sleep with my doctor, and she said that it was difficult to predict - for some people their sleep is improved, and for some it is worsened...
Some of the SSRIs are more stimulating than others. But everyone seems to react a little bit differently. SSRIs that hype me up will make some of my friends fall asleep. I’d be cautious with clonazepam, although I know Marion is very knowledgeable. But it is a benzo and I don’t think you can take it long term. I took it and had to be weaned off after taking it long-term and that was a big pain. But it might be something to get you through for a bit, but you build up dependence fairly quickly.
Yes you can take it long term if you are countering anything stimulative and doing it for sleep. Most benign of the benzodiazepines and has an unfair bad rap among amateurs, and there are no significant issues at the lowest doses. Zoloft on other hand is considerably more dangerous and is actually liable to cause withdrawal problems if used long term, because of its multiple chemical actions (wheras clonazepam only works in the GABA sphere, which is what you want, it's nature's brake fluid), so no zoloft unless you are being treated for major depression. As a prescribing psychologist in NM for over a decade before retiring, I can well attest.
Yes i can agree from experience with what Marion is saying after watching my husband who doesn’t respond well to SSRIs . He has clonazapams cut into quarters for emergencies and I’m happy to say he hasn’t needed any for months now. But they were very good when he was suicidal with anxiety and were a safety net for him as he knew if he felt so bad he wanted to die he could escape the feeling by taking 1/4. I think if the dose is offsetting a serious symptom it doesn’t appear to be as addictive as he has not had to wean off them because he only took a bit when he needed it , not regularly.
He is also taking 1/4 procyclidine morning and night which is supposed to help with reactions to medications and I think it helps. He isn’t taking it at the full dose prescribed as he is wary of the possible side effects but at this low dose it doesn’t appear to be having side effects. Honestly I think most of these drugs are way too strong at the full doses for him.
I see what you’re saying Marion. Zoloft definitely is affecting more in the brain. I can attest however that both Klonopin and Zoloft cause with drawl symptoms, and neither is pleasant. Unfortunately when it comes to this stuff I’m not exactly an amateur LOL. But with that said, I don’t disagree and I should’ve phrased it better, that a patient should take whatever they can take the most safely to relieve horrible anxiety and panic symptoms. There’s no point in suffering when there are medications out there. And really Zoloft is probably the more benign of the SSRIs. I don’t think any of them are really benign but Zoloft seems to have a lower side effect profile than some of the others although agreed it’s very difficult to get off of. But I would say that for any SSRI. But yes definitely I think people should just take the safest thing and not be in agony. If clonazepam works for someone, It’s worth it. Some people do very well with Zoloft for anxiety over the long term. Other people don’t seem to do well with it like any other SSRI. But clonazepam is nice for that shorter term relief and it stays in the system longer than Xanax. You’re absolutely right Marion, Clonazepam works on the GABA receptors. Actually Xanax does too. But an SSRI like Zoloft is a whole other ball game. I just think in the long run relief is the name of the game.
So in the interest of being actually honest and clear, you are saying that you are licensed to prescribe? Because that's the only thing "not an amateur" means. In the interest of those whom you might mislead without intending to.
For instance, you have changed the conversation by assumption and omission to imply that what we were talking about is "benzodiazepines" instead of merely clonazepam, (all benzodiazepines are definitely not the same in their effect and action), and you have also implied that the conversation is about chronic excess use of benzodiazepines when it same to me we were talking about episodic use by need... So again, with clonazepam, chronic use at low doses to fill an actual need rarely results in addiction or significant dependency.
Assessment of needs is a matter of professional judgment and advice. A trained professional would not make these argumentative you have noted and facile attempts to "win" an argument or "hold your own," more correct than someone else, nor would they insert emotional needs into a conversation; while misdirecting topic into something else without clearly stating that that is what you have done... It's quite possible that your difficulties may indeed have been the result of misuse, overdose, excessive dose frequency, or too much non-adult supervision in the choices you made with them... or, because you simply don't have the same condition as the person asking the question...again risking imparting significant possibly dangerous misinformation by those who don't understand the use of terms as well as the limits of the use of terms in a trained professional level. You have done all of these; moreover, you probably don't even realize that you have done so ( that you are an honest person to begin with and do not intend to mislead in order to suave your ego). Actual professionals will not risk the possibility of inadvertently supplying misinformation or error, by either omission or commission, because somebody may actually act on the advice to their detriment, which to a professional is an unacceptable risk, and something they're used to scanning in their own behavior so as to minimize its effect as a risk of error. Professionals are, by supervision and ethics, dedicated to suppressing influences such as personal need and ego, looking to exclude them in the process for the benefit of those who consider their advice... Which also comes with the requisite traditional 10,000 hour minimum of work considered to comprise the floor of professional mastery. I do not think you can say the same, or your script would have been rather different. That's what I mean by "amateur." Yes, you sound like a very typical amateur, i.e., not a professional. The line is actually rather clear. If you don't mind, what exactly is it that makes you "not exactly an amateur?" Little more than your own singular experience as a patient or family caregiver, I'd warrant...mostly occasional random otherwise. Amateurs who emotionally wish they were more often give in to the temptation to exaggerate...a characteristic of being an amateur actually.
Readers take warning, there is good educational information here about how subtle misinformation can creep in...a good lesson. Some free advice as well as improper hidden twisting of a conversation's premises such as Godiv here has shown can be worth considerably less than the price. You can't get a prescription without being given it by a professional anyway. Some people believe a medication can't help your real, treatable suffering and side effect from another med that you still must have, because the person doesn't know his own limits and presents himself as knowledgeable, exactly because he doesn't know hos limits, or doesn't care. The use of prescription meds is supposed to be under medical supervision and feedback anyway, you can't just get them on any street corner in the first place and every prescriber already knows what to do and prescribe already, which includes dose and schedule and to meet what need, all part of the prescription in the first place, you can't get a chemist to even dispense it to you otherwise. That including by definition also what not to do.
Typical amateur? Interesting. I’d rather the correct term be used and the compassionate term, which is “patient“ I seem to have ruffled some feathers and I am sorry for that. Let’s not engage and run around in circles. Thank you for your responses and for the information. Cheers.
I have never pasted a link on this site so I hope it worked. I wanted to put the link in for the Davis Finney foundation discussion with Dr Greg Pontone, who is affiliated with Johns Hopkins. He has studied anxiety in Parkinson's and has dubbed this end of dose anxiety, fluctuation associated anxiety. I was relieved just to see it acknowledged and described as it is certainly something I suffer from. Oddly I find it much worse if I use an extended release carbidopa levodopa. So I always seem to be back with my immediate release C /L. I read recently that anxiety is a problem with Rytary for some people which made me a little less eager to try it.If I could get rid of just one symptom of PD I think it would be anxiety. It makes it so very difficult to deal with the other symptoms.
Thanks to all for your comments. I am already on antidepressants but will be reviewing with my Psy-doc. Unfortunately I got “stuck” with taking a benzo, when sleep became more difficult, and I’m probably faced with tapering, which I will also be reviewing with my doc. I take responsibility for getting into this situation, I was not ignorant of the dependence issue, but couldn’t face not sleeping and didn’t handle it well. I’m meditating and doing relaxation exercises, and trying to keep meds on a strict schedule w/o too much food interference.
Please look into taking Hardys daily essential nutrients if you are tapering . Ring their product specialist on their free line. They are very experienced in helping people off their medications , under doctors approval of course.
Thanks, my friend. Yes, I know that slow is the way with benzos and other strong drugs. I've done it before (olanzapine), can do it again. Met with new Psy-doc this morning, and she is very clear on this.
Sorry, I hit post before I was finished. That’s great about the doctor and I hope she can help also.None of all of this seems to be much fun does it LOL?
It is lonely. It’s a challenge that not everybody faces and I guess that’s good but it is lonely. I find myself overwhelmed by research on supplements and stuff like that and wants somebody to help LOL. But yes the fear and the discomfort make it lonely I think. Yuck. Oh well…
Totally get you. I've lightened up since all the hyperfocus on figuring things out and doing everything right was causing me too much stress -- typical perfectionist. I'm trying to take a different approach of doing the best I can but giving more priority to what makes me feel good. First few years I couldn't miss a day of exercise without worrying. Or eat something not on my diet. Laurie Mischley says that's the typical Parkinson's personality, and to try really hard to get to 80% compliance or something like that. 😆
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Anyone else take there meds when you start feeling the off coming on?
When your C/L wears OFF do you feel anxiety or is it caused by a different factor ?
Effects from going off of amantadine
A riddle, wrapped in a mystery, inside an enigma!
