I was diagnosed with PD on 8/8/2024. I have never suffered from anxiety until that date. Since my diagnosis, I have severe insomnia. If I take a low dose Xanax (which my doctor doesn’t me to do every night), I sleep all night. I’ve tried taking Escitalopram and Buspirione and both made me incredibly ill. I’m looking for a med I can take during the day to get some relief that won’t kill my GI tract. I’ve also recently started cognitive behavioral therapy and acupuncture hoping for some relief. I currently do not take any PD meds as my tremor is still mild. I do take magnesium L-Threonate at night. Does anyone have any suggestion on what I could try? I feel like my anxiety is manageable during the day but at nighttime, it rears its very ugly head.
Looking for advice on anti-depressants/an... - Cure Parkinson's
Looking for advice on anti-depressants/anti- anxiety meds
I took duloxetine (Cymbalta) for several years that was prescribed for me for GAD, I still have episodes of high anxiety for which I take Klonopin, although at a very low dose of half of an 0.5 mg tab, and it helps with my tremor. ( I was recently switched to escitilopram) For sleep I take occasional valerian which seems to work well. The Klonopin will also knock me out.
Thank you for the info. Cymbalta is actually the one I was considering but all the meds seem to have such negative side effects. When I tried Escitalopram, I lost 7 pounds in 4 days I couldn’t eat, drink or sleep. My doctor said it would take 2 weeks to adjust. I told her I wouldn’t live that long.
I had no side effects with Cymbalta. Good to start slowly, 30 mg, and build up to 60mg.
If you're very medication sensitive, Cymbalta comes in 20 mg.
Good to know. I didn’t know I was medication sensitive but apparently I am. I tried 2.5 mg (half of the smallest dose possible) of Escitalopram. I couldn’t believe how sick it made me
Medications are largely processed by Cytochrome P450 enzymes, levels of which are genetically determined. That's one of the reasons why one person can have virtually no side effects from a given drug and another will experience every AE known. It can also factor into why you respond well to one medication and not another. This site has a good explanation of CYP enzymes; selfhacked.com/blog/cyp-enz...
BTW, I'm not endorsing the pharmacogenomics report they offer. These types of genetic tests hold a lot of promise, but I'm not sure they're really useful yet.
I won't pretend to understand the science, but it would appear that I am a poor metabolizer. My PCP said some people just cannot take SSRI's and that genetic testing would need to be done to prove that (which I don't see the point). I have an appointment tomorrow to discuss my options. I feel pretty confident that my insomnia is anxiety induced.
Are you looking for anxiety or for sleep? Which one? If only anxiety or only sleep, then it makes a difference what is better to use, and which might allow them for you using your alprazolam as a backup, which is what your doctor seems to be telling you, right? If you get the right thing for the right problem, then there's a number of things that will help without interfering with your doctor's wishes and which won't require you to give up your Xanax as your final backup..
A great many people have been on duloxetine for up to decades without complications, and it seems to be useful for some forms of pain, and some forms of anxiety, along with its natural antidepressant effect, so seems to be a very safe alternative if it helps you, and a lot of physicians and nurses will prescribe it without concern... And it can be prescribed concurrent with clonazepam or xanax as is appropriate, so it's not like you have to lose those if you use them as well. But when you have benzodiazepines mixed in with an antidepressant, we're using the benzodiazepines on a long-term or chronic basis, then there has to be some careful and thoughtful looking into managing them or balancing them, so that you don't become chronically dependent on the benzodiazepines .. because that dependency is not good. So in any case you want to go with the philosophy of "the lowest effective dose that gives you what you need," i e the lowest dose at which you find effective. Try to make that stick.
So best is to maybe start off with things like melatonin and Benadryl for sleep (but not anxiety), and magnesium can go along with them in combination, so you can do some playing around and all these are very safe compared to getting into the prescription anxiety meds, which means you can use those anxiety meds as episodic backup rather than as chronic..
.
Clonazepam at a low dose does help with sleep quite a bit, that 0.5 mg is actually more than I start with, when I needed it for anxiety or sleep I would start with 0.25 mg (use pill cutter or your teeth or just break it in half along the line with your two thumbs), and that amount usually was pretty effective and since 0.25mg is a very low dose, clonazepam shouldn't be a problem unless you find yourself using it to three or four times a day or having to graduate higher doses and be chronic. Also clonazepam can give you a bit of a draggy, groggy hangover the next 24 hours. Xanax, on the other hand, is going to have a much shorter half life than clonazepam, so when it affects you it's going to affect you more acutely, which means you get more relief, but it may become a little problematic because it means you're going to be dosing more often which I would avoid if I can, because of the chances that you gradually become dependent on it and becoming dependent is not something to have. But that is because Xanax is always been more powerful for me than clonazepam, so I would reserve it as something I don't want to be taken constantly or chronically. But Xanax is pretty effective for both anxiety and for insomnia, and it can cool off your outer body as well because it relaxes some of the muscles in your skin which means they give off heat and you feel quite a bit cooler.
.
It looks like somebody else above is really sensitive to clonazepam... and I think if you find that it helps you, then I would use clonazepam for a combination of sleeping and anxiety with a very low dose because the lowest dose you can get relief from is the best one, and I've always found it is very effective at a very low dose, 0.25 mg clonazepam is a great starting dose for you to try. And clonazepam is a bit longer acting... But as I said that long half life means that if you start going up to the upper doses, you're looking at it's metabolites accumulating in your system which you don't want. When you start getting into the 0.5 mg or more TID or QID then you have to start thinking very hard about how it's going to accumulate in your system because of that long half life. It's always best to try for the balance of benefit with as little of any benzodiazepine (both Xanax-alprazolam, and Klonopin-clonazepam) as you can get on with. That's why I suggested starting with the over-the-counter things (for sleep), unless your anxiety is so much that you must have an anxiety med from your doctor.
.
A little about short-term versus long-term: Whenever you have a chronic condition, you really need to talk with the doctor about how to go about managing things long-term, because long-term benzodiazepines are not that great for you. So if you were thinking this may be a long-term issue for you, you want to talk to the doctor early on about how to manage things going forward for a long-term management plan. At the proper time, at the moment I guess you are new to this so you don't know if it's going to be a long-term issue or not.
Thanks for the info. I feel pretty confident my insomnia is being caused by anxiety. I've tried several things already that didn't work (Melatonin, Benadryl, OTC sleep aid, CBD, THC, Ambien, Hydroxyzine, Trazodone, Propranolol and .25 mg of Xanax). Xanax has been the only thing that allows me to fall asleep and stay asleep. I take the Xanax during the day on rare occasions. I am also in the process of trying Cognitive Behavioral Therapy, acupuncture and meditation. My movement disorder doctor said he was fine with my trying Cymbalta. I am seeing my PCP tomorrow to discuss my options.
You could try St. John’s wort and rhodiola rosea.
nz.iherb.com/r/swanson-full...
These are a mild ssri and dopamine /seratonin regulator.
Also high dha fish oil.
nz.iherb.com/pr/carlson-eli...
And make sure your bloods are ok for b12 and folate .
Thanks for the info. I am actually seeing my PCP tomorrow and plan on asking for blood work to make sure I have no deficiencies. I have a friend who just started a folate supplement and she said it really helped her.
Just make sure all b vitamins are in the bio active form so ie not folic acid or cyanocobalamin or pyridoxine.
My husband takes 1x 5mg Melatonin at night as well as 2 Magnesium and 1 venlafaxine, which is a very low antidepressant.
Thanks for the info. I have tried 3 different brands of Melatonin (2 pill form and 1 liquid). They didn't work for me but did give me a headache the morning after. I already take Magnesium . I see my PCP in the morning and am going to mention the Venlafaxine.
I’d suggest trying PD meds. They help me a lot and I don’t have tremors. I do have dystonia, gait issues freezing, and many non motor symptoms
Thanks for the suggestion. My Movement Disorder Doctor said I could go on PD meds when my tremors became bothersome. I am trying to hold off as long as possible because of the dyskinesia risk. So far, my tremors are only affecting my non dominant hand. I know that will change.
Apparently, it won't necessarily change. So don't convince yourself. Also, my diagnosis made me worse, much worse. I think I would have been better off not know tbh.
I totally agree with you. I thought I probably had Parkinson’s based upon my symptoms but getting a positive diagnosis after getting a DAT scan made things so much worse. In July, the general neurologist couldn’t even detect the tremor in my hand. It’s much worse today (but still mild enough I can hide it). I wish I had never gotten confirmation.
I haven’t told any family or friends about my diagnosis yet. My kids will be devastated. No point in them knowing when there is nothing they can do. I asked my therapist if she thought that was the right decision, she shrugged and said it was hard to tell.
You may be able to hide it for a while, but knowing you're keeping it from your kids will not be good for your nervous system imho.
30 mg mirtizipine before bed helped by husbands anxiety and tremor.
Thank you for the suggestion. I've made note of it and will discuss with my PCP tomorrow.
Melatonin might help you sleep. Also, exercise helps with sleeping and slows the progression of Parkinson's.Good luck!
Re melatonin: You might want to check out chartist's reply here: healthunlocked.com/?utm_cam...
Music is sometimes very helpful for me. If you like classical music maybe try wfmt.com/.
Thanks for the suggestion. I've tried melatonin and had absolutely no luck with it. I do exercise though...I get 10,000 steps and an hour of cardio in everyday and lift weights 5 days a week. I know exercise is key so I'm doing the best I can. Thanks for the good luck wishes
I have tried melatonin with absolutely no luck. It was the first thing my Movement Disorder Specialist recommended. I do exercise everyday. I'm hoping it keeps this horrible disease slow moving.
You can try Lithium Orotate 5 mg of Lithium Element (~ 125 mg LiOr). If 5 mg is not enough after one week or so you can increase the dosage by 5 mg up to 45 mg maximum a day.
One of my best friends, who happens to be a psychiatrist in another state, just made this suggestion last night. She wants me to wait to start it...especially if I start on Cymbalta.
When my husband started levodopa/carbidopa initially at a very low dose that was slowly increased (a strategy the neurologist uses to avoid the nausea that some experience) the first symptom that was alleviated was his anxiety that had presented as an impending sense of doom.
The point Ashti makes seems important. Maybe you could try a very low dose of C/L just to determine if it's the PD itself that's responsible, and then make a decision whether or not your QoL is improved enough to continue? I probably wouldn't be suggesting this if you hadn't tried so many things already and didn't seem so distressed. I don't have PD, but I have experienced prolonged anxiety and wouldn't wish it on my worst enemy.
I am really trying to hold off on the levodopa/carbidopa because of the dyskinesia risk. My Movement Disorder Specialist said there was no advantage to starting early. I know eventually I will have to. My anxiety during the day is manageable because I stay busy. At night, my mind goes to places it shouldn't.
You could consider Theanine and/or Valerian.... both increase GABA so decreasing anxiety and helping sleep. Yoga Nidra is also really beneficial for decreasing anxiety and 're-setting'.
My Cognitive Behavioral Therapist has me doing some deep breathing exercises at bed time. I woke up a couple of weeks ago in the middle of the night with a panic attack and breathed myself through it. I had not heard of Yoga Nidra but did a 20 minute Youtube video last night. Will take some getting used to but I liked it. Thanks for the suggestion. I've heard of Valerian but haven't tried it. I did try Theanine several weeks ago and it made my heart race. Maybe I took too much?
It’s natural to feel overwhelmed by a Parkinson’s diagnosis. Allow yourself time to process it and seek balance with rest and activities that bring joy or a sense of calm. I found apps like Calm help when sleep is interrupted and the monkey chatter starts. Although anxiety can be a non motor symptom too, I think the anxiety you are experiencing has more to do with getting the diagnoses. Try and stay engaged and seek out support from others in the same boat. I was put on Sinemet right away by my neurologist for the anxiety, and not for the motor symptoms. I wish I had waited
Can I ask why you wish you waited? I've been waiting as well...primarily because of the dyskinesia risk.
I see a Cognitive Behavioral therapist every week. It does help to talk about it.
I agree with Missy0202 and her advice reflects my own experience. I was diagnosed early this year and immediately started to suffer intolerable anxiety which was so bad at night that for a while I dreaded going to bed. After a couple of months everything subsided and now I rarely get an attack. I take no medicine. I think part of the improvement was due to acceptance of my condition and counting the many blessings I still have in my life. The other part was exercise and diet and engaging in hobbies and finding things that engage - making myself more physically and mentally resilient.
I followed the same path. Right after my diagnosis, my anxiety was terrible. The chest pains were so bad I thought I was having a heart attack...but I knew it was a panic attack. The daytime is much better now. I stay busy during the day, I exercise regularly and I'm staying social. Like you, I have many blessings in my life. With the exception of the tremor and some loss of dexterity in my left hand, there is nothing I cannot do. I still lift weights...my arm just shakes a bit but I am determined to keep my strength up.
I also agree with Missy. You've just had an enormous shock and you need to take time to digest it.
I would advise you to read about PD and become knowledgeable of your disease. To me it's a bit excessive to take medication to help you sleep this early on. There are lots more natural ways of getting to sleep anxiety and stress don't help but they are part of their condition.
You can research B1 on this formum a lot of us are found it very useful. I also take mannitol ( artificial sweetner) and have found that brilliant to curb my apathy.
Exercises are good, cure for anxiety and the helpful for the PD
good luck and ask anything you want on this forum
Thanks for your response. I do feel better after I exercise, although my tremor is worse for an hour or so after I get done lifting. Mentally, I am doing much better than I was 3 months ago, it's just the inability to sleep. Why do you use mannitol?
I hv taken mannitol for years. If i remember it as a brain protector but i hv found it amazing for my mood. With it, I am glass half full without it. I couldn't care if i lived or died.
It also a natural product
I also sleep regular eight hours a night
Just an anecdote as you're deciding whether to try another med. Many moons ago my sister was in college and suffering from debilitating panic attacks. The first doctor she saw put her on Xanax, which was miraculous....at first. She quickly became dependant on it, and started having attacks as soon as the last dose wore off.
My parents got her to come home and see their psychiatrist, who put her on Prozac, the only SSRI at the time. The 20 mg starting dose made her anxiety worse, so he got her to dissolve the contents of the capsule into water and take a tiny amount every day. Took a while to get to a therapeutic dose, but was worth it in the long run, as she was able to taper off the Xanax.
I think quite a few meds come in liquid form these days, so something else to consider with your doctor.
I am aware of the risks of using Xanax. It's unfortunate that it's so addicting. When I was first diagnosed, I would take .25 mg and feel sane and positive for 12 hours. I use it rarely now during the day and only at night when I am in desperate need of sleep. I see my PCP tomorrow and want to discuss other options with her.
Oops, I didn't mean to sound judgmental about Xanax, was really just trying to say that sometimes really small doses of a new med can help circumvent side effects. Good luck with your consult tomorrow. 😊
I didn’t take it as judgmental. It’s just unfortunate that’s the only thing that’s helped so far. I’m hoping if I can get on an anti-depressant or anti-anxiety med that helps during the day, maybe that relief will carry over to the nighttime. I’m so tired of laying awake for hours. My husband is tired of me tossing and turning but he’s been incredibly supportive. I hope my PCP is willing to work with me.
I am fighting with YOPD since my early 30,s now I am 58 and I am still active . I agree with all the others and al the advices are best .I am simply want to give you two ideas :
1. Check if you don’t suffer of insomnia caused by other pills you take for Parkinson’s like MAO - B inhibitors , Selegiline SELEGOS or Raselegiline -AZYLECT but Amantandine -SYMMETREL or GOCOVRI also tb with extract of Ginkgo Biloba —TANAKAN or BILOBIL .All are recommended to be taken last dose before 18:00 to avoid insomnia.
2. I suggest you to discuss with your neurologist and your psychiatrist about a low dose of LevoDopaCarbidopa late but if you have gastrointestinal problems better a transdermal patch with Rotigotine — NEUPRO min dose of 2 mg . It is an agonist dopaminergic AD like Ropinirol - REQUIP Mobutab extended release tb or Pramipexol MIRAPEXIN . I saw on Mayo Clinic recommendation for sleeping in PD with depression __Prozac + Melatonin but only your neurologist or psychiatrist is capable to decide if is good for you and at what doses
Magnesium glycinate is recommended before sleep and take lL - threonate in the morning . Exercise is very good but not late the best is in the morning recommended.
Keep yourself occupied and try to do something you like best or maybe you return or or discover new hobbies or maybe you like playing games .
For sure respect the hygiene of sleep and my advice is to go in bed earlier then 21 :00 every night .
Success and sleep well !
Thanks for the response. I currently do not take any PD meds. I do take a lot of supplements with dinner (which I have done for years) but am going to switch to taking them in the morning. I didn't know there was a transdermal patch. My movement disorder specialist has only suggested sinemet. I'm making note of that and may discuss with him at my next visit. I take magnesium with L-theonate in it before bed. I saw my PCP this morning and she felt that my insomnia is being caused by anxiety. I'm going to try Cymbalta and hope my GI tract can handle it. Happy for you that you've been dealing with this for years and are still active. You are an inspiration!
Fasciculations ? Muscle twitching that is muscles you didn’t even know you have? Sensation of internal twitches? 
Anxiety when meds wear off.
Newbie, not on medication, seeks advice on starting High Dose Thiamine B1 therapy please 
Back on meds
