My husband has terrible anxiety which is affecting his symptoms. He was on mirtazapine which turned him into a zombie but has weaned off them over 3 months under dr supervision. But now he is suicidal with anxiety but says he isn’t depressed.
He has tried ashwaghanda, bacopa, kava (bad reaction). He has emergency diazepam to get through a particular bad episode but can’t take these long term.
What do you advise for anxiety that doesn’t affect ability to think ?
Clonazepam helped a friend but doctors say it addictive but if it helps and keeps your life on track that must be better than living feeling like a zomie .
Hello LAJ,
Sorry but not two people will need the same medication for identical anxiety symptoms. Very frustrating, I know. I have had to try many different molecules before having something that helps me (that is amitriptyline).
I believe you can get a DNA test which tells you what medicine is best for you. Check out genesight.com
L-theanine
My son was DX with PD for three years until he was re-DX with PSP. The L-theanine helped his anxiety considerably. He took it 3X a day.
I believe there are studies on the efficacy of this amino acid.
Thanks, I will loook into this
If HDT doesn't work for your husband's anxiety (it has in some people), L-theanine might be an alternative worth considering and has shown benefit for depression and anxiety in human studies. The following study used 250 mg / day to good effect.
ncbi.nlm.nih.gov/pubmed/273...
The following study suggests that it may also have neurological effects that may also be of importance to PWPs.
ncbi.nlm.nih.gov/pubmed/238...
One last study that shows that it can work with Pregnenolone to help quell anxiety at 400 mg /day plus 50 mg / day pregnenolone.
ncbi.nlm.nih.gov/pubmed/262...
What does it cost and what strength is readily available? The price varies and most products are 200 mg and there are some 100 and 400 mg available also. The studies above give a clue on dosing.
amazon.com/s/ref=nb_sb_noss...
Art
Thanks Art, I will look into this. Does HDT usually help anxiety?
Yes, it is on the list of 80 benefits (#36) that the members reported for that post that I put up on the forum about the benefits that forum members have reported from their use of HDT / B-1 and one of my friends with PD found that relief of his profound anxiety was one of the first benefits that he noticed within the first two weeks of taking B-1 / HDT. He told me it was very effective for him and that his anxiety made him feel really bad everyday. Here is a link to that post showing 80 benefits of HDT / B-1.
healthunlocked.com/parkinso...
Art
It is not cheap. The main ingredient is patented by the name of Suntheanine so read the label. It stimulates alpha waves in the brain. My husband, who required more of any med titrated up to 400 mg every four hrs with last dose at dinner.
Here is an article that discusses the difference between L-theanine and Suntheanine. It reminds me of the difference between pine bark extract and Pycnogenol....mainly price. The effects seem similar.
nootriment.com/l-theanine-v...
Your husband was using a dose that is extraordinary by any standard and way above the dosages in the studies I linked to and those studies used L-theanine.
Here is a link for a typical Suntheanine supplement of 200 mg each softgel (60 softgels).
amazon.com/Suntheanine%C2%A...
Here is a link for L-theanine supplement of 200 mg each capsule for 120 capsules
amazon.com/L-Theanine-200mg...
So yes, Suntheanine is significantly more expensive and when you search PubMed for Suntheanine, it only retrieves three studies and no comparison studies comparing it to L-theanine. On the other hand, a search of L-theanine on Pub Med retrieves 171 results.
Art
Hi Art! I checked it out and there are s0me 250 mg available on Amazon. Off topic, I discovered that B1 vials contain aluminum. I emailed Dr. C. and asked his opinion/advice about continuing the injections or going the oral route for safety reasons.
Hi Despe,
I was only able to find 100, 200 and 400 mg L-theanine capsules on Amazon. I didn't know that you were planning on giving Ray, l-theanine?
On the HDT injection topic, please let me know what Dr. C has to say and maybe I can add it to the "thiamine primer page".
Art
Art, I posted about B1 vials containing aluminum at least here in the US. I also emailed Dr. C. yesterday, but I haven't received a reply. Waiting for his guidance although I am thinking switching to oral B1. My husband is now very reserved continuing with injections. Will see. . . end of 10-day break for new dose is coming up this Monday.
Yes, he is a little depressed and would like him to try L-theanine.
My husband takes Lorazapam when he has a panic attack, but not every day. L-theanine sounds interesting, i might look for it on Amazon. I have a cupboard full of stuff we constantly try.
You cannot take diazepam as it affects part of the brain which controls movement. My husband was in a wheelchair for a year until out brilliant new doc took him off....he was up and walking within days. Please try l-theanine, a harmless amino acid which I have written about numerous times. You will have to start lowand titrate up. Also lavender caps by Integrative Therapeutics (only ones who make an oral and you can’t use esssntial oil orally otherwise). These two conquered my husband’s terrible anxiety.....the last two years of his life, suffering the worst of his PD, were completely relieved of anxiety for the first time in 15 years.
Is l-theanine in green tea? I have just started him on restore gold today and it has green tea extract in it 4 x 200mg per day. Is this likely to have enough l-theanine in it?
Please keep us updated on your husband's progress whilst taking the Restore Gold - I'm interested to find out if he has any symptom improvement. Thanks.
Ok, I might start a new post/ diary on it as I expect lots of people are wondering about it. I decided we might as well go all in! Hes on mannoseand HDT as well as all the usual vitamins too.
What isHDT?
HDT = High Dose Thiamine
healthunlocked.com/parkinso...
Art
And I was the first to recommend theanine!!!my husband was using it three years before he passed away two years ago. So now it’s called HDT....hahahahaha! Good!
No, HDT is not L-theanine or Suntheanine. HDT is vitamin B-1! Not the same at all, not even close!
Art
Thanks. We used high dose b complex working on the theory that some have that taking one B of the complex might diminish the effect of others. That said, high doses of niacin (1000 3x) cured his hallucinations.
We used both l-theanine and suntheanine and found no difference in the effect.
Regarding the large dose....we had tried theanine several years before at ‘recommended doses’ and stopped because we saw no results. Later revisited it at higher doses at recommendation of our wonderful MD naturopath. As I said somewhere, my husband required 1/2 again as much of almost any med....something his mother and our daughter require as well. Even so, it is pretty easy to titrate because when one gets to the dose where you feel really comfortable and then find the next titration has undesired effects such as anxiety or interference with sleep, you’ve rounded the bend and need to return to the prior dose. The effect only last about 3 1/2-4 hrs.
I have never given too much importance to the recommended dosages of studies as those doses are just what they are...those doses and must be adhered to in the study subjects. There isn’t any leeway to say. ‘Oh, these twenty people didn’t get any effect from this particular dose so let’s raise it and see if they get relief’’. My husband, for example, would have gotten no relief at the recommended dose but a considerably higher dose would have helped him. With some substances, the possible side effects prevent giving more but this is not the case with theanine. Some studies will provide for an increase in dose to see if more or less will produce the same effect but a lot of them don’t. They are looking for certain number of results for a certain number of people, not necessarily all people, in order to say the effect is ‘significant’. I sure from your writing that you know this...I’m just saying it for general consumption.
My conclusion, therefore, is that one must not be a slave to the ‘recommended dose’
as it only means this is the point where this particular substance helps this particular number of people....not ALL people (who may or may not be affected by more or less of the substance).
I take Duloxetine, (cymbalta), for depression and Fibromyalgia plus anxiety tho have also taken Xanax but found that it can conflict with my pain med. increasing my IBS. I don't have PD but my husband does, for over 5 years and only takes Sinemet. He did take Resigiline but it possibly caused high blood pressure which seemed to cause unexplained falls. It might've helped with his leg stiffening but he choses to just take Sinnemet, only at night but will have daytime sleepiness which I take Provigil fot. He wants to avoid Deskineses from too many meds. But something has caused double vision in one eye after cataract surgery and we don't know if it's a result of that, or PD. I do sincerely hope you can find something to help. I still struggle with it but don't want to add another med. Watch out that homeopathic methods don't cause a bad reaction too, like Valarien or Meletonin. The best of luck....M.A. in USA
Thanks. Yes last night was very traumatic as he was beside himself so have seen mental health services today and will see what their doctor suggests. We are reluctant to use pharmaceuticals but if the theanine doesn’t work we might have to as he anxiety is making everything worse.
I'm so sorry. I'm interested in what mental health services says. I have a friend who has mental health issues...Bi Polar and a certain kind if psycotic...but her meds keep her on track. Seems normal to me but if she feels a psycotic break coming on she'll check herself in to a mental facility....sort of a Time Off place. Doesn't happen often but I don't know what would happen without meds. She's very intelligent and has a degree in art, lots of family support,....driving her places, as I do too, but also makes use of available handicap transportation. She uses a walker due to balance issues. She's coping well.
How does your husband's anxiety manifest itself? For me, I just want to hide from everything. The Holidays are terrible. I will buy gifts and then not want to give them for fear of appearing silly. I'll start with what I think is a good idea then question it over and over, buying other things. I have no self confidence. The thought of taking good care of my husband when PD gets worse terrifies me, as I'm sure it does him too. He fell onto parking lot Sat. eve by walking on grass instead of walkway. He hit his nose mostly, and hand. Others helping him up was the worst, feeling like a helpless old man. We're mid 70's. He wears slip on sandles which were at fault I think. We just want to bury ourselves at home. Is your husband's anxiety like that? I was like that in pre teen years...was afraid of school for no reason, missed a whole quarter but was passed anyway thanks to understanding teacher. Parents were divorcing and I didn't know it until later...then moved. If not tho, would never have met my wonderful hubby.
I'm rambling....sorry....hope things go well....M.A. in USA
Please don't forget the benefit of seeking out others in your situation, whether it be caregiving or the one with PD. It is such great comfort to know we're not alone in this struggle. Plus, you also can get recommendations about what others are doing for the problems.
Thank you. We do have a PD support group but haven't been last 2 mo. It's hard for me to reach out and it seems he just doesn't care anymore and it was his idea to go to that and exercise classes a few years ago. Hard for either if us to want to go anywhere but have enjoyed a couple of H.S. grand daughter's school play and basketball game. We're just feeling old I guess. M.A.
This is such an unkind illness. I know that's true of many but this is the one I have. There are many days where I just want to let the apathy win and do nothing but if I do then my anxiety and depression kick in. Those are pretty good motivators.... So far.
Oh my, how I envy my friends who are simply growing old.
His stress means he can’t sleep , he cogitates over everything, worrying about anything. It is school holidays so he gets worse in holidays as kids aren’t peaceful! He is a bit ocd so they leave stuff hanging around and make noise and wear their hoodies at the dinner table and don’t do their turn at dishes the moment dinner is finished and stuff like that which sets him off. And being kids they like to push things a bit further and see what they can get away with.....
The last straw is he is suicidal and planning methods so not good, but at least he tells me so I can keep an eye on him.
I think I know partly how he feels, anxiety and sleep, tho I'm not OCD. Having to watch for suicide is awful. I've had a niece and bro in law do that. All the best to you....M.A.
I worry about the effect on our kids 13,15,17😣
Ok so mental health have given him sertraline (Zoloft) for long term depression and anxiety, and zopiclone for sleeping if required, and clonazepam for emergencies if very anxious to immediately calm him on top of the regular long term one.
also cbd oil is good for anxiety
I just started on medical marijuana gummies, theyork great for anxiety and also sleep
Our State just legalized medical CBD oil with restrictions on everything else envolving it. I may try that. I bought Hemp oil but it's not the same. Do you know the difference? My Dr. is favorable but I have to be careful of adverse reactions with meds. M.A. in USA
I assume the medical has both THC and CBD in it. I’m going to try the oil when they get it in stock
Oh, I love those MM gummies, but it is not good because I don't want to stop eating them!
Art
I believe you! He does qigong. He is a very technical person so it is hard to convince him to do things he thinks are not logical to him. So physical exercise he can understand, but emotional trauma stuff he doesn’t believe. We went through all the earthquakes in Christchurch in 2010-2011 and then had a 3 year battle with our insurer over our insurance and I think that badly affected him.
What kind of profession is a neurocoach? Is it a counsellor?
Anything with marijuana is illegal here in NZ
So in New Zealand if I want to find this type of coach what would I look up? A Neuocoach? I have not heard of it.
Hi,
My husband had terrible anxiety at the beginning stages of his PD. This was totally out of character for him. Unfortunately he also has a pronounced sleep disorder, so any meds to treat anxiety put him to sleep, at work! (Ativan, 5mg!) Eventually they went away, no idea why. I wish that I had helpful advice, however, I wanted to write because your post fascinated me. "Suicidal with anxiety but is not depressed"..very odd. My husband has "apathy" often confused with depression but kind of the opposite of depression in many ways...a total lack of concern for anything. Is he seeing a Neuro Psychiatrist? These types are able to take a different approach to meds...more knowledgeable on the mood side of things rather than the Movement Disorder Specialists. Ours was helpful.
Yes I think he had bad apathy on the mirtazapine which stopped him exercising or getting out of bed or communicating or taking an interest in anything or anyone which is hard for the kids, but without the drug the anxiety is overwhelming. He says he doesn’t feel depressed as in overwhelmingly sad, just the anxiety is so overwhelming he cannot stand it any more so would do anything to make it stop.
Hi Farum, that is very kind. He is in a bit of a state at the moment so won’t be receptive to new ideas at the moment but if he is feeling better in a few days can I contact you then?
I am sure it is stress. We had large earthquakes in our city in 2010-2011. More than 10000 in one year. And then had a 3 year fight with the insurance company to get our claim.
My hubby and I both have apathy. He doesn't want to do anything that he did before for PD. We don't really look forward to much. His double vision in one eye is a big irritant. Could be weakened nerve but Dr. doesn't know for sure. He says he's not depressed. Your hubby's anxiety sounds terrible. My Fibro and Epstein Barr virus just makes me feel that it's too hard to do anything....a lot of fatigue and depression which is more than saddness. Apathy a big part. Decisions very hard. All feels wrong. Feel worthless no matter what logic may say. The med.Provigil will help me but then get irritable when it wears off, despite antidepressant, Cymbalta,Duloxetine, taken for years. No one really knows how we feel but each other....must appear happy for kids and grandkids. M.A. in USA
Sounds awful. I was becoming a bit apathetic before his diagnosis in May because I didn’t see why I should have to do all the chores but now it has given me a shake up that I need to get on with it so I keep active.
Good news is just one day of the sinemet at 1 pill plus the Zoloft seems to have calmed his nerves considerably and he seems to be taking an interest in some things yesterday. Eg wanting to watch a documentary on the gut I was watching and saying I can put the Christmas tree up where normally the tree would send him off into fits of anxiety at the thought of Christmas,
Nov. 30 was 12 th anniversary of oldest daughter's death from breast cancer, ended up in brain at forty one. Then Sat. went to her daughter's wedding shower with my other 2 daughters. It was at home of brides step mom and her dad, big lovely house, beautifully decorated as she owns antique stores. It was nice but.....cannot express it. I am happy for grand daughter but have other feelings. My daughter had such different tastes...very simple and totally devoted to home schooling her three girls. The oldest is getting married in May. She and second, the bride, go to the same Univ. We went to youngests H.S. basketball game earlier in the week....that was fun. They easily won. All three have had things to deal with and their dad has handled raising them great...remarried only two years ago. I like new wife but I am feeling outside tho do not show it. He and girls were, well, slobs. This new place totally different. I do not know how she unslobbed him but now I am the slob being unable to get things done....anxiety high. They visited, with two of girls and a fiance day after Thanksgiving for some unknown reason and I was a wreck with my small livingroom. Hubby seems ok but I know that the clutter if Chr. gifts in our bedroom annoy him and, frankly, I do not know how to handle giving them to family. Maybe I should not have gotten them....most on internet. I get ideas and then later question them. I have tried just giving money but I do not like that. There are over thirty to buy for. Frustrated right now that IPad is not letting me write numbers, and accents. Guess I will quit. Sorry I have babbled. Understand your hubbys anxiety. Need to start decorating too and body says no. M.A. USA
Yes Christmas is particularly difficult. Can you ask a family member to help distribute the presents? Will you see them all at Christmas? Or post to each family? My hubby hates the clutter of presents and tree too and wants to hide from Christmas but youngest child is only 13 so not fair for kids to miss Christmas.
I found my husband's anxiety and depression linked with his Sinemet - when he was 'off' things got noticeably worse, and when he was 'on' he was ok. He also takes mirtazapine - prescribed as much for sleep as anxiety; and he went through a Cognitive Behavioral Therapy program that also helped... but the Sinemet is the most consistent factor
Oh, good to know. My husband has just started sinemet and seems considerably worse in all respects this week. He is on 1 tablet in the morning so far, suppose to go up to 2 this week. Do you mean the sinemet is causing it or that it is helping it so when it wears off it is worse ? His anxiety is through the roof at the moment. He had been on mirtazipine but it was making him sleep all the time and turned him into a bit of a zombie in that he didn’t want to do anything or go anywhere and had a blank look on his face the whole time. He is 58 but he seemed like a 85 year old in a dementia unit. He came off mirtazapine over 3 months and seemed fine for a few months but now anxiety is out of control so the put him on sertraline (Zoloft) which seems to be making the anxiety worse and now he seems out of balance like he is going to fall backwards , dizzy, suicidal and depressed and can’t sleep. They have also given us sleeping and anxiety meds on top of this which are for emergency but they are addictive so he is resisting them but he really is in a state.
Omg just read that mitzapine isn’t a grt med
I am so scared now to take it
I do great on mirtazapine and weaned off with without issue last year. Just restarted it. I only take 7.5mg (1/2 pill a day). Only side effect is increased appetite.
If you do take it try a much lower dose than the dr prescribes as it may be enough. My husband is down to 2mg per day and about 38 mg of sertraline. I’m slowly weaning him off again as he went off it last year and had a rebound withdrawal several months later. I would think starting low would be better. See if it is enough. Ask sharoncrayn about antidepressants as she has strong views.
Personally if I knew then what I know now I would have tried to keep him off them in the first place as I think they cause half of his symptoms.
Husband ANXIETY is getting REALLY BAD
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