Help. Suddenly much worse: My husband... - Parkinson's Movement

Parkinson's Movement

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Help. Suddenly much worse

LAJ12345
LAJ12345

My husband was doing really well pre lock down and now even though in NZ we are back to normal he has taken a big step backwards with symptoms. He had been getting stiffer so has tried to take the C/L kinson which made him very nauseous so he was unable to take enough to do anything. He has just changed to madopar instant release little blue capsules. He has been taking 4 per day 5 hours apart. While his mood seems to have improved a little he is now having much more difficult with movement. Especially getting into bed. He can’t get comfortable and is up and down. Last night he got up to go to the toilet and was disorientated and banged his head on a wardrobe in my sons bedroom.

He is becoming excessive anxious and agitated and worried about his condition which seems to be getting worse. On the up side he is starting to a bit more like empty the dishwasher, put washing away etc which he hasn’t done for a while.

He has been taking 1g thiamine for a while, 1.5 before that and has tried up to 3 g a year ago. He also tried stopping it for a week when he was very anxious a month ago but it didn’t help so went back to 1 g. Now I am uncertain whether I should try higher or is it too much. Or has he progressed and it’s not helping.

He took mannitol for much of this time. Ran out a month ago and had a few weeks off it it which also coincided with anxiety getting worse and has been back on it for just over a week. I’m not sure whether it was more the lockdown rather than any chemical cause causing the anxiety although the kinson C/L seemed to bring it on. I feel like dopamine added as medication seems to cause him more anxiety as well as motivation. It is almost like his brain interprets motivation as anxiety.

Not sure what to do.

68 Replies
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Anxiety is sure to make whatever else may be going on a lot worse. There are a number of ways to tackle this. If I start to stress out over something, I find that conceptually surrendering to whatever outcome I am afraid of helps. On the physical level, intentional deep breathing helps. There is also spiritual/meditation practice – Qigong works for me. Or counseling - a professional is likely to have more and better ideas. Or, last resort – psych meds.

LAJ12345
LAJ12345 in reply to park_bear

Thanks for that. I agree with you. Unfortunately I can’t persuade him to try these things that might help. He is very reluctant to do anything new or that he feels he won’t be good at.

So sorry to read this LAJ.

Anxiety is very common in PD and I believe it is due to the disease. Panic attacks happen too and they can be very debilitating and scary. We have been out of lockdown for sometime now so I wouldn’ t put his anxiety down to that and I would mention it to his neurologist now before it gets worse.

I personally think he is on too little c/l and may not be getting a therapeutic dose over 24 hours. If he has trouble with kinson then give it to him with food until his body adjusts. Sounds like he needs a good review of his meds treatment but if you stick just to the alternative route I think his anxiety will not improve.

LAJ12345
LAJ12345 in reply to Hikoi

He just had a review with the Pd nurse and she advised madopar so he has switched to that this week. Lots of his symptoms seem worse with it this week like the agitation and he has never had so much trouble getting into bed as he did last night.

He has been anxious the whole period of lockdown which I think is partly due to bridge being shut down which is his only social activity and he was doing bridge directing as a wee sideline just before lockdown which was making him feel very good. He was obsessing over the news.

We also had annual tax return to do and tenants give notice which I can handle myself but he can’t help but cogitate over this sort of thing.

I think his brain confuses the dopamine motivation feeling with anxiety and if he hasn’t got something to channel that into it causes the agitation. SSRI does this to him too. I know I had hos genes analyses 2 years ago and his mao-a gene that oxidises seratonin and dopamine, epinephrine and norepinephrine has a defect that means a lower expression of mao-a. Also his folate genes and detox genes all have mutations which make detoxing slower than usual. Hence the problem taking pharmaceuticals I think.

Interestingly I gave him a turmeric capsule with dinner, and now looking at his gene report it says avoid curcumin and cumin. I wonder if that made him worse last night. We eat quite a bit of turmeric and cumin in cooking too. Maybe I need to cut back on it.

MarionP
MarionP in reply to LAJ12345

I would stay away from turmeric due to the fairly high chance that it is adulterated with lead to help make the color that appetizing yellow that consumers so prize.

As to your comment about genes, that seems spot on, meaning ways that could increase his mao production might help, whatever those might be, to research that a bit...and please consider that this is one area where clonazepam could be helpful with getting rest and the feeling of being rested as well as help break that underlying motor anxiety compulsion from revving up into an endlessly increasing and self-perpetuating circle.

Next, do not be persuaded away from considering clonazepam small doses and titrating up to a nice balance in clonazepam due to others' fear and prejudice, it can help and you can always titrate down if THAT prospect makes you anxious...inability to rest and feel rested is a very difficult thing to overcome on one's own and clonazepam can interrupt it, so he can lessen the "obsessing" or at least feeling anxious coping with lockdown conditions, get too zoomed up about taxes, and even helps be more calm and relaxed about newly idling conditions as he adapts to a slower pace for the time being...some of the anxiety is compelled, and that is different than the simply psychological... Think of how difficult it might be trying to implement counselor's advice and to "think good thoughts" whilst being administered small constant electrical shocks, better to first eliminate the shocks with a bit of clonazepam and then you can build new associations cognitively. When the anxiety is driven underneath by a motor process and mechanism, and you are beset by prickles radiating from inside seemingly, it's hard to move your focus...a bit of relief is in order...you must consider fighting fire with fire for a while. Other people may have a prejudice but it will not apply to your case...YOUR situation applies to your case. And lorazepam might be as helpful, you see about trying each and see how the responses are, they are slightly different but essentially similar.

LAJ12345
LAJ12345 in reply to MarionP

Thanks Marion. Clonazepam does seem to help him a bit. He only needs small amounts to calm him. They gave him quite a lot. Enough for 6 tablets a day, and 1/4 will usually give him some peace so he does have that when he is absolutely beside himself. Given his history I’m pretty scared to get him addicted to it as if it runs out I’m not sure the doctor will prescribe more as it was a crisis drug while the other sertraline and mirtazapine kicked in and I can’t get more otherwise.

To me it seems to have less lasting side effects than the other 2.

His gene that makes him a slow metaboliser of pharmaceuticals certainly means he reacts badly to anything in size doses the doctors usually prescribe.

Unfortunately the prescribing psychiatrist thinks any theory involving nutrition and supplements and genes are all unproven and won’t have a bar of it.

And got pretty annoyed with me at our last “chat” 2 years ago. He has the power apparently to seize hubby and commit him to the psych ward and dose him up to his hearts content to prove he is right so I am wary to attract any attention from him! And GP is wary of changing what he prescribed.

MarionP
MarionP in reply to LAJ12345

I would respond thus:

1. Your standard for using clonopin should never be "absolutely beside himself." Once you see what I've written below, to an informed person the idea of withholding something that works is not conscienable, because your sense of the risks may be rather exaggerated or overblown, which must only therefore be the result of misinformation given to you by people whose perception of risk or consequences may be somewhat misplaced and inexpert.

And by the way, you have not mentioned dosing at all, so you haven't indicated at all whether he is at a dose that is counter-productive...the number of pills has nothing to do with the dose. Up to, say, 3 or even 4 mg per day in perhaps 0.5 mg steps is quite safe and useful. I have seen people productively maintained just fine at work and in personal life on such dose ranges over long periods, even years. If you use 0.5mg tabs or 1.0 mg tabs and use a pill cutter, there is a great deal of flexibility to work with different amounts from 0.25 mg per dose on up, and plenty of flexibility with time frames so as to add a bit if the first dose did nothing, and so much opportunity to individually adjust and to notice the effects of various sorts and adjust accordingly to the best mix, because each person's need and response differs uniquely. At these levels it is more like aspirin, quite safe. Any concern about addiction is vastly out of proportion exaggerated, it's been quite useful and helpful on what doctors might call a chronic basis. And even if there should someday develop some sort of dependency, which is not at all likely, gradual withdrawal from this med is rather quite easy. You need to show all of this to your psychiatrist for verification, and have plead with the psychiatrist to then attempt a collegial chat with your GP about management. Believe me, there is more fear of pressure from uninformed societies and regulators bearing on the doctors after having their practices improperly bashed about by the press and those actually mis-using this med than risk of harm or serious difficulty from this medication at these levels. But you would not be expected to know that yet, because it's not your field, and not a GP's field.

2. Mirtazapine is more dangerous than clonazepam, and not nearly as effective an anxiolytic, (true for all the anti-depressants actually), antidepressants can very much complicate your anxiety picture because of their simultaneous stimulating effects, some of which are indirect into the dopamine system via the tryptophan ("serotonin") route, and some of which are a bit more direct into your dopamine receptors...either way, your husband may already be more sensitive to whatever bumps or agonizes his dopamine generally (because most of them work by stimulating or inhibiting reuptake of all three of the catecholamines...which are dopamine, and the stimulant epinephrine (a form of amphetamine..."speed"...) and the less widely calming norepinephrine...dopamine, epinephrine, and norepinephrine are chemical sisters and all three produced from the base amino acid phenylananine.... thus, something like clonapin may be necessary to help cut into the overly stimulative dopamine agonist, stimulator, or uptake inhibitor; yet he still needs the motor help afforded by the dopamine agonist so something is needed to counteract the excess side effect of neural stimulation by that same dopamine stimulator. That's where Clonazepam works well for both over sensitivity on the dopa side and agitation from the amphetamine side...since both of those come with the dopamine agonist...so you use the clonapin to increase the nervous system's natural (and essential) brake fluid, called GABA. Again, your psychiatrist knows all of this, it is his professional specialty after all.

In general, antidepressants should not be used for this type of anxiety side effect, more rather should be reserved for when anxiety is part of a larger depression picture or simply anxiety disorder all on its own...when antidepressants get mixed in with sensitive PWP types then there is a lot of chance of additional complications...again, chat with your psychiatrist about that. No, for anxiety of the kind you are dealing with, best with using a benzo, and among the mildest, most benign is clonazepam. Also, dealing with withdrawing from many anti-depressants is far more difficult anyway. You may need some expert or experienced help in understanding this medication. Your fear reminds me of the problem seen in so many cases where necessary pain control has been neglected by mis-information, which I have found to be cruel and unnecessary beyond comprehension.

3. The idea of addiction is totally misplaced and a symptom of too many people with no sense of proportion pounding too much advertising into both professionals and lay people. In the case of clonopin, the fear has been totally exaggerated beyond all intelligence. But whatever additional or unnecessary suffering you put him through by uninformed or misinformed personal choice, you know best.

4. Your psychiatrist is quite correct about the nutritional and supplement nonsense he criticizes. On the other hand, that is quite a different thing than suggesting the mechanism based suggestions I have made based on an actual genetic test (assuming the test itself is valid, the problems you and he have may be more about that unwarranted assumption on your part when you took that result an unjustified extra step about thinking that nutrition has any significant value at this form of problem). No, what I had meant by my first comment about the information of the genetic test, and even that comment was a little bit of a stretch, had to do with, given the mechanism implied by your genetic test, what to do about it through conventional psychiatric or general medicine. Thus, clonazepam was indicated, not nutrition (except stay away from grapefruit juice) and is quite safe for what is called "ongoing management." Check with the psychiatrist on this and ask the psychiatrist to put it in a report geared to help a GP with understanding, rather than overestimating the risk, which is much more a risk of heat from others rather than safety risk to the patient...talk of addiction INCLUDED.

Oh, by the way, before responding, I wrote the above in stages over a few minutes, so please hang on for this final bit above. Sorry about that.

LAJ12345
LAJ12345 in reply to MarionP

Wow, thanks for taking the time to write all this. You should post this as a general new post explaining antidepressants etc so everyone sees it. It is very helpful!

His clomazapam is 0.5 mg tablets which I cut into 4. Usually 1/4 is enough but sometimes he needs a second quarter. I really feel it has had the least bad effects but all the psych people were very much on the same page that it was addictive and only for emergencies. I found fluoxetine which he took initially, sertraline and mirtazapine all to me seemed to have worse effects but their response to that was to double the dose.

Now he is Only taking 1/4 of a 3.25 mg mirtazapine (I have this compounded from 30mg tablets by a pharmacist) which knocks him out for the night. He is off sertraline as it made him jittery I thought and very anxious. He had been doing fine on just that tiny amount but adding the levodopa meds kinson then swapping to madopar seems to have caused the jitteryness again I think.

Unless it was all the other stressful things happening and that was coincidental.

As for supplements not working, the hardys daily essentials nutrients have definitely made a huge difference and completely calmed him after 3 days last time he was like this, but now they don’t seem to be having the same effect or helping with the levodopa addition.

Unfortunately the psychiatrist was part of the crisis team so not available as private consultant so we can’t see him. So maybe we need to go back to the original woman who prescribed fluoxetine and mirtazapine as she was private. Had to wait 2 months to see her last time. Goodness knows how long the waiting list is now!

MarionP
MarionP in reply to LAJ12345

That is a very long wait.

Ok, first: Your dose of one quarter tab of 0.5 mg equals 0.125 mg and is almost infinitesimally small. My 20 pound dog would not respond to a dose that light (and yes, they prescribe it to dogs). For most patients, safe dose with only sleep and drowsiness as the worst effects (which are actually the desired effect for insomnia) are fine as far as any health concerns you could legitimately have all the way up to 1.0 mg per dose, which is the equivalent of 8 simultaneous of your doses...so you can see the very large "head room" that you have to work with.

In other words, you would put him totally to sleep well before ever coming near that 1.0 mg dose, and that is just a single dose of anywhere up to 3 mg. per day. You have no significant concerns even at 1.0, but you will not approach that for a long time in any case, he'd be snoring long, maybe even with a bit of a hangover after that sleep.

So you are really significantly under-dosing, and so under-dosing would actually be more of a concern. So if he responds at all, repeat, AT ALL, to a 0.125 dose, you are in an exceedingly good range of flexibility to try things to see where they work. I said "exceedingly." No worries at all about dependency or habituation or anything like that, even if done chronically for many many months if not longer (I know of cases free of dependency or habituation for multiple years at a time). You have been as conservative as it is possible to be without actually doing zero, and as I mentioned, for most people your tiny dose of 0.125mg would be almost ineffective for treating anxiety. So take a xanax and relax. (that was a joke).

Second, since you have an experience history with fluoxetine, you already will know some things about that, and about what specifically it was prescribed for in your case. But in general some things to know about prozac (fluoxetine) are:

Chemical: SSRI (selective serotonin uptake inhibitor): It slows or partially interferes with the return of serotonin to the cells that created and put them out into your neural system. That is, it lengthens the time that the stimulant serotonin is in your neural system and "stimulating" your mood up from the depression lows. It also has some (some) anti-anxiety effect. The thing that clinicians always liked about it is that it has a very long half-life, i.e., 21 days. That is very very much longer than most anti-depressants, and the big meaning there is that, for the main reason prozac is prescribed, which is anti-DEPRESSION, you have some protection against suicidal impulses and acts. Note that this is a feature of treatment concern for DEPRESSION (Anxiety can exacerbate such feelings, but in support of, rather than mainly important for, its antidepressant effect, not quite so much as a treatment for anxiety itself, or for anxiety concomitant with depression). In other words, it is more for the anti-depressant effect and the periodic impulsive or driven (either one) of suicide. Unless your husband is significantly depressed, there are better options for chronic anxiety, unless the anxiety is fairly mild, because the SSRI action carries its own implications for effect on a person who is not particularly depressed. And anti-depression is more of a long term anticipation, and prozac is not particularly good for episodic or short term incidence of anxiety. (In fact, prozac takes almost a month just to kick in, never mind the months of subsequent titration.) Now, there are cases in which depressed mood or mainly anxiety can be mistaken for depression. Depression that is appropriately the target of anti-depressants is rather more of a long-term prospect...one doesn't appropriately use them except for anticipating a need lasting many months or years). So for anxiety, the use of prozac for anxiety is as an add-on treatment, not alone for it's anti-anxiety effect. You should not see prozac being used when a significant chronic separate condition of "Major Depression" is not present, except when chronic, significant use of an anxio-lytic has already become a long term problem. (And sometimes an anti-anxiety med is added in prescription to the prozac prescription.)

In other words, if your need is for anxiety without depression, or concomitant AGITATION, or BOTH, use an anti-anxiety medication (such as clonazepam, or for significant skeletal muscle relaxation, xanax (which is more prone to side effects than clonazepam so you use xanax with more caution) and manage that anxiolytic well for the episodic, or the ongoing, anxiety and/or agitation, rather than using an anti-depressant for the anxiety/agitation. (Also, as basically a stimulant, prozac is subject, after a year to five years, to what the psychiatrists euphemistically call "prozac poopout," where the med just stops working and all you get is side effects such as agitation and anxiety, due to the stimulant effect of the serotonin boost, which is something of interest to PWP who have great sensitivity to the dopamine boost from some PWP medications) and must find something else for the depression.) Again, the idea of prozac is for depression, mainly the longterm, significant ongoing depression, not so much for anxiety unless the anxiety is experienced as with, or part of, the depression. In other words, no depression, no prozac.

SO: to do prozac, it is best that the doctor has some longer term idea about what specifically the prozac is being prescribed for, especially if you are a stimulant-sensitive PWP who does not also have a separate, long term depression diagnosis needing treatment...because the otherwise main-effect of anti-depressant, stimulating property of serotonin inhibiting/slowing serotonin re-uptake can push a dopamine-sensitive PWP into side effect problems with their Parkinson's...which, if the clinician does not appreciate it, can lead to mistakenly adding on another separate treatment, with it's own set of added-on possible problems or conflicts with the SSRI...thus, fitting into that little medical school game I once spoke of used to train medical internes, the game called "bait and switch," i.e., symptoms added solely by the mistake of the physician, referred to in general as "iatrogenic" (literally, "caused by the doctor.") Better to carefully, but without overmuch of your own anxiety, incorporate the use of clonazepam for the present, longterm agitation and/or anxiety.

On supplements: If they work in your case, (and in mine for that matter) that is great. The trouble in general with supplements is they don't always for everyone, you have no assurance that what you are getting is what you are being told you are getting, there is no assurance that you don't also get adulterants or poor quality or poor consistency of ingredients from batch to batch, no data or other proof of effect, and no data or other proof about side effects and toxic ingredients...so you could be getting inert ingredients claimed to be really what the bottle says it is, you could be getting stuff that has unknown effects on you (so if they are bad, no way to tell what to do to counter the problem), or toxins that poison you, and no way to know what the poison is. So if the supplement "works," fine, as long as it does and you have no other problems...very hard to be confident about them in the same way you can about pharmaceuticals.

LAJ12345
LAJ12345 in reply to MarionP

Thanks so much Marion. I have long thought the Prozac started this whole chain of events. He was diagnosed as Chronically depressed but I really think it was actually anxiety not depression all along. The Prozac eventually made him suicidal hence the mirtazapine which at the strong dose of 30mg turned him into a 90 year old (he was 56) pretty quickly. At that point the Prozac was removed by psychiatrist. Then the Parkinson’s diagnosis. Mirtazapine Seemed to make him such a zombie that I very slowly over many months tapered it down and dementia type symptoms reversed. But then anxiety came back. So then sertraline was added by crisis psychiatrist which caused massive agitation and suicidal thoughts and 30 mg Added mirtazapine again. Over 2 years he has weaned off sertraline again and mirtazapine now at the tiny dose of less than a mg plus the hardys den seemed to keep him stable for many months until Covid and lockdown, winter, kids at home, tax returns, tenants moving out....

I always thought the clonazapam seemed to work best so now I feel happy to use it when required to take the edge off. I know 1/4 seems tiny but it does work. He has tried quite a few different supplements over the years so I don’t think he is that prone to the placebo effect as other herbals which supposedly could work for anxiety don’t.

I don’t think he actually had depression at all at the start and your explanation of how it works fits in with my experience of what happened. I think the doctors assume suicidal thoughts mean he is depressed but actually it is because he can’t stand being in his own skin and wants to escape from his body.

Today he woke up and said he doesn’t feel as bad! Not sure why. He hasn’t had any clonazapam for about a week. He has been back on mannitol for over a week now. Could it possibly be helping?? Running out of it did seem to coincide with the anxiety coming back but too many factors to say.

MarionP
MarionP in reply to LAJ12345

As you end by saying, "too many factors to say." ...For now.

LAJ,

How long has he been on B-1? If he had good results with it initially, but has been on it for months, it may be time for an extended break to see if it makes any difference. Dr. C always maintained that over time (many months), there may come a time when a minor dose reduction or mini break is needed. You could consider stopping his dose until any benefit he got from B-1 starts to go away. The problem that I have noticed is that once you stop HDT, it could take weeks for all of the original symptoms to return, but if symptom improvement is seen with a day or two of stopping B-1, then the current dose may be just a bit high.

Did you guys take good notes on how he reacted to HDT when he started on it? Those notes, if you have them, might be worth a review now.

Art

LAJ12345
LAJ12345 in reply to chartist

About 2 years. He started quite a few things and changed diet and started exercising so hard to tell what improvement was due to. When he started getting agitated recently I wondered if it might cause it so took him off for a week but he got incrementally more anxious. It seem like the kinson made him worse each time he tried it. So this week he has swapped to madopar which at least doesn’t make him nauseous but it’s is making him very agitated and he froze up trying to get into bed last night which he never had before. He only really started trying the Levodopa drugs properly a month or so ago and although they make him more motivated his physical condition seems much worse.

At the start when he took b1 his symptoms were mild and have been for a couple of years. Just the frozen face, sense of smell, hands that don’t work well, and walk. The Face improved and smell. The hands didn’t improve. He was taking mannitol too so either could have helped. He always gets anxious in winter so we try and get as much light as possible, and exercise every day. He takes hardys den which has all the other vitamins including d so I don’t think it is a nutritional deficiency.

He went up to 3 g b1 early on but was anxious then too so I gradually reduced it to 1500 then 1 g but when he is getting more anxious over winter the b1 at different doses doesn’t seem to make a difference. I was just worried the doctor would blame it if he had to go for his anxiety so I reduced it.

I don’t know whether I should try increasing it right back up to 3 g again or whether he is overdosed now. I’m not sure how to tell the difference. The psychiatrist he saw a couple of years ago when he was very anxious was very anti natural remedies. Last time he came right with the hardys and he had been good for such a long time. This time nothing seems to be helping.

See above response to hikoi about his genes test.

chartist
chartist in reply to LAJ12345

Since you aren't sure what if anything B-1 is doing for him, perhaps you should stop it completely for a bit and keep track of any changes you both notice. If he improves shortly after stopping B-1, that would suggest the dose is just a bit high, but If he worsens noticeably at some point after stopping B-1, then you have a clue that it might be helping. It is almost impossible to figure out what is doing what when you make more than one change at a time. It may be helpful to take B-1 completely out of the picture for awhile until you get his meds straightened away. Even if he worsens, he can always go back on it once his madopar dose is fine tuned and should be able to get any benefits from B-1, back again.

At two years plus of B-1, it is entirely possible that he could possibly need another dose decrease or mini-break from HDT. How much does he weigh?

Another consideration is that multiple forum members have mentioned that they have been able to cut back on their levodopa dose after starting on B-1 and madopar is a levodopa combo product.

Lastly, how does he do on the push test at his regular appointments with his neurologist/MDS. It wouldn't hurt to video a push test before stopping B-1. In fact a lengthy video of 10 minutes duration of him moving, talking walking etc before stopping B-1 wouldn't be a bad idea either. This can be useful in seeing what madopar adjustments can do for him or anything else he is testing.

Art

LAJ12345
LAJ12345 in reply to chartist

Yes, it’s tricky when changing many things but when he is so distressed I can’t leave him on a trial for a week at a time😫

I did stop the b1 to do this kind of test for a week and over that time the anxiety got steadily worse and symptoms didn’t get better. So I put him back on 1 g. I also stopped all supplements for a few days but he felt worse so he went back on them all.

When he first started b1 2 years ago the pull test was fine, he didn’t really step back at all so there wasn’t anything to improve on that front. His sudden worsening seems to be the levodopa drugs. Madopar doesn’t seem to come in a smaller size. The kinson made him too sick so he was only taking 1/2 one in the morning. He never noticed any effect from it.

His stiffness was becoming an issue as well,as the anxiety so we thought we should try the madopar and try and get it up to the recommended dose but they really make him agitated.

I do think it is probably his genetic mutations as he supposedly doesn’t break down seratonin or dopamine normally so I think he is easily overdosed.

He has high dopamine beta hydroxylase activity which his report says causes a BAD outcome. No kidding. Can you slow this activity?

Is this the beta that a beta blocker stops?

He weighs about 80kg

Hikoi
Hikoi in reply to LAJ12345

Well I fear for your husband if he is not following a neurologists direction. These drugs are powerful and complicated. i dont know all the side effects but I am surprised that levadopa causes anxiety, I find it calms and steadies me. Does your husband have a tremor? It sounds like he could be stiffness dominant and that often means freezing episodes. Taking meds regularly and on time would be important for your husband I would think.

“I do think it is probably his genetic mutations as he supposedly doesn’t break down seratonin or dopamine normally so I think he is easily overdosed.”

I have never heard of this. What references do you have?

As to slowing things down, we all wish for that!

LAJ12345
LAJ12345 in reply to Hikoi

We don’t get to see the neurologist much, he saw him once at the start, then a hospital nurse about 20 months later. I don’t know of any private specialist he can go to so have to wait our turn. He saw the Parkinson’s nurse last week who changed him to madopar.

You’re in NZ too aren’t you? How do you get to see a neurologist?

He had a genetic test done a few years ago when first diagnosed. It’s not a Parkinson’s test. It looks at gene mutations and looks at probabilities of developing certain problems given various forms of the genes. The above quote was from his report, it seems pretty accurate.

Hikoi
Hikoi in reply to LAJ12345

Yes in NZ. Ill private message you

chartist
chartist in reply to LAJ12345

The following abstract suggests that melatonin may be useful as an inhibitor of beta hydroxylase.

europepmc.org/article/med/3...

This study suggests similar activity by melatonin :

nature.com/articles/s41598-...

These are things that the 10 mg Melatonin/PD study did not include in their trial data, but could be one possible explanation why that study showed improved test scoring for depression and anxiety. On the other hand, it could have been because of the highly potent multiple antioxidant activities of melatonin or a combination of both therapeutic actions of melatonin.

In any case, it certainly gives further reason to expand on the 10 mg Melatonin/PD study in terms of dosing and duration as that was only a 12 week study which is quite short and the dose was low.

Art

pdpatient
pdpatient in reply to chartist

Hi Art. What is the push test? My doctor only administers the pull test.

chartist
chartist in reply to pdpatient

They are the same. When you consider what is being done in the test it is as if someone standing in front of you is "pushing" you backwards at the shoulders, but in order to keep a patient from falling, the doctor needs to also stand behind you to catch or slow you if needed, so from that point of view it could be called a "pull" test.

Art

pdpatient
pdpatient in reply to chartist

Thanks for the clarification, Art.

My husband became very anxious, studying something too hard was like a nail to the brain. The thing that helped most to calm him was lorazapam. He died in February. It seemed like the Parkinson's just continued to march on, no matter what we did, but melatonin to calm him if he sundowns and the lorazapam for general anxiety, helped the most.

LAJ12345
LAJ12345 in reply to rhyspeace12

Oh gosh, sorry to hear that. Mine was doing really well until lockdown and this crash is quite sudden. I would not have thought he was very far along at all, but now he is bad. Hoping it’s not something worse.

We do have clonazapam that was given to him 2 years ago when he had an anxiety crisis and became suicidal. He doesn’t like to take it but will have the odd 1/4 of a tablet occasionally if the anxiety becomes too much, but he has only had it a few times and hasn’t had any of that for a week or so now.

He has been taking melatonin 5 mg for a week now too so wondering if that is helping or making him worse.

rhyspeace12
rhyspeace12 in reply to LAJ12345

I doubt melatonin would make it worse. My husband was taking 10 to 20 mgs a day. He did die of what i found was a known complication of Parkinsons , Surprise Death in Parkinson's. I was so unexpected.

LAJ12345
LAJ12345 in reply to rhyspeace12

Oh that is scary. How old was he?

rhyspeace12
rhyspeace12 in reply to LAJ12345

He was 80 and miserable, but his body seemed fine. He went to a Super Bowl party and then died 2 days later. I had called hospice because i didn't want him to have to go into a home, and wanted advise. They were supposed to be out the afternoon of the morning he died. He was confused with mild dementia, but physicaly fine; i was shocked when he died.

LAJ12345
LAJ12345 in reply to rhyspeace12

Mmm I suppose if you are miserable you can will yourself to pass away? Hubby keeps saying he can’t see a way forward but I’m hoping once we get through winter he will come right again as the days get longer. It seems a pattern but I dread next winter as each year is worse. I just feel things are going well the middle of May comes and like clockwork he is down again.

rhyspeace12
rhyspeace12 in reply to LAJ12345

We tried so hard over the years. We always tried anything new that might help. We would often have a bit of hope, but, nothing stayed improved long, He felt bad most of the time, his cup was always half empty, if I'd felt like him, mine would be too. I don't like to be a "Debbie Downer" but, if you can accept that things continually go down hill and the end is inevitable, maybe you can enjoy those moments of peace and happiness you both have over tiny things, once in awhile. It will probably seem like he doesn't appreciate you, he is so into his misery that he can't see past it. But, once it is all over, after a few months, you remember the really good things about your marriage.

LAJ12345
LAJ12345 in reply to rhyspeace12

Yes. It is pretty tough for the kids to see at home. He is continually saying he appreciates me but says he can’t stand it and it isn’t enough, and apologises.

MarionP
MarionP in reply to LAJ12345

Some people respond poorly to melatonin. I happen to be one of them. So each individual experience can differ; especially considering he has a different set of mechanical processes due to what you mentioned was that set of genetic differences, it means that processing of any chemical is going to be individual to your case and the way you find out is purely clinically, i.e., try it in various ways and see what happens.

Forgive my intrusion, I am not replying with any advice regarding medication but having read through your message trail I would strongly suggest seeking an alternative Medical Consultant and have your husband re-assessed; neither you or he can be allowed to continue in this manner. I hope I haven’t offended you or anyone else on this valuable forum as that is not my intention. The complexity of the various medications need to be listed on a spreadsheet, perhaps with a timeline to include the positive/negative influences and handed to the independent Consultant after her/his evaluation of your husband.

I send my best wishes for your future.

Stop and start again. If your husband or you would like to speak to me, diagnosed May 2018, I am happy to do so.

Hi thanks, where are you located?

Hi, Warwickshire UK,

Hope your husband soon finds relief and improvement. I have WhatsApp if that helps......

Best wishes,

Mark.

It’s such a complicated condition to cope with my husbands had PD for 5 years plus. He started on Madopar low dose and gradually increased it to 4 x 100mgs per day and was fine for a long time added in B1 last year which seems to help. Not taken a break yet but takes 1gm in the morning and 1gm afternoon.

He doesn’t get much anxiety much but dyskinesia was troublesome added in Rasigiline 6 months ago but I think it took his body a long while to adjust to even a half dose. I think that is the problem, in my experience different drugs or any change in meds or supplements take time to adjust. Amantadine has been excellent for the dyskinesia and does really help. This still took some adjusting too.

I think the advice above to seek medical advice is vital it’s really hard to cope with it all on your own. All the best to you.

LAJ12345
LAJ12345 in reply to Zella23

Did the madopar make him agitated?

Zella23
Zella23 in reply to LAJ12345

No it never seemed to have any effect like that. Only dyskinesia after nearly five years. He also has half dose Madopar that he takes in addition if he feels he needs it or instead of a larger dose. the Neuro has said use it as you feel it helps, space out dosing as needed. He has a regular supply of both50 mgs and 100 mgs so he does play around with dosing. I am the researcher on supplements. He deals with his prescribed meds. He rarely takes more than 4 x100mgs per day. He has reduced dosage since Rasigiline added to usually 3 and a half Madopar per day. Hope this helps.

LAJ12345
LAJ12345 in reply to Zella23

Thanks yes it is good to know it can begin to work

Hello. I was, like him now I take Sinemet plus 25mg 100, 4 time, begin 9 morning, every 4 hours, more I take Xadago 100mg, morning 1 time only, and 1 am, I take, 1 Sinemet 25 - 100mg, retard, liberación retardata,, is when I go bed.. now I am OK, much better, my Dr. Spanish, she. say, this pills is my Gasoline, my petrol, I am a car, it works. So I am good now, she say must walk 1 hour a day, sorry my English not good, regards . Lale

LAJ12345
LAJ12345 in reply to Lale

Thanks Lale

Hi, I'm sorry I do not have any suggestions for you, but I do want to Thank You and acknowledge you for for being a loving wife and caregiver! Parkinson's is a terrible disease and it can put an enormous burden on any relationship. This stupid disease will steal your personality, change the way you think, cause hallucinations and fills you with anxiety and depression. Without the love and understanding of someone who cares anxiety may soon take over destroy any hope of making it one more day. He is a lucky, lucky man, your husband to have you in his life!

LAJ12345
LAJ12345 in reply to jupiterjane

Thanks. So glad rpto have this forum of helpful supportive friends❤️

I didn’t believe the Mannitol was doing anything for me besides helping with constipation and sense of smell. I ran out of it and went without for a week and a half. I was much stiffer with tremors and having significant anxiety over the sudden progression . I reordered mannitol and after another week , felt much better. I was very surprised . I guess it’s best not to change what is working. I have been taking Rytary for 9 months ( no nausea and much smoother transition for me than c/l er), Amantadine and Azilect for several years. I am lucky to have access to a movement disorder neurologist that I see regularly; it really helps to bounce things off someone who has a good understanding of the disease.

LAJ12345
LAJ12345 in reply to DianeF

Oh well maybe it was helping then. I had ordered more well in advance but 2 months later it hadn’t showed. I thought it was lockdown in the US and the mail service delaying it but when I contacted the supplier he found it went missing in Miami airport! He sent another lot free of charge, then what do you know, it turned up about a week later! The address had been written incorrectly on the parcel by hand ! It must have been in Christchurch all the time and it took them over a month to figure out where to deliver it! Anyway he has had a bit over a week back on it so if it was working hopefully it will kick in again soon.

I have learned over the years with Parkinson’s medications on top of each other cause more havoc than good. For me less is more. All you’re doing is confusing the neurotransmitters even more.

I had to find my own way willing to put up with a few side effects. Rather than take a lot of different medications. I’m not talking about supplements but prescription meds. If I told my doctor I had trouble sleeping he’d give me a medication for it. If I told him I was feeling depressed he give me a medication for it. And so on and so on. It’s very confusing to the body completely out of its natural state even more.

LAJ12345
LAJ12345 in reply to nsofka

Yes that’s what I think too so that is why he hadn’t been on any PD meds until recently. Im pretty sure got in this state because of the doxycycline he was on for years for rosacea, a antifungal drug for toe infection, then antidepressants. Plus less than perfect diet. I always tried to have healthy meals but he was a shocker for raiding the cupboards for cheese, pies at the dairy, chocolate bars at the petrol station etc! And lots of bread snacks.

If I had only known then what I know now I would never have allowed the antidepressants etc. but would have changed the diet etc and tried natural medicine for the rosacea, which has worked ! (Berberine and allimed garlic alternating with probiotics for anyone who is interested).

But now he is so stiff and lacking power we thought we should try the levodopa as the worry about his condition is making the anxiety worse so it is a downward spiral.

Is it possible there is another health issue apart from Parkinson's? If I have a tummy bug or cold the Parkinson's gets worse and my response to medications lessens. I live in Auckland by the way where in NZ are you?

LAJ12345
LAJ12345 in reply to buckens

In Christchurch, city of disasters!🤣

He for years would complain about being exhausted and feeling fluey so I am sure he had an underlying infection that was causing the rosacea and fungal nail. The rosacea is under control now so hopefully the infection has been reduced through diet and herbals. I don’t think he has a cold or tummy bug. It’s more the stress of lockdown and winter I think, plus we had tax return to do, tenants moving out so he just can’t cope with anything at the moment. Even though I do it all. As soon as he is starting to feel a little better he starts worrying about everyone else’s things. Eg my son got a speeding ticket and also was due for a warrant of fitness and hubby has been worrying Himself sick he won’t pay it on time or get the WOF in time weeks before either is due. The boy is nearly 18! I say if he doesn’t get it done on time he will suffer the consequences and learn a lesson but hubby won’t leave it! He also worries when they are late for school, don’t do dishes to his specifications. Leave an item on the bench..... anything and everything really. Quite OCD when he is starting to feel a little better.

buckens
buckens in reply to LAJ12345

Reading your entries it sounds as though you have used a few supplements and herbs...have you tried Pau d'arco for fungal infections amongst other things, my family has used it for years, we get the tincture, Also Clinicians make a supplement called Del Immune V which I have taken in combination with Pau and it has helped me a lot. I use these when I feel that I am struggling & feeling tired, nervy and irritable. I can send you links but it sounds as though you are good at doing your own research.

LAJ12345
LAJ12345 in reply to buckens

Yes please. I would like the link. I have seen some research on Pau d’arco which I seem to remember has some side effects?

Cleo16
Cleo16 in reply to buckens

Same happens to me buckens. I'm in Wellington NZ by the way. LAJ lm so sorry to hear this but wonderabout whether the mix of meds and supplements you are giving your husband may be reacting to each other. By the way sinemet is now available in NZ again. Take care both of you and I really hope things improve very soon.

LAJ12345
LAJ12345 in reply to Cleo16

Ah really. That's interesting. He wasn't offered sinemet. He had that at first two years ago but they switched it to kinson without telling him. He didn't ever use much of the sinemet as he didn't really need it at the time.

The supplements he was on had been the same for quite a few months and he was doing really well before lockdown so I don't think they were the problem. It seemed to be adding the kinson that started the problem. Or it might have been the lockdown and winter. Or running out of mannitol.

Meditation by Joe dispenza helps also staying away from the news watching things that make you laugh make you feel good and then I noticed when I'm low on dopamine my emotions are really affected

LAJ12345
LAJ12345 in reply to akgirlsrock

Yes he has been quite emotional lately. He is crying at weird things. Hoping he doesn’t have something worse than PD🥺

He will not do meditation, yoga, qigong or anything he considers airy fairy type practices!

bepo
bepo in reply to LAJ12345

Did all this start when he began taking pharmaceuticals? Maybe cut back to what you were doing before.

LAJ12345
LAJ12345 in reply to bepo

Yes the levodop drugs kinson now madopar seem to be making him anxious, but he was getting so stiff And powerless he thought He should try them

akgirlsrock
akgirlsrock in reply to LAJ12345

Have him listen to dr joe dispenzas, they have scientific proof, he's inspiring and testimonials from people with Parkinson's on YouTube.

LAJ12345
LAJ12345 in reply to akgirlsrock

Ok will do

Oh, by the way, before responding, I wrote the above in stages over a few minutes, so please hang on for this final bit above. Sorry about that.

Also, you should know, I do not respond to private messages, because in those communications there are no "witnesses" like there are in a group forum like this one. The best I can do in an intentionally anonymous forum like this one is to have you look at the few words in my bio and see whether you believe them or not.

LAJ12345
LAJ12345 in reply to MarionP

Ok fair enough.

After begin in madapor for a year we have found out the sinemet ( not kinson) is back in stock so have changed back. It is so much better. On madapor the dose runs out very abruptly and it just didn't seem that good.I think they made him anxious. he had so many falls on it. Also constipation can make things much worse and if hes not sleeping so good since lock down that will make him worse. If sleeping has been an issue try a nap during the day. Hope this helps. all the best to you.

LAJ12345
LAJ12345 in reply to 20fatcats

Interesting. Where are you located? I’m not sure if sinemet is still on the list available in NZ. He has noticed that the madopar does seem to suddenly stop working to the point he can’t move, whereas before he took any of these a month ago he had not ever had that problem before. Scary stuff.

Thanks

I have been B1 at 4g daily for years. Successful until recently when I started messing with dose. I went low then went higher. At 6 g day I noticed improvement. I’m still in discovery so this is not a recommendation.

LAJ12345
LAJ12345 in reply to RoyProp

Do you have bad anxiety ?

RoyProp
RoyProp in reply to LAJ12345

I suppose. Yes I have worries.

LAJ12345
LAJ12345 in reply to RoyProp

Does the higher dose make the anxiety worse or is it calming or make no difference? He seems stuck in the endless loop of wanting it to be over and feeling like a burden and making negative comments about himself.

No difference

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