I'm coining a new term - bipolar Parkinsonism! Symptoms are extreme one day and practically non existent the next. I have no idea what triggers this either way.
Monday my symptoms were off the charts, highest anxiety, shaky as can be, noticeable bradykinesia. Worked hard 10 hours. Fasted all day till dinner.
Tuesday started off with symptoms still bad but got better as the evening approached. Had the day off work and i didn't fast.
By Wednesday almost completely asymptomatic all day and all night. I fasted all day, worked hard for 10 hours then got called back to work at 2:30 am till 4am. No changes in diet, meds, supplements or routine.
There was actually one thing. At 5 pm Monday evening i took one clonazepam pill my dr prescribed to be taken as needed for anxiety , just to try. I never took it before. I didn't really feel any effects from it but i did go to bed early. Still I was very anxious 4 hours after taking it . I doubt that was what made me swing from Parkinsonism to fine 2 days later. This happens all the time.
Any thoughts?
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bassofspades
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Oh boy, you read my mind today! I’m having an awful day. Totally rigid and shaky inside. Meds don’t seem to be working at all.
Some days I feel great and I don’t know why either. I always worry on days like today that I’m going downhill fast, but then I usually feel better the next day... hoping tomorrow will be better. Also, I’m much worse the first half of the day too and can’t figure that out either.
Started c/l. 2 months ago. Brought benefits for sure. Morning are great few if any tremors usually. Afternoons an eve none even without protein. Mos V nights get up at 2 with or without out Clonzapam, pot and melatonin and mag. Wish I could figure it out. Mds advised going to 1 1/2 3 times a day Which works great but trying to keep down to 1 pill every 5 hours. Good sleep could have tremors bad sleep cud have few or none. Very weirdd
You will need to check for your cortisol level. It might also be blood sugar fluctuations because of fasting and that can cause anxiety.
I would break my fasting for a week and go for low carb diet eating 3 times a day. No gluten, no diary, no sugar, no coffee , no soda, no alcohol, not even a beer and check after a week.
NO Coconut Oil. It causes severe anexity. Normal caffeinated tea instead of coffee.
I appreciate the suggestions, but this has been going on for 8 years. Longer than I have been fasting, and i cut out gluten and dairy since a month ago. I don't eat or drink anything on that list except coffee and coconut oil, and dark chocolate especially dk chocolate m and ms.
And then there was that one lady that said she fed her demented husband gobs of coconut oil and cured her husband's Alzheimer's. Later to be exposed as bs
Interesting. The one person who reported dosage was taking 100 g per day. That is quite a lot. I only use coconut oil in place of butter, probably less than 1/10 the above dose daily. No doubt dosage makes a big difference.
i think youre on to something regarding cortisol! Heres my story,,, My symptoms first began shortly after I had kids. They were bad night sleepers and they kept me from getting proper sleep for many hours every night. Plus, as my job requires me to take on call at night, that interrupts my sleep terribly as well. Thirdly, my wife says I snore like a freight train, so I sought advice from a pulmonologist, recently. A sleep study revealed that I have severe sleep apnea, my breathing stops a scary amount during the night. I am in the process of arranging for an auto-pap n stuff, but there ya go. Theres all the cortisol. The floodgates have been open for 14 years, long enough to develop my problem. Check this out - in my original post, I said I went to bed early monday night and started to get better tuesday. Maybe a good nights rest is the answer. Thank you for helping me think this through Kia, my very good friend! Youre always there for me and I really appreciate you. I will stop coconut oil at once to see what happens, too. Is there a home cortisol test, like a urine dipstick, that I can check throughout the day? IS that a thing?
Ah, you are wise, my dear friend !sleep apnea is the silent killer. Well maybe not silent with the freight train snoring! But it's a great contributor to coronary artery disease. As a Cath Lab technologist i can attest. This is the reason married people live longer, it does not just seen longer, loll!!
Bass, I did one of these just over 10 years ago. It involved dribbling saliva into a test tube four times during a day, immediately freezing each sample, then posting the set to the lab the next day by guaranteed next day delivery. The results were enlightening.
Bass, check out if you experience Adrenal Fatigue. My husband had the test, and his cortisol was off the charts. Doc prescribed hormonal therapy in a liquid form which he applies on his wrists daily. He hasn't experienced anxiety since he started it.
It has no cbd or thc so it legal without prescription here. It seems to be working for hubby at 4 drops per day sublingually and it has replaced the clonazapam successfully.
He was taking 1/4 clonazapam when he was getting extremely anxious then another 1/4 half hour later if he needed it. Up to half a day. He doesn’t need much to help. Try dropping the dose and take enough to provide 90% relief as it can be addictive and you will need to increase it Over time if you take more than you need.
I would drop the m&ms and limit chocolate to 1 square 90% per day as it has caffeine.
Well it is worth a try. They might have nasty additives and sugar for sure.
But I think hubby’s bad anxiety was either caused by starting the Kinson then madopar or winter approaching.
At work are you under lcd or fluoro lighting all day?
I think he is highly affected by light. So try and get some real daylight into your eyes early in the morning , no sun glasses or tinted lenses and as often as you can during the day if you can look out a window to real light. And use blu light filters on screens where you can at night.
Can you get yourself a bright lamp with a broader spectrum lightbulb eg a sun lamp and have it where you work and try and mimic outside daylight conditions?
This book I haven’t read but it is by ari Whitten and I listen to his podcasts and he seems very genuine . Looks like it’s quite cheap on kindle so maybe worth a read.
Well I was sceptical of the hemp oil without the cbd but it really seems to be helping even at the low dose so will keep you posted. It’s expensive but worth it if it helps because if you are missing work that can be expensive too.
It’s 0.5 but he takes 1/4 of one. It’s not a regular dose, just if he needs it. He has been able to avoid it for the last 5 days by taking the hemp oil which is amazing as he was needing the clonazapam every day recently.
Normally, cortisol levels rise during the early morning hours and are highest about 7 a.m. They drop very low in the evening and during the early phase of sleep. But if you sleep during the day and are up at night, this pattern may be reversed. If you do not have this daily change (diurnal rhythm) in cortisol levels, you may have overactive adrenal glands
I remove the coconut oil for a week and see.
A cortisol test measures the level of cortisol in your blood, urine, or saliva. Blood tests are the most common way of measuring cortisol.
Inappropriate cortisol levels, either high or low, may lead to sleep disturbances.
Have you suddenly lost a lot of weight? Hubby has. I am wondering if fat cells as they burn off fat release toxins eg mercury or pesticides etc into the bloodstream which might cause anxiety. Try taking extra fat calories eg organic olive oil so you don’t lose weight too quickly with the fasting. Not sure if this is valid or not but this is the second time his rapid weight loss has coincided with returned anxiety.
But it’s chicken and egg stuff. The anxiety might be making him lose weight with the extra tremor.
For most people with bipolar depression the swings are not dramatic as described. There is an approximately two week period of building mania which culminates in a mania related emergency. This is followed by a two week or more period of biological depression if not treated by anti-depressive medications. For some manic depressives who are not properly medicated this cycle can repeat monthly or every two months. Since the periods of mania and depression are not slowly building or systematic for Parkinsons I think this name is not evocative of what you want to describe.
Random daily responsive Parkinsons may be a name that works.
It might be a sign that the amount of medication you are on is inadequate (could it get exhausted somehow). I know for my medication they have only last in the body for 8 hours (pramipexole and rasagiline) and 5 hours(rytary).
If increasing medicine did not work I would consider whether the intermittent fasting is messing with the way your body processes the drugs. Pramipexole works better if taken with food. Protein interferes with rytary. Best wishes you you and hope to see you in the Pub!
As someone with a clinical diagnosis of bipolar disorder (Bipolar II) I really appreciate your comment, pmmargo. The unpredictable cycling of PD symptoms is utterly real, and the term "Bipolar Parkinson's" is tempting because it conveys the idea of extremes, but being bipolar is a separate condition with its own challenges and treatment concerns. For those of us who have to navigate both, it's helpful to keep terms clear!
I hate clonazepam. I was perscribed it for the REM sleep disorder. It never worked and the neurologist gave me higher and higher doses. It is horribly dangerous...you can get seizures if you stop it suddenly. All the benzos are dangerous.
I also took xanax for a while for IBS years ago and it worked really well(only thing that actually worked). When my Dr. found out about it she was horrified since it is addictive. (I've actually asked for xanax and was not given it by neurologists at Georgetown--they are also concerned about addiction).
I'm not going to take it unless im a basket case. I never get addicted to anything anyway, my dopamine system can't provide for it . I only smoke on Tuesday, for example. One or 2 cigs a week.
I have no dignity I asked the Doctor and two of the residents. They did offer the stuff which takes two weeks to work (not that well). Times have changed. Fortunately the Lithium Orotate seems to be doing something positive and appears to be not dangerous.
Oh gosh that’s funny. I’m the same way. I troll around for it too. They used to hand it out so readily. And of course it is strong and addictive stuff, but all the sudden after years of easily getting Xanax, things tightened up. And if you have really bad anxiety, Xanax is fast acting and incredibly helpful, but then again it is addictive. I have to look up the lithium. It sounds promising and I’m glad it’s working for you.
Ha! It certainly is good for that kind of situation and zonking out feelings. Same thing for using it for going to the dentist. You just sort of don’t care…
I didn’t read your post very well I’m sorry. OK so you’re saying Xanax doesn’t work that well or takes too long. I found it to be immediate but everybody’s different. And actually since it’s not easy to get I guess the point is moot. Hey, if the lithium is working for you and works for me too, we need no longer hunt for Xanax!😀
No worries! I probably just misread. It’s a shame that the heavy duty pharmaceuticals work so much more quickly and better than herbal remedies, darn it. At least that’s been my experience.
If you are one of those people who are very sensitive to blood sugar levels, I have never been a fan of periodic starving, but my attitude is not from a place of being knowledeable about it.
Second you, on IM, Bass. As a diabetic, it has been instrumental in controlling my A1c.
As for the bipolar thing, I go through the same stuff every week and for the past 6 yrs since confirmed and seconded diagnosis. My MDS told me it's a common theme in patients who are not taking medication strictly as prescribed. LoL. He knows that I go about changing my mind about how much to take every other day😇😊. But, then again, don't we all? His entire support group of doctors had a fit when they learned that I was supplementing with Mucuna. I still have to have my wife vouch for the fact that I don't anymore.
The way I think about it, symptoms vary from day to day and hour to hour or even just for a few minutes depending on the mood. I find that even a vague sense of oncoming anxiety triggers tremors. Meditation works and I am reading Joe Dispenza! His method works too😊🤙
I think that the key is anxiety. I feel fine as long as I am at peace. Or distracted😅
Marion and bassofspades, my answer to "why not" Bipolar Parkinsonism is that someone with a clinical diagnosis of bipolar disorder is managing a separate condition that has its own challenges and treatment concerns. NOT to minimize the distressing cycling of PD symptoms, but as someone who deals daily with being bipolar and having PD, I would like to ask folks for more specificity and awareness in the use of the term bipolar.
sorry, I dont mean to cause anyone stress! When I refer to what I call Bipolar Parkinsonism, I will always include the word Parkinsonism to distinguish that I am not talking about Bipolar Manic Depression. Good luck to you my friend!
I do appreciate that, but I would still say it's confusing for those of us who deal with both conditions, clinically speaking. I came here wondering if this might be a thread for bipolar folks who also have PD.
The modern term for "Manic Depression" is "Bipolar Disorder." "Bipolar Disorder" is a helpful umbrella term because it includes both Bipolar I and Bipolar II. Folks with a diagnosis of Bipolar II, like me, don't have mania; we deal with depression and sometimes hypomania. This is a world of study unto itself and, I feel, in a health forum, it's best not mixed with other conditions in colloquial ways.
Thank you for listening and I wish you the best as well, whatever you decide to call things!
I was joking with bass, as was Bass. Don't be so literal. Tell me all about diagnostic construction, I was part of the field validation trials in DSM-III and IV. Believe me, you can't just "coin" a new diagnosis on a private patients' blog.
As writer Douglas Adams once said, "You've got to have a sense of proportion" his wife used to say to him (28 times a day)."
I wouldn't have thought Bass was proposing a new diagnostic term; in my mind he was riffing on the phrase and enjoying it, which I can absolutely appreciate. Also, of anyone I've come across on this forum, I knew that you would know that Bipolar Disorder is a diagnosis unto itself, which is why your "why not" surprised me. Now I better hear that you were joking.
Lots of people have no idea what Bipolar Disorder is really about. Because I grapple with the weird crossing points of that and PD, it felt important to say something about it. Now that I've done so -- several more times than I intended to -- I'm happy to drop it so we can all go on to something else!
Hi basso! I’m telling you, I’m glad somebody else has extremes, like I do! That’s a good term for it-Bipolar Parkinsonism! A good example of this, is a few months ago, one day, I was having a heck of a time walking. My legs felt stiff, and heavy, and I had to lift my left leg up, with my arms, in order to get in the car. A couple steps up were a challenge, later in the day! This was a painful day, where my feet seemed to want to stick to the ground, and not move. That day, I took Sinemet, as prescribed, and yet, I still had those problems. I thought to myself, I have a neurologist’s appointment the next day, and I’ll talk to him about it. Well, the next day came, I took my medicine, at the usual morning time, and got ready to go to my Doctor’s appointment. I was feeling particularly good that morning. I was walking ok, with little stiffness and pain. So, at my Doctor’s appointment, my symptoms were minimal, and I didn’t have resting tremor, obviously, or stiff, heavy, hurting legs. My balance was ok, that day! So, when I walked up the hall, at the Doctor’s office, I seemed to walk much like any other normal person! So, when I asked the Doctor about some days I’m ok, and other days, my symptoms can flare up, to the point where I am obviously having problems! The Doctor said that I looked like I was doing fairly good, overall, and that I seemed to be fairly stable. When I told him how well, Sinemet seems to work for me, he agreed that it was a good thing that Carbo/Levodopa can help Parkinson’s patients, so much. I left the office, still not understanding the concept of what you call Bipolar Parkinsonism, bass of spades!
Bass, working shift schedule, in a highly stressful environment, is not the ideal combination for PwP. Do you think if you ask your boss to quit your shift schedule and work only during the day would he/she approve it?
A good night's sleep is essential for the brain to rewire. If my husband doesn't have a good night's sleep, his symptoms are very intense the next morning.
I work 4 ten hour days a week, 645am to 5pm, half hour break, then im on call 3 to 5 nights a month and every 5th weekend. The amount of on call varies and the times I get called in varies as well. There's no other shifts except 3 12s instead of my 4 10s.
I'm looking at L Theanine right now . Meanwhile, i have been feeling better the last few days. I didn't put coconut oil in my coffee today and haven't taken my vitamin c last 3 days. Just as an experiment
a small dose of b3 NA (no NR or other form) made a difference in my sleep, even taken occasionally. There is a lot of documentation on the web. IMO Resolve the shortage and all neurotransmitters will settle down properly.
"There was actually one thing. At 5 pm Monday evening i took one clonazepam pill"
Do a quick Google search on "Paradoxical reactions clonazepam"
My experience with just a few doses of Clonazepam was bad. My MDS prescribed it for REM sleep disorder and for physical agitation caused by C/L.
I ended up crying many times a day, feeling depressed, ruminating all day on issues that hadn't bothered me in years... All of these stopped as soon as I stopped clonazepam.
Thanks for the advice. I only took it twice and I don't have any plans to take it again. I did just order some L-theanine to try instead. Both work on the GABA system
There are studies showing similarities in symptoms of ADHD, Bipolar Disorder , Nicotine dependence , parkinsonism and another aspects of personality disorders due to lack of DA transporters and some people due to Genetic causes which is mutations in Tyrosine hydroxylase Enzyme Gene and that is a autosomal recessive triat meaning patient should have received a mutant allele from each parents to present parkinsonism.
I’m so sorry you’re going through this, Bass I don’t have anything to contribute other than sympathy and did notice your schedule is very hectic, but I know there’s nothing to be done about that. For anxiety, my doctor recommended L-theanine, which you said you were going to try, passion flower, and I think ashawaganda was another one. I’m pretty sure she mentioned that one. She also talked about kava and I think there might have been some kind of conflict with levodopa. I know if I Take Xanax, levodopa doesn’t seem to work as well. I don’t know if it’s the case is the same for clonazepam, but I really do think the benzos affect dopamine adversely. But you’re not gonna take it anymore anyway.I also have some weird off days too. Last week I was basically smashed on the couch for a day and didn’t really feel much better the next day, and now I’m fine. For now LOL.
Thank you my dear friend. I got a bottle of l theanine just today and so far I like it. Going to take 200mg 2x a day with my coffee because everyone who had anything to say about it said it really goes well with caffeine. I read up on it and the story looks like just what the doctor, me, ordered.
That’s great!! I’m not sure I was taking enough; I have to try it again. That’s great though, I’m glad it’s gonna work for you. Let us know how it goes but it’s looking good!
Following up . I think I have found a very safe and very effective solution for the malignant anxiety problem I have been suffering from for about 8years!
First I tried Kia's suggestion of dropping my daily scoop of coconut oil. Not much better . Then I increased my lithium orotate by 5mg per day. A little better but still symptomatic enough to have much room for improvement. Then I came across this...
L-Theanine
L-theanine is a plant derived amino acid , found in tea leaves. It promotes relaxation by inhibiting glutamate receptors. Glutamate is a highly exitatory neurotransmitter. I-theanine reduces sympathetic nervous system activation and the stress response, increases GABA, dopamine and serotonin. I have been taking 200mg L-theanine with a cup of coffee twice per day since Sunday and I have noticed, and people close to me have noticed, THE HUGEST RELIEF IN ALL SYMPTOMS BOTH MENTAL AND PHYSICAL IN MY 8 YEARS SINCE DIAGNOSIS! Generally regarded as safe, the recommended dose is 200mg 2 to 3 times a day not to exceed 1200mg a day.
One more related anecdote. Wednesday, I was scheduled to work with the most demanding perfectionist surgeon who usually ramps up my anxiety and tremors to the highest level . 10 minutes before the case i asked him what special supplies to have on hand. So he starts rattling off a huge list of catheters, wires,angioplasty balloons, stents, and more, all with specific sizes and idiosyncrasies. After about the 25th thing he says aren't you going to write this down? And for some reason I felt no need to , everything was crystal clear. He says, oh are you one of those people with the photographic memories? I said well not usually but I feel like I'm in the zone today! Well the case went really well, i had everything he asked for and everyone in the OR was commenting on how CHILL I am! Such a change from being a brain foggy anxious shaky mess!
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