My HWP, diagnosed 30 years ago, DBS 18 years ago, has been going through a very difficult period with his PD for the past 3 months. His knees keep collapsing and his 'offs' have become very bad. I am having to lift him from his falls and helping him get out of his chair, bed etc. This has been a real strain for me, especially as I have a bad back. I think anxiety is a large part to do with my husband's demise so after several phone calls his neurologist is prescribing him Sertraline. To me, I think he has done well to go 30 years without any anti anxiety medication. Can he he go on the B1 protocol whilst taking these?
A year ago he started on 500 mg oral B1 and overdosed after 8 days. After two weeks he started on sublingual 100mg MWF as recommended and overdosed on that. After another break tried halving this to 50mg but he felt overdose symptoms again so stopped. He wouldn't try the Therapy again saying it was too complicated. After a couple of months I talked him into trying 100mg oral and upped this to 200mg after 3 weeks. Then his knees started collapsing and his PD went worse overnight so he gave up everything other than his PD meds. Two months have passed and not really much improvement so he has agreed to try B1 again starting on a very low dose.
I have been reading all the posts on the Facebook B1 Therapy site and since I joined a year ago many more members have joined and opinions seem to have changed a lot. I have read that some people taking the favourite sublingual are experiencing anxiety on it. One Portuguese guy is running his own trial and people in his group are having success with as little as 50mg oral a day. What has been realised is that it is better to start off small and as soon as you get any simple improvement stay on that dose.
So bearing this in mind I have started giving my husband 25mg sublingual Mon and Thursday for now and will bring in magnesium and b complex in a couple of weeks. What do you all think, my friends? I have posted on HU because you are such a knowledgeable bunch. Do you think sublingual or oral ? Only yesterday I read about sublingual causing anxiety. Should he do the therapy whilst taking Sertraline or wait to see what results he gets from the B1? I am pretty desperate as you can imagine to see some improvement in him but I don't know which route to take. It is really having an effect on my mental state and I know that PD doesn't get worse overnight without there being an underlying problem.
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First, let me express my empathy and understanding of the challenges you are facing. Since you have been reading up the various posts on Facebook and here, I appreciate that you are searching for answers from the community. I will let them chime in.
I would like to offer you the answers provided by artificial intelligence, perhaps you can use the responses if you want to your level of comfort.
So my subsequent comments are the response from the artificial intelligence chatbot called Claude. Please read with caution.
Also, you have a typo in your question - demise versus deterioration.
The post asks about taking B1 therapy alongside anti-anxiety medication for Parkinson's disease.
The key points are:
- The person's husband was diagnosed with Parkinson's 30 years ago. His condition has deteriorated severely in the past 3 months, with frequent falls and worsening motor fluctuations. This has placed a strain on the caregiver.
- The neurologist has prescribed the anti-anxiety drug Sertraline to address what is felt to be increasing anxiety contributing to his condition.
- The husband tried B1 therapy in the past but had overdose symptoms on higher doses. He is now willing to try it again at a low starting dose.
- The question is whether he can do B1 therapy while taking Sertraline, or if he should wait until seeing the effects of B1 alone first.
- There is a typo where "demise" is used instead of "deterioration" to describe his condition worsening.
Potential solutions offered are:
- Starting a very low B1 dose such as 25mg sublingual a few times a week to avoid intolerance issues
- Monitoring closely for any negative interactions if taking the B1 and Sertraline together initially
- Considering a short trial of B1 alone before adding the Sertraline to better assess each treatment's individual effects
- Consulting with the neurologist to get medical guidance on the safest way to approach combination therapy
Here are some additional details and suggestions regarding the post:
- The caregiver seems understandably stressed by the husband's severe deterioration. Ensuring her own mental well-being is also important during this difficult time.
- Past issues with overdosing on higher B1 doses suggest starting extremely low is wisest approach. 25mg sublingual a few times a week, as she plans, is a conservative starting regime.
- Giving the initial low B1 dose time, such as 4-6 weeks, to see if any positive response occurs before potentially increasing or adding other supplements/medications. This allows for gradual titration.
- Consulting online Parkinson's support groups in addition to the neurologist could provide anecdotal insights from others combining these treatments safely.
- Considering non-medication approaches too like exercise/physio if possible, to support B1 therapy and help husband's condition overall. Reduced activity likely worsens symptoms.
- Open communication between caregiver and neurologist will be key. Providing all treatment details and closely monitoring for any side effects or lack of tolerability if regimes are combined/modified.
- Continuing regular follow ups with the medical team generally to re-assess treatment approach as husband's condition may fluctuate or new issues could arise over time.
- Seeking additional home care/respite if needed to help lessen burden on the caregiver long-term for both their well beings.
XHere are some additional points that could be made in response to the post:
- Starting the B1 therapy at an extremely low dose, as suggested, helps minimize risks of overdose side effects. However, it may take several weeks at that dose to see any potential benefits. Patience will be important.
- Carefully monitoring symptoms, function, mood, and any adverse reactions would help ascertain if the starting B1 dose is appropriate or needs adjusting up/down. Keeping a detailed journal could aid that process.
- If symptoms seem improved after a month on the low B1 dose alone, that may provide useful baseline information before considering adding the Sertraline. Adding medications one at a time allows better understanding of individual impacts.
- However, starting both together at low doses under medical guidance could also be reasonable, given the priority of addressing anxiety symptoms exacerbating motor issues. Close supervision would be very important in this scenario.
- While beginning cautiously is wise, it's also important not to delay interventions too long if the husband's condition continues declining rapidly. The caregiver will need support from their medical team to balance these risks appropriately.
- Additional lifestyle modifications like exercise tailored to abilities, stress reduction, social engagement, and diet changes may help complement pharmacological treatments by helping general wellbeing and management of Parkinson's and anxiety symptoms.
- Investigating speech, physical, or occupational therapy options could also help the husband maintain function and independence longer term in combination with medical management.
- Ensuring adequate support services and respite care for the caregiver is equally important for sustainable long-term care of the person with Parkinson's disease. The caregiver's health must also be prioritized.
Some common potential adverse reactions to high-dose B1 (thiamine) therapy include:
- Nausea/vomiting - This is one of the most frequently reported side effects, especially at higher doses. It's usually mild and transient.
- Dizziness - Feelings of lightheadedness, unsteadiness or faintness can occasionally occur, particularly when standing up.
- Fatigue/sleepiness - Some people report increased tiredness or sleepiness with B1 supplementation, especially at higher amounts.
- Headaches - Transient headaches are not uncommon, but should subside over time as the body adjusts to increased B1 levels.
- Irritability/anxiety - A small number of individuals note more irritable or anxious mood changes with B1 therapy. This usually lessens at a lower dose.
- Tingling/numbness - In rare cases, some tingling or temporary numbness in the extremities has been reported. It's typically mild and fleeting.
- Upset stomach - Stomach upset beyond nausea, such as diarrhea, abdominal pain or discomfort, can potentially arise but is infrequent.
- Allergic reaction - True allergic reactions to thiamine appear to be quite rare. Rash, itching or swelling may potentially occur in hypersensitive individuals.
Keeping B1 doses conservative when starting or increasing minimizes potential for side effects, which usually disappear once the body adjusts to higher B1 levels. Consulting a healthcare provider is also important.
Here are some additional potential benefits of high-dose B1 (thiamine) therapy according to research studies and user reports:
- Improved energy levels and fatigue reduction. B1 plays a key role in energy production.
- Enhanced focus and clarity of thought. Greater intracellular B1 helps brain and neurological function.
- Better mood stabilization and reduction of depression/anxiety symptoms. B1 supports neurotransmission and mental well-being.
- Reduction in Parkinson's disease motor symptoms like tremor, rigidity, and gait/balance issues. B1 impacts neurotransmitters involved in motor control.
- Improved sleeping patterns and reduced restless leg syndrome. B1 helps regulate brain chemicals involved in sleep.
- Pain relief for conditions like fibromyalgia. High-dose B1 therapy modulates pain signaling pathways.
- Reduced stress and improved resilience to daily pressures/stressors. B1 is protective against cellular damage from long-term stress.
- Skin complexion improvements as B1 assists collagen production. Some users report softer, less dry/wrinkled skin.
- Mitigation of symptoms for other neurological conditions like POTS and neuropathy. B1 repairs cellular damage from issues like vitamin deficiencies.
Of course, benefits are individual, but high-dose B1 therapy shows promise based on preliminary research and anecdotal user reports. More formal clinical trials are still needed.
Here are some additional details regarding potential benefits of high-dose B1 (thiamine) therapy:
- Cognitive benefits - Many users report improved concentration, memory, and mental sharpness on B1. It supports brain cell function and energy metabolism.
- Cardiovascular protection - B1 plays a role in heart health. Reducing inflammation and oxidative stress may help lower blood pressure and protect against heart disease over time.
- Neuropathy relief - For those with neuropathic pain issues, high B1 supplementation can reduce painful sensations by improving cellular metabolism in nerves.
- Diabetes management support - B1 assists with carbohydrate and fat breakdown, supporting healthy blood sugar and diabetic complications like nerve damage.
- Cancer prevention - Preliminary research links optimizing B1 status to lower risk of certain cancers. It bolsters cellular antioxidant defenses against DNA damage.
- Sight improvements - Some anecdotal reports mention declining cataracts and sharper vision on B1 therapy. It contributes to eye health by protecting tissues from oxidative stress.
- Migraine alleviation - B1 involvement in neurotransmitter and energy pathways means it shows promise for lessening migraine frequency and intensity.
AI is not a valid research tool and should not be used as such. If you want to post this sort of nonsense under your own name that is bad enough, but to litter all this stuff under somebody else's post is not okay. Please delete the copious logorrhea you have posted.
"Can you melt eggs? Quora’s AI says “yes,” and Google is sharing the result. Incorrect AI-generated answers are forming a feedback loop of misinformation online."
Hidden You are barely a couple of months in this forum and one of the first things you do is nothing better than disparage someone who you don't know and that someone has been in the forum for a few years now? Why would I be ignorant of online health forums? FYI, I have designed, developed and deployed a few Healthcare related portals in my past life.
Why would responding with properly vetted and curated AI content to a complex question posted by the OP be disgraceful? Can you please point to a specific provision of the TOS that you have accused me of violating?
Do you even understand bleeding edge technology? Can you even decipher the architecture and the ML training of the. LLM's used in the various models?
This forum needs an AI posture.
Edit : Thank you for reporting me. Time for the mods to chime in.
Egg melt: put some eggs in a frying pan and cover it with cheese cooking them simultaneously under glass... It won a Michelin award. But you know what, I just made that whole scenario and the award too up in my head just now, because yesterday I had a patty melt and so this minute figured why not claim it has been actually done, with eggs and claim it's a thing. Who's going to know? But I did happen to catch that bit in the New York times about the lawyer who used an AI research to make his arguments in court and all of the references to the legal actions and preferences cited there and had been made up by the AI and did not exist, and it just so happened that this particular judge actually reads the arguments and their sources and references, thought a couple of these don't seem familiar to me, I think I'll do what I normally should be doing anyway and look them up, and the judge did and then realized they don't exist so of course they're not in the case law books anywhere like they're supposed to be, why not? and then the attorney, caught with his pants down so to speak, went back to AI to ask for new responses.!!! Now let's just say a couple engineers are developing a fusion reaction experimental application and make the same mistake, accidentally melting half of their continent?
park_bear While I understand the objections raised regarding AI limitations, strictly dismissing it precludes consideration of any valuable insights it may offer. My goal in using this assistant was not to bypass human expertise, but to gain additional perspective on a complex issue where people are understandably struggling.
Criticizing response length alone ignores that thoroughness has merit - summarizing multiple angles fosters informed discussion better than brevity alone. Kindly pointing out areas for improvement is reasonable, but blanket condemnation precludes finding nuanced value.
Similarly, labeling responses as "nonsense" closes the door to potentially useful inputs. While not definitive medical advice, discussing treatment experiences and theories can provide helpful supplementary context when properly caveated.
While medical expertise remains paramount, excluding all other views risks a narrower approach than necessary for conditions like Parkinson's with intricate motor and non-motor interplays. All perspectives, properly framed, seem most conducive to benefit when navigating difficult healthcare decisions.
Ultimately, my aim was open exchange of experiences to inform, not replace, medical guidance. The complexity demands weighing varied views - not dismissal. Respectful discussion integrating expertise across specialties, viewpoints and mediums seems most conducive to progress. I believe focusing on constructive refinement, not rejection, best serves people grappling with serious health concerns.
My request stands - further illuminate, don't dismiss. Collaboration across modalities and roles, not competition, will best support community health and wellness over time. I appreciate all seeking the same goal through respectful, multi-faceted dialogue
My response initially was for the sake of Jeanie who had a complex question. I saw that the community had not responded to the OP for quite some time and I wanted to help. I made sure that I had made adequate disclosures and disclaimers before posting my responses from the AI chatbot. I didn't see Jeanie complain.
I am frankly puzzled with the opposition to AI here in the forum. Its not like anyone here in the community is going to lose their jobs to AI.
Are you still in securities trading? If you are worried about AI augmented algo trading, I have news for you. ML and AI have long been used in your area of interest. 😂😊
It is not news to me. AI has its uses. I build my own, private, custom AI for my securities trading. That said, I find it surprising that someone in the field would be so enamored of inappropriate use of AI.
Agree with you and I apologize for my rudeness. I should not have responded to you the way I did. I have interacted with the others over the years and we have been quite civil to each other and. I felt compelled to be the way it has been so far.
. I was fuming by the time I responded to you. But it's not a reason to be impolite to a newcomer to the forum
While I understand the objections raised regarding AI limitations, strictly dismissing it precludes consideration of any valuable insights it may offer. My goal in using this assistant was not to bypass human expertise, but to gain additional perspective on a complex issue where people are understandably struggling.
Criticizing response length alone ignores that thoroughness has merit - summarizing multiple angles fosters informed discussion better than brevity alone. Kindly pointing out areas for improvement is reasonable, but blanket condemnation precludes finding nuanced value.
Similarly, labeling responses as "nonsense" closes the door to potentially useful inputs. While not definitive medical advice, discussing treatment experiences and theories can provide helpful supplementary context when properly caveated.
While medical expertise remains paramount, excluding all other views risks a narrower approach than necessary for conditions like Parkinson's with intricate motor and non-motor interplays. All perspectives, properly framed, seem most conducive to benefit when navigating difficult healthcare decisions.
Ultimately, my aim was open exchange of experiences to inform, not replace, medical guidance. The complexity demands weighing varied views - not dismissal. Respectful discussion integrating expertise across specialties, viewpoints and mediums seems most conducive to progress. I believe focusing on constructive refinement, not rejection, best serves people grappling with serious health concerns.
My request stands - further illuminate, don't dismiss. Collaboration across modalities and roles, not competition, will best support community health and wellness over time. I appreciate all seeking the same goal through respectful, multi-faceted dialogue
I would decline in any case because I am able to distinguish between appropriate versus inappropriate use of technology. As it happens, in this particular case, your invitation seems a bit disingenuous since it is well known that AI is incapable of distinguishing between human and AI generated text. However, it does not mean that humans are incapable of doing so.
Thanks but we have had all the physio etc twice and we are in the Uk so you cannot consult your neuro just like that. Plus the specialists know nothing of the B1 Therapy. I know the potential benefits of B1 and that is the reason it is worth trying for the 5th time. I understand it is trial and error. I asked the same question on Facebook B1 Therapy and got no helpful replies. I am going to trial the Therapy with even less dose than AI suggests. Thank you all the same PD Patient.
You got that right. It's very discouraging to see people putting up AI answers. We have several physicians and several other professionals who have had actual caretaking experience in medicine psychiatry psychology and pharmacology and we don't need misinformation or disinformation for inexperienced or laypeople have to sift through without having had critical training in both clinical professions and research professions, including lacking what are actually professional level training in consuming and critiquing research, without which can lead to very destructive consequences.Ever hear of the "Dunning-Kruger" effect? You just crossed that line and leaped a yard beyond.
Marion, I can understand your trepidation. Technology can be intimidating. This comment is an example of your struggle with technology and to like. Reread your comment and reconsider who you are responding to.
Consider your own opening statement in your comment addressed to me :"You got that right" 😂😭
I do imagine you are enthused with the possible use of AI in health care and diagnosis in particular.
But the model you use - Claude - is a generalist model and as such will be limited and even inaccurate in its responses.
A model trained in the complexities of health would first have to be developed and tested. Google is taking this step with their large language model, or LLM, called Med-PaLM 2. There are other companies in this race.
The testing is moving ahead gingerly at some top hospitals. And it may be some five years before the diagnostic element gets rolled out.
So please do not ‘jump the gun’. You may inadvertently provide misleading advice.Hang on we will get there 👍🏾
Here is an update on Google’s efforts here *A responsible path to generative AI in healthcare*
Thanks Casey. Your comment was very polite and you are respectful.
Despite being at the worst of my disease condition, thanks to all this hatred against AI expressed by a bunch of technology laymen, I am going to reevaluate the offers I have been receiving recently from Silicon Valley firms for a career in the field.
I am a 30 year IT veteran and I have never seen vitriol like this.
This revolutionary technology, which when combined with blockchain, robotics and other emergent technologies, will power the 4th Industrial Revolution. And it is AI that will drive these nascent technologies forward.
But my advice remains: ‘do not jump the gun’. Quietly keep pace with the technology. Exposing others to its potential on this medium is not helpful. Here we want to know, ideally, what living experience you have with a problem and how you resolved it.
the priests of the temple feel threatened their monopoly of the only possible truth given by the divine word of which they are the only interlocutors. So they declared their Autodafé to the AI. Ironic 😁
It will be the case soon, with no counter arguments. But let’s not give pdpatient license to proceed. Powerful tools can be mighty destructive, particularly in the early stages of development, without the necessary guardrails in place.🌺
I'm not a health care provider however my father has Parkinson's so I've done a lot of research. Adding b1 and b6 in the morning helps give energy but also is calming . Don't give magnesium with any kinds of medicine. There has to be at least 2 or more hours between meds and magnesium because it can interfere with medication. It helps a lot of things but read about the different types of magnesium too.
Hi Jeanie. Sublingual is way more powerful than the oral form. If your husband is overdosing at SL 25 mg twice a week, y would suggest taking a two weeks off and start at 25 mg B1 HCL oral/day, and increase 25 mg every two weeks. Or, other alternative, start with a B Complex that has 25 mg HCL B1 in it and a low B6, and then add 25 mg B1 HCL every two weeks. I am saying this alternative because one of the persons i am following (I am tthe Portuguese guy 😁) had great results with the B Complex only, and not so good with the B1 alone. Just an oppinion.
Thanks for replying. That makes good sense. He has had problems with B6 in the past though. Do you know the b complex brand the man is taking? I knew you were the Portuguese guy. You speak good sense. We have just come back from the Algarve. We go twice a year.
We’ve been wondering about super low doses of B1 as well, and are in similar bit different circumstances. Please continue to share your updates and hang in there. My shoulders are killing me and all my muscles hurt from catching and picking up hubby. He’s 17 years in with no DBS option due to severe cognitive impairment.
He was already on Effexor (SNRI) when he started hi dose thiamine a few years ago. I managed to get him up to 1,5 Grams a day for 6 months or so, but then the psychosis symptoms that he gets from too much dopamine (or thiamine) kicked in. 2 years ago we tried 500mg and that was way too much causing anxiety for him. So we stopped it.
For hubby, weak knees and leg buckling happens only when his dopamine dosage is a bit too low. Here’s a theory to ask your neuro about: is the antidepressant increasing his serotonin, and therefore maybe he needs a bit more dopamine? The problem is increasing dopamine May increase anxiety as well, and when you are messing with SSRIs and dopamine changes you need to make very slow changes to avoid nasty things like serotonin syndrome.
Anyway, personally I’d make sure he’s good and stable on the sertraline and dopamine meds before trying to work in the thiamine. Too many changes at once are very difficult at these late stages of the disease. But hubby was on Effexor and thiamine at the same time so I think you can combine them if you want.
Also, if you wanted to wean off the sertraline (slowly), we use melotonin to help manage anxiety. Even in daytime. Hubby s neuro recommends lithium orotate instead of sertraline. But we haven’t been able to test that too much yet.
Hang in there, it’s our 17th wedding anniversary today and hubby had a hallucination and anxiety attack this morning and was grabbing and almost hitting me. I gave him a melotonin gummy and put on his meditation track and he fell right to sleep! This is a terrible disease. You’ve done amazing to make it 30 years!
Good responses leharlover62. You can often have the opposite reactions when you are using SSRI precisely because ssris are stimulative and on the 5 HD serotonin side of the "activating" "tree," so it's possible your husband could be actually overstimulated and end up with restless legs or other neurological symptoms, including something that sort of mimics neuroleptic malignant syndrome or SSRI syndrome. Because of this antidepressants are not the best thing to use for anxiety, despite neurologists and some psychiatrists confidence in using them long-term. There are other medications to try, and if it's a matter of anxiety alone then I think low doses of anxiolytics, including clonazepam or alprazolam and then watching and monitoring to see what positive and negative effects come along, if any.
And I wouldn't necessarily trust a neurologist for this, this sort of thing is actually the specialty of psychiatry. Last time I was up for my annual with my neurologist I happened to mention, echoing something he had said the last time, that he's not trained in psychiatry and that neurology and psychiatry are definitely different fields, and he bounced his head up and down in agreement and asked me why I would even think to compare them.I responded by saying that you never know what a non-psychiatrist non-neurologist might assume so because you have the same specialty board approving both your fields, the certifying boards are named "Board of Neurology and "Psychiatry" in fact (which you will certainly see if you look up above his desk and you will see his certification on the wall will say "certified by the American Board of Psychiatry and Neurology" , so one not fully experienced or familiar might be tempted to think that there were a lot of similarities, well the truth is there aren't. And anxiety is a matter for psychiatry, as my own neurologist once said, "I'm a researcher, I'm not trained in mental diseases and disorders and their management. Yes I can write prescriptions and I might be tempted to, but that's not the same as knowing what I'm doing." So if you're really serious about talking anxiety what you want is a psychiatrist, even though yes you have a neurologist for your Parkinson's too.
Wow. That is exactly the conclusion I came to. What I love about this website is that you are all thinking that maybe B1 is not the answer or at least that lower doses of B1 are the answer. I gave him 25mg of sublingual B1 on Thursday and he already has had problems. He could just be blaming it because he does get these things in his head but I have to wonder.
I think his bad reactions to B-1, even at the stronger sublingual route, suggest that for him, as with some occasional people, B1 is not going to be helpful and I would drop B1 like a hot rock. There's a lot of sulfur in B1 that's what B1 is all about. Sometimes it is too much for people you happen to have certain specific neurological issues, such as a topic skin, allergies that result in skin problems, virtual or real allergies to various sugars, crossover effects with excitatory neurotoxins such as aspartame and MSG which are in many many foods and drinks, all examples that I have encountered along my life path. Nothing helps everybody and so there are some people who are going to have allergic or other sorts of bad reactions.
Hi Jeannie, I have had a little bit of experience with anxiety and it's various mechanisms and treatment, both from being a consumer and from being a practitioner in clinical psychology, so I made some comments although some of the comments were replies under somebody else's response, so you might want to cruise back up to catch all of them just in case anything in there is relevant (obviously no guarantees from the management of course).
Now one thing I have seen nobody remark upon is the dbs, which seems to have been a rather long time ago and I wouldn't be surprised if nobody can say for sure what the long-term effects of early efforts can be or changes in the course. Also I don't know if even talking about it or thinking about it would be helpful or make any sense, however, I just noticed that nobody mentioned it except that you did that he has had it in his history and quite some time going back.
Hi again jeannie, I wrote this rather lengthy, but not that hard to understand, response but it was under somebody else's comment so I wanted to just make sure that you got to see it here, since it was really for you in the first place. But here is where I elaborated a little bit better so this is longer and if you just read that one you will miss some of the better explanations I took time to do here.
Best of luck!
Good responses leharlover62. You can often have the opposite reactions when you are using SSRI precisely because ssris are stimulative and on the 5 HDT serotonin side of the "activating" "tree," so it's possible persons using ssris to treat anxiety could be actually overstimulated and end up with a paradoxical "restless legs" or other neurological symptoms, including something that sort of mimics neuroleptic malignant syndrome or "serotonin syndrome" that can be quite dangerous if they show up. Because of this antidepressants are not the best thing to use for anxiety, despite neurologists and some psychiatrists confidence in using them long-term, mainly out of hypersensitivity over social criticism of excess use of the usual anxiety medications, which are called benzodiazepines. But benzos are standard go to in the short term while you're using the reactions as a diagnostic activity as well as a treatment, in professional and experienced hands rather than lay hands or in the hands of physicians or other practitioners who are not either experienced or specialists in the use of anxiety medications. The biggest problem is knowing how to use the Little Red Riding Hood benefits and impacts of anxiety medications, so that you don't make either mistake of too little or too much, a duration which is too short or too long. Somebody who is either well experienced or specialized it's not going to make those mistakes, but there are plenty of people who are authorized to use and prescribe those medications who don't know what they're doing and so they're going to make both kinds of mistakes, they're going to make the mistake of too little use of anti-anxiety meds or too much use of anti-anxiety meds, but since they are authorized to prescribe, they're going to make mistakes that they don't even know they are making, just like the lady who is giving you advice from artificial intelligence, without realizing that it's not ethical to use your patient as an experimental guinea pig. There are also other medications to try, and if it's a matter of anxiety alone then I think low doses of anxiolytics, including clonazepam or alprazolam and then watching and monitoring to see what positive and negative effects come along, if any, thanks a lot of sense, but you want to be in professional experienced confident hands, not an unprofessional but confident hands, or even professional but overconfident hands or underconfident hands because being the experimental guinea pig in any of those hands is going to make decisions that exceed the Little Red Riding Hood best medium area, with perhaps disasters consequences on the patient.. and exceeding your limits as the doctor when it's the patient who bears the consequences is called "unethical," since as a professional you're not only supposed to know some of your training, you're also supposed to know your limits, so you don't violate either one at the expense of the patient. I described somebody above as acting as a "Dunning-Kruger" , but you should look up the phrase and realize that there are also professionals who don't know their limits and don't know when they're wrong, despite it being the responsibility of that professional to actually do be able to know when they're exceeding their limits because they're overconfident or because they don't understand or care about the effects they're having on the patient. It's one thing to screw with yourself, it's another to do it with a patient who has every reason to expect that you know your limits and don't exceed what you know. Imagine being on the table with a surgeon digging around in your heart and saying "Oops, oh well."
And I wouldn't necessarily trust a neurologist for this, this sort of thing is actually the specialty of psychiatry. Last time I was up for my annual with my neurologist I happened to mention, echoing something he had said the last time, that he's not trained in psychiatry and that neurology and psychiatry are definitely different fields, and he bounced his head up and down in agreement and asked me why I would even think to compare them.I responded by saying that you never know what a non-psychiatrist non-neurologist might assume so because you have the same specialty board approving both your fields, the certifying boards are named "Board of Neurology and "Psychiatry" in fact (which you will certainly see if you look up above his desk and you will see his certification on the wall will say "certified by the American Board of Psychiatry and Neurology" , so one not fully experienced or familiar might be tempted to think that there were a lot of similarities, well the truth is there aren't. And anxiety is a matter for psychiatry, as my own neurologist once said, "I'm a researcher, I'm not trained in mental diseases and disorders and their management. Yes I can write prescriptions and I might be tempted to, but that's not the same as knowing what I'm doing." So if you're really serious about talking anxiety what you want is a psychiatrist, even though yes you have a neurologist for your Parkinson's too.
His anxiety is not obvious on 'on' times but I can tell at 'off' times by the questions he asks me and the way he goes to pieces and the way he worries about things that it obviously is there. I suppose after 30 years this happens.
yes, I had that thought too…if there is anxiety during on times (dopamine too high) and knee buckling during off times (wearing off / dopamine too low ) either the DBS or the timing of dopamine therapy may need to be adjusted. Or add amantadine or inibra to extend on times, and lower the sinemet dose….something like this.
Considering that thiamine HCL, which seems to be much less bioavailable than melt in your mouth thiamine mononitrate (TM) and the fact that some people on this forum have reported an effective dose for thiamine HCL on this forum as low as 25 mg/day, it may be easier to control the dose of thiamine HCL and keep the dose fairly steady. Considering your husband's sensitivity to TM, the oral thiamine HCL may be easier to work with. Here is a little information on thiamine HCL dosing :
You may want to get your husbands prescription meds sorted before attempting B1 again to have a clearer picture of what is helping and what is not helping before adding another variable in B1.
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