PSP and debilitating anxiety

[mac121068]

Hi, all! My 75-year-old dad has recently been diagnosed with PSP. He has suffered intermittently with depression and anxiety since his 30s. He has been on anti-depressants that whole time, but benzos only intermittently. Most of the last 40 years the medication has controlled his bouts of depression, but the last 3 years things have progressively gotten worse. In the last three years he has gotten intermittent ECT's, happening weekly at present -- and recently has been diagnosed with PSP. As of the last few months he has severe debilitating anxiety that only lets up when he's sleeping. He takes benzos three times a day, anti-depressants, PSP meds, nausea pills...

He has been seeing a neurologist and psychiatrist for the last 3 years, and no one seems to be able to find anything that works to get him any relief. The doctors just keep saying they don't know what to do next. It's hard for me to believe that no one else out there has ever experienced this with one of their loved ones, so I'm reaching out here trying to find someone out there that can maybe give us an idea of what to do next. My father is well-loved and taken care of by us all. My mom is an angel. He doesn't ever want to be left alone, and she stands by his side 24/7 so he doesn't have to be. Please help if you have any ideas.

[Xenos]

Hi Mac,

Sorry for your situation.

Maybe you could try thiamine HCL as Dr A. COSTANTINI was not only aiming at PD when he began treating patients, but a whole range of neurological disease.

So, what is there to lose ?

Read RoyProp and Art and decide on a schedule. That is what I would do.

Fingers crossed... And tell the group.

[enjoysalud in reply to Xenos]

I agree!

My son died of PSP, May 4, 2019, at the age of 55years old. I gave him many supplements, but the info on Vit B1hcl from Dr. Constantini had not come to my attention.

I, the mom, am 78 going on 79. I do NOT have PD or any other neurological diseases/symptoms, but I was experiencing balance issues, and joint pain. So, Aug 2018 I started B1hcl at a low dosage. I am up to 800mg in the morning and 700mg at lunch. The difference is VERY evident.

It's hcl so your body gets rid of what it can't use. It's safe. I think all should try this. As Xenos said WHAT IS THERE TO LOSE? I have a friend whose husband has PSP and she started giving it to him (higher dosages at a quicker rate). He and she agree that his balance is much much better.

[enjoysalud in reply to Xenos]

I sent an agreement but it got lost.

I lost my 55 year old son to PSP in 2017. The info on B1hcl had not come to my attention. If it had, along with other supplements I would have given it to my son.

I do NOT suffer symptoms or Dx with a neurological disease, but have had balance and joint pain challenges. Aug, 2018, I started a low dosage of the B1hcl and am now up to 800mg at breakfast and 700 mg at lunch. The difference is like night and day.

As Xenos states WHAT IS THERE TO LOSE?

No harm can come from the hcl as the body dispels what it doesn't use.

[enjoysalud]

Where do you live? Your profile gives NO indication. If you live in the USA there are currently trials being given by Biogen and Abbvie.

[mac121068 in reply to enjoysalud]

I live in the US, St. Louis, MO. I'm unfamiliar with B1hcl and thiamine HCL. Where do you get it? And also, can you direct me to more info on it, any good resources? Thanks so much for all your comments. And I'm very sorry to hear about your son. Also, the trials by Biogen and Abbvie, are they for these supplements?

[enjoysalud in reply to mac121068]

mac...you need to get familiar with all the features on this PSP site. At first it seems complicated and one gets frustrated, but you have to practice to get the hang of it.

I use both the PSP site and scan the PARKINSON SITE.

On the PSP site, about 4 months ago Trixie66 posted LOOKING FOR A PSP CLINICAL TRIAL. The shares under that post will direct you to several trials. You can write LOOKING FOR A PSP CLINICAL TRIAL in the "search bar". It is located on the same line as HEALTHUNLOCKED at the top of this page. When it comes up, on the side will be other posts on clinical trials.

Most clinical trials are conducted by Research universities. UCLA is the one here in Los Angeles, where I live.

To get to information on thiamine hcl ( which is vit B1hcl) you must turn to the Parkinson's site. On that site, in the search bar, write in B1 FAQ. It should come up and the author is Roy Prop.

Good luck.

[enjoysalud in reply to mac121068]

No, the trials by Biogen and ABBVIE are pharmaceutical companies. Since no money can be made from supplements there are few clinical trials, if any, on supplements.

I would also use google.

Immediately after I sent you the reply, I wrote in on the search bar LOOKING FOR A PSP CLINICAL TRIAL. The post by Trixie66 came up first thing. You need to click on it to get to the post.

At first you may be overwhelmed on using this site....don't give up.

Good luck.

[enjoysalud in reply to mac121068]

I am closing my computer until tomorrow.

Get acquainted with curepsp.org There is valuable information on anything you can possibly ask, including clinical trials.

[Hidden in reply to mac121068]

The following link will explain all about HDT / Vitamin B-1 / Thiamine and much more as well as links to other useful HDT information.

healthunlocked.com/parkinso...

Good luck!

Art

[Hikoi]

This woman had the same issue of debilitating anxiety.

theguardian.com/global/vide...

[LAJ12345]

Hi, my husband was suicidal with anxiety and depression just before Christmas and the psychiatrists drugs weren’t helping . He started on Hardy’s daily essential nutrients, and their inositol and greens and probiotics and within 3 days his anxiety was completely gone and he continues to improve. Look up their webpag3 and call their free number and talk to a product specialist. I could not believe how effective they were.

hardynutritionals.com/produ...

Look up my profile to see the full list of other supplements he is on. The real improvement came adding in the Hardy’s products.

[bcowart]

Recently approved (like this week) by the FDA for treating intractable depression, Ketamine is helping some people feel good again. This is big news in the psychology and psychiatry fields.

Here’s a NY Times article from just three days ago.

google.com/amp/s/www.nytime...

Here’s a link to a CNN story about it:

cnn.com/2019/03/05/health/e...

It works in a different way than most antidepressants do. It is not another SSRI (Selective Serotonin Reuptake Inhibitor) like Prozac, Lexapro, etc. Also, it works within hours rather than in weeks.

From a Web MD article:

The director of the National Institute of Mental Health agrees. “Recent data suggest that ketamine, given intravenously, might be the most important breakthrough in antidepressant treatment in decades,” says Thomas Insel, MD.

webmd.com/depression/featur...

That last article was written before the FDA approved this drug as a treatment for depression.

Bob

[rhyspeace12]

My husbands psychois and anxiety has been greatly helped with Remeron and alprozolam.

[Beanie57]

healthunlocked.com/parkinso...

This post should give you all the information you need re HDT.

[interpreters]

Go to a naturopath -holistic doctor and get a full blood test of vitamins,(including all b's) minerals, hormone and heavy metals levels. Its in the GUT not the brain.