My grandmother experienced agitation/restlessness on July 19th after I increased her TTFD dose from 200mg to 300mg on July 16th.
The week of August 1st, I resumed giving her 3 capsules per day (generally as 250mg TTFD + 50mg Sulbutiamine) as I thought she looked lethargic again. The week of August 8th, I increased her dose to 300mg TTFD + 100mg Sulbutiamine. She did not appear to become restless.
On August 15th, I could not give her the pills in the morning as she was too lethargic to drink from a cup.
-
On August 17th, I gave her 300mg TTFD without Sulbutiamine. That morning she required assistance to eat, but in the afternoon she ate lunch without assistance, as if she gained functionality within a matter of hours. For the last three days she has been eating by herself efficiently.
I might start recording videos again starting tomorrow, (I stopped recording on July 31st) because I feel like there is now an apparent difference between her performance in July vs now.
Written by
philipmurray
To view profiles and participate in discussions please or .
Philip, I just want you to know that I think you are WONDERFUL to be tracking your grandma so diligently. You must be a WONDERFUL person yourself! Thanks for sharing, I had never thought of video taping my HwP. Good luck and Blessings to the both of you!
FYI - Not sure if you saw my updated post on August 24. The improvement I saw in her condition between Aug 1-7 and Aug 17-23 has disappeared. Just putting this disclaimer as TTFD is not recommended in this form, and it was probably reckless of me to state I was having success with TTFD without waiting for more time. I am still troubleshooting if it is potentially related to thiamine overdose or lack of cofactors.
Well, I have not seen any improvement with hubby on sublingual B1, 100mg every other day. Had upped it to every day, and maybe he got worse? Stopped it for almost month and saw no difference but hard to tell cause he's never been one to be able describe any illness, etc. However, I am now looking into B1 in IM (intramuscular) form (if I can even get it) and do the original Dr Constantini protocol of that 2x week. I'm leery of doing the pill form as Lord knows, he takes enough pills! Thanks, I do wish you and Grandma the very best.
I've been browsing the facebook forums. Apparently with the sublingual B1, there is uncertainly over how long you have to hold the saliva in before swallowing it. This would seem to indicate it doesn't immediately get absorbed once the tablet is finished dissolving, but you have to hold the saliva under the tongue.
From Daphne: "When I first took superior source microlingual tablets I used to swallow the dissolved tablet after a few minutes and I needed 100mg a day to achieve my ‘sweet spot’. When I started holding the saliva in my mouth longer to give it time to pass through the mucous membrane and into the blood stream my dose to achieve my ‘sweet spot’ was 25 mg only twice a week."
Also apparently they do not recommend the superior source B1 on the parkinson's thiamine HCL facebook group, most there are taking oral HCL.
-
On another topic, my grandmother went to the hospital for a week after she was unresponsive on morning (this usually happens on a very high pressure day, but this day was particularly high pressure). She is getting out probably tomorrow.
They did a blood test on her, and apparently she had low potassium. I hope that's why I ran out of luck with the TTFD earlier (as its recommended to supplement with a safe amount of potassium), and hopefully when I try it again it will work again.
Gosh, thanks for the info. I don't go on FB, I have Facebook Phobia! That is good info about what Daphne says, but I think my local pharmacist will get me the B1 in intramuscular form, will know next week. Since hubby takes so many pills, I opted for the sublingual. I will let you know how he does in this regard. As far as Grandma, does she also have huge BP swings along with high BP? Husband can swing from hypertensive crisis numbers to incredibly low BP with decreased mentation (like 58/42) within a couple of hours. The cardiologist is trying to figure out why and he will be getting several tests this week, but its PD of course. When the BP drops, I give him a good quality electrolyte solution, almost a full dose. He usually comes out of these hypotensive crisis's within 5 to 10 minutes and its scary as heck. Electrolytes can be tricky with the elderly, so I watch him quite carefully (he is 72). I give it to him about once/twice a week when he crashes as I really have no other solution, and neither do the docs at this point. Then when he has sustained high BP, I give his Lisinopril as needed. Not ideal, but its what me and the doc came up with. Anyway, I'd also suggest supplementing Grandma's diet with high potassium foods naturally - with the doc's permission of course. Good luck, PD is scary enough without without the BP issues. This life is certainly a journey, and I figure that these days with him are ... my test as well. I plan to pass The Test as best I can! Sending love to Grandma! Thanks for informing me on what Daphne said.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
That is good info about what Daphne says, but I think my local pharmacist will get me the B1 in intramuscular form, will know next week. Since hubby takes so many pills, I opted for the sublingual. I will let you know how he does in this regard. As far as Grandma, does she also have huge BP swings along with high BP? Husband can swing from hypertensive crisis numbers to incredibly low BP with decreased mentation (like 58/42) within a couple of hours. The cardiologist is trying to figure out why and he will be getting several tests this week, but its PD of course. When the BP drops, I give him a good quality electrolyte solution, almost a full dose. He usually comes out of these hypotensive crisis's within 5 to 10 minutes and its scary as heck. Electrolytes can be tricky with the elderly, so I watch him quite carefully (he is 72). I give it to him about once/twice a week when he crashes as I really have no other solution, and neither do the docs at this point. Then when he has sustained high BP, I give his Lisinopril as needed. Not ideal, but its what me and the doc came up with. Anyway, I'd also suggest supplementing Grandma's diet with high potassium foods naturally - with the doc's permission of course. Good luck, PD is scary enough without without the BP issues. This life is certainly a journey, and I figure that these days with him are ... my test as well. I plan to pass The Test as best I can! Sending love to Grandma! Thanks for informing me on what Daphne said.
What is TTFD (thiamine tetrahydrofurfuryl disulfide) 
