PD Nausea and B1 HDT

[Scout222]

Would appreciate some constructive feedback from forum members and thanks in advance. The patient is my partner of many years and up until mid last year was still teaching until the symptomatic increase in her PD forced a premature retirement. She is in her mid 70’s and was diagnosed with PD in 2020 following which a number of neurologist visits have occurred.

Up to that point I was more of a supportive observer until having to rapidly play catch up (re PD medical aspects) and to take on more of a very involved carer when the above deterioration in her condition became apparent. The PD illness is further exacerbated by a long standing asthma condition, cerebral arthritis and a tendency towards anxiety on occasions. Does tend to make accurate symptom recognition/treatment somewhat of a challenge on occasions.

Regarding PD, there is a nominal tremor in the right arm. Fatigue, sleeplessness and a shuffle step can come and go. Gastroparesis is evident from time to time as is brain fog and intermittent cognitive lapses but the most debilitating is the unexpected nausea attacks which we would very much like to alleviate to some degree therefore keen to hear from any member who has had some success on that front. On the limited ‘up’ side there are a few periods of virtual normality.

Regarding the nausea, some months back she was introduced to a half ‘Alepam’ tab to be taken as and when anxiety was observed and it was during said administration of this drug that I noted that it generally stopped a nausea episode within say 20 to 25 minutes. A full tab used if the episode was more severe.

On a related issue, I recently came across the B1 HDT therapy topic on the web and have since purchased the book and followed up buying a quantity of sublingual B1 tabs. Commenced the basic dosage of a single 100mg tab on Monday, Wednesday and Friday. Third week today. No obvious change to any PD symptom thus far. What is the most up to date suggestion re soliciting some sort of response to the therapy to actually obtain even a small indication that something is happening?

Think I will leave it at that for this first post. Cheers

[Fed1000]

Hi, I solved the nausea (from Levodopa) by halving the dose in two parts and taking two separate intakes over time (instead of 1 pill of Levodopa 100+25 h.8, take 2 half h.8 and h.12). Fatigue/tiredness is a chronic aspect of PD. We all use energy drinks, supplements and lots of exercise. PD causes muscle stiffness and tension and falling asleep under these condition (at least in my case) is difficult. I solved the problem by taking Levodopa (half a dose) shortly before going to sleep, naturally taking care to allow at least two hours to pass in case of protein intake. I am also taking Vit.B1 sublingual 50 mg. a day but I had to stop because the motor symptoms increased in intensity. I’ll resume in a few days. Vit.B1 can cause this especially early on and if taken under the tongue. I hope I’ve given you some food for thought to work on.

[Scout222 in reply to Fed1000]

G'day Fed1000 and thanks for your prompt response. If I may digress - obviously one cannot comprehend the personal experience of PD sufferers however from a carer's perspective I find it most frustrating that my so called "survivor's medication kit" is quite empty when you are looking for something to ease the suffering etc. of your partner but back on topic -

On past advice from her neurologist my wife takes 1.5tabs of Madopar 125 four times per day which seems to be a fair bit higher than what you are on so I will leave that one in abeyance for the time being. We are actually looking to move to another neurologist shortly. Since I had to become more involved I find from a logical standpoint that some past experiences/advice have been a bit hit and miss. Doesn't hurt to get a second opinion in any case. We have also provided a sample for DNA collection to assist a gene research situation in Brisbane, Australia.

Note your comments re energy drinks etc. and am looking to expand the intake of similar in the days ahead. Been too weak to fit in much exercise but it is on the agenda. The recommended pill use so far presents a few questions as well particularly from a risk/benefit point of view - Ongentys being a case in point i.e., one of the selection. Motilium was scripted as an anti nausea medication - does not work and similarly Mirtazapine was scripted as a leveler (my terminology) with a sleeper component....first bit does a good job but the second is a waste of space. Talk about trial and error. Anyway on and upwards as they say! We shall persevere with the current B1 dose for the time being ..... Cheers

[graham646464]

I use B1 sublingual every other day . No noticeable direct effect on P symptoms but generally feel much better, this after 3 weeks.

[Scout222 in reply to graham646464]

On another thread I was advised that the 100mg dose x 3 days of B1 sub lingual was too high along with the suggestion to reduce it to 50. Will advise the result in a week or three. Cheers.

[graham646464]

sublingual goes direct into blood and is not affeced by digestion etc. I belive you can’t overdose on sublingual

I will be interested to hear how you get on

[Scout222 in reply to graham646464]

Thanks for the comment G6. I am not qualified to offer an accurate response however logic tells me that it is possible to overdose on most things and I don't see sub lingual as being an exception. On another front nausea and bladder issues were becoming bothersome but the former has abated somewhat and I would like to believe that it is the B1 (now at 50mg x 3) now in week 4.Will advise. Have a look at the thread by Markbit. I found it quite informative. Cheersx

[Scout222 in reply to Scout222]

To add a final comment to the Nausea aspect. During a recent visit to one of our hospitals as the result of a rather sever bout of nausea, I was party to a Q&A session with a chemist. Proved to be quite valuable. The Ongentys (opicapone 50mg) was introduced around the same time as the neuro changed the madopar 125s thus creating an overdose situation. I stopped the opicapone a while back and the nausea went! Not the same set of circumstances but Fed1000 (above) was almost n the money re the cause.

Still persevering with the B1 but still no change noticed.

Re the waterworks...specialist recommended a supra pubic catheter, did the operation and promptly went on holidays, see you in a month for a full work up!! Not the end of the earth but we have definitely had better Christmases. The power blackout due to a severe storm did not help!

Patient has become rather frail so will be looking for advice, supplements etc. to put some condition back on. The negative result on the mental perspective is also a problem.

Best to all for the coming 2024! R