Celery Seed Extract - Update: Did Not Work For Me

[park_bear]

Update 10/20/2019

At this point in time even a very small quantity of celery seed extract causes me dystonia. By small quantity I mean one third of one capsule. The benefit I was receiving has dissipated. For those who are not using this I recommend looking elsewhere. For those who are using this and receiving benefit I recommend using the smallest possible dosage.

--------------------------------

Original post:

This study was brought to our attention by Iqbaliqbal:

DL 3 n butylphthalide therapy for Parkinson's disease: A randomized controlled trial

spandidos-publications.com/...

The unpronounceable chemical name in the title goes by NBP or 3nB for short. Test patients received 200 mg of NBP three times daily. Over a period of 3 to 6 months they experienced a significant improvement, whereas patients receiving the placebo declined, as shown by the charts of the study results reproduced above.

Here are some selected results after six months of treatment:

................................................Score..... Change from baseline

Bradykinesia........................... 21.72 ....................-7.14

39 Item Questionaire ..........27.23 ..................-13.26

The active ingredient is a component of celery seed extract. This can be purchased from Amazon or VitaCost. Credit to Despe for finding a product from Natural Factors that specifies the amount of NBP it contains:

amazon.com/dp/B00EDJN330/re...

vitacost.com/productResults...

To dose according to the study I took three 75mg capsules of a Swanson's product three times a day. Swanson's used to specify the amount of NBP it contained but they changed their labeling:

amazon.com/gp/product/B003S...

Kudos to the publisher who has made the full study available for no charge.

UPDATE 7/14/2019 and 8/19/2019:

I started taking this the third week of April, 2019. About a month and a half later, in early July, I noticed increasing dystonia (muscle tightness). In a comment below Kia stated he experienced dystonia as result of taking this. Mindful of that I took about a one week break and the dystonia resolved. I then resumed at a lower dose of one 75mg capsule 3x daily. So if you decide to try this be on the lookout for dystonia.

As of August I have reduced my C/L 25/100 from 4 doses daily to 2-3 doses daily. Also I am able to type with my affected hand instead of using speech-to-text, and my exercise tolerance has improved.

No decrease in blood pressure or increased urination, contrary to its reputation as a diuretic.

Others who are trying this are encouraged to report back in, especially after 4 months or more!

------------------------

Update September 6, 2019

Within the last week or so I developed dystonia again. Stopping the celery seed extract did not help, nor has resuming two capsules per day helped. At this point I have pretty much recovered from motor impairment which is marvelous, but I am having strong dystonia, which is not marvelous.

Based on this result, for others who are also taking celery seed extract, you may want to consider tapering to a low dosage or even off of it altogether for now.

[KERRINGTON]

Ordering tonight !

[park_bear in reply to KERRINGTON]

How is it going?

[KERRINGTON in reply to park_bear]

Unfortunately I had to discontinue using it after a week as it had greatly exacerbated my hypostatic blood pressure. I was on Swanson's, 2 capsules 2 to 3 x a day. My husband who has high BP is taking just 2 to 3 capsules daily, and has noticed a few better first readings. I'm urging him to increase his dose.

[Xenos]

... and kudos to you Park_Bear to bring our attention to this. Moreover in this ready-to-go form.

Great post.

[Xenos]

The British/French version says 1.5 g per serving when the US counterpart mentions 75 mg (85% 3NB).

How do you understand such a difference ? A typo maybe ?

[park_bear in reply to Xenos]

Could you give me a link to the British/French version? I would like to see it before venturing an opinion. I will note that 1.5 g would be the weight of the total contents of three capsules.

[Xenos in reply to park_bear]

Hi Park_Bear. Here it is (There is a button to flip between US and "Royaume-Uni").

swanson.fr/p/Swanson-extrai...

One more word : I called them (Europe). They say they import the product from the US, It's exactly similar... I'm not that sure, even though it makes sense.

[park_bear in reply to Xenos]

All I can say is that page is messed up. The bottle is clearly labeled "extract", and that ingredient panel refers to whole seed.

[LAJ12345 in reply to Xenos]

Is one extract or active ingredient and the other whole seed?

[Xenos in reply to LAJ12345]

Yes. I think Park_Bear is right.

[parkie13]

Please keep us informed and how you are doing. Mary

[park_bear in reply to parkie13]

See updated post!

[JAS9]

Awesome! Thanks, bear.

[rhyspeace12]

thanks, i ordered some!

[Despe]

Thanks Park_Bear.

What about people with normal BP and frequent urination? From what I read, it's diuretic and for someone who has frequent urination problems, it will probably produce more bathroom trips.

[park_bear in reply to Despe]

I do believe some people take this to treat high blood pressure. My blood pressure is normal so I guess I will find out what this does to normal blood pressure.

From my experience frequent urination has to do with irritation of the urinary tract. This can be due to urinary tract infection. If not, I find that a combination of hyaluronic acid, aloe vera, and marshmallow root coats the urinary tract and reduces inflammation. This combination was recommended by Dr. Shallenberger.

[Despe in reply to park_bear]

Thanks! My husband is taking pumpkin seed oil extract capsules, just started. See how it goes. He doesn't have UTI. The combination you mentioned, do you have to take the supplements separately?

[park_bear in reply to Despe]

No, I take them all at once three times a day. For the aloe I use a concentrated version that is encapsulated.

[park_bear in reply to Despe]

4 months in, no decrease in blood pressure or increase in urination. Just one person's report.

[Despe in reply to park_bear]

Congrats in order! Are you satisfied with the results? What symptom did you expect to improve?

[park_bear in reply to Despe]

See my revised posting at top for symptom improvements.

[ddmagee1]

Thanks park bear! You are looking out for us fellow "Parkies". Knowledge is power, is what a well respected neurologist tells his Parkinson's patients.

[Gioc]

These are good improvements for such a simple supplement.

thank you

[1953bullard]

Why not just order the 600 mg one and take one a day?

[park_bear in reply to 1953bullard]

Which "600 mg one" are you referring to?

As to whether 600 mg once a day is as good as 200 mg three times a day, all I know is that the investigators apparently did not think so since they used the latter dosing.

[1953bullard in reply to park_bear]

amazon.com/Biofinest-Celery...

[bassofspades in reply to 1953bullard]

"PRODUCT NOT FOUND " :*(

[1953bullard]

I just hate to take 9 more pills a day if I could take one

[park_bear in reply to 1953bullard]

Yes I agree with you. The trouble with the brand at the link is that they blather about "3 NB" and "phthalides" but the only thing they actually state for a fact is that it is celery seed extract. Assuming it does contain 3 NB we have no idea how much. At least in the case of Swanson's we know how much (edit - or we did before they changed labeling). In other words, the marketing suffers from hype. As an alternative I would rather go with the honestly marketed bulksupplements celery seed extract.

By the way, a chemistry laboratory I contacted quoted me $750 to analyze the bulk supplement powder for concentration of 3 n butylphthalide. Mulling that over.

[tryit in reply to park_bear]

Thanks for your insight park_bear. Swanson has dropped 3 NB from their bottle of celery seed. They only show 42.5% Phthalides, at 150mg how many do you take/day? I ordered from Swanson and another vender , both listed3 NB , but on arrival neither listed NBP.Could you give me some guidance.

[park_bear in reply to tryit]

Most disconcerting. I take 3 of the Swanson's capsules 3x/day. If they are not going to vouch for the 3nb content that is very troublesome. A chem lab wanted $750 to test bulk celery seed extract for 3nb. Will mull that over.

[tryit in reply to park_bear]

park_bear. Do you know if anyone has reached out to Swanson about their labeling of product on Amazon? I tried by filling out complaint on amazon, but got no reply.

[park_bear in reply to tryit]

Don't know. There is now a Natural Factors brand that states the 3nB content.

Also I have dropped my dosage down to one of the Swanson's tablets 3x daily. See revised post above for details.

[MWLE]

I don't like the fact that so many dropped out from the study on the NBP Group. Why did so many "Discontinued Intervention" including withdraw as compare to the Control group? At the end of the study 22 discontinued intervention while only 6 from the control group. That is 3.5 times the number discontinued intervention compare to the control group!

Also of note, the Swanson brand that park_bear linked to in the initial post state that it is "standardized to minimum 85% 3-n-B". Since this seems to be the key compound and I haven't seen other brand advertising the amount, I would order the Swanson brand from Amazon in the US.

[park_bear in reply to MWLE]

Good catch as to the dropouts. They claim the adverse effects were minimal. I guess those of us who try this will find out.

You are correct - only the Swanson's brand (edit: did state) states the amount of 3nb.

[park_bear in reply to MWLE]

I believe the dropouts were due to dystonia. I was able to remedy this by reducing dosage.

[mj2dg]

Very interesting - I've been taking celery seed extract for several years primarily as a mild diuretic. I had no idea it might be contributing in improvements in my PD symptoms.

Thanks for the head-up. I'll have to do some more research on this.

[Hidden in reply to mj2dg]

Have you experienced any side effects?

[park_bear in reply to Hidden]

Edit - dystonia which I remedied by reducing dosage.

[felixned]

It is a diuretic so the drop outs mentioned by the study could be due to the fact that some folks hate to run to the restroom or wake up at night. Park_bear please keep us posted on the results of your experiment

[park_bear in reply to felixned]

See updated post!

[Xenos]

Hi Park_Bear,

I just ordered the capsules from the US Swanson. I expect to begin in two weeks (FedEx delay).

Hope you will keep the group posted about your experience.

[Hidden in reply to Xenos]

Have you noticed improvement taking the Celery Seed Extract?

[Xenos in reply to Hidden]

I got them a few days ago and did not begin to take them because I wanted to try B1 again, from a clean sheet of paper.

An then there was a post about the adverse effects of celery extract on dystonia in people with dominant akinetic - rigidity...

[Hidden in reply to Xenos]

Thanks For the reply. I’m not sure which dominance I have, My neurologist never told me. However, diagnosed four years ago and I’m taking 4 mg of neupro patch 1 mg of ragasiline and 2 mucuna 40% three times a day. I have also been taking 2002 I have also been taking 2 grams of B1 daily. I wants my new room last month he said I had little or no progression since the year before. My most notable symptoms are rigidity and slowness but they are minor. I have very little tremor if any. My biggest complaint is endurance while exercising even though I’ve been exercising vigorously for over 20 years. I started the celery seed extract about two weeks ago and I’ve noticed some improvement to my mood and gait. I’m also taking Vinpocetine and PEA.

[ConnieD in reply to Hidden]

Have you found PEA helpful? Thank you 😊

[Hidden in reply to ConnieD]

It’s hard to say because I started vinpocetine and PEA at the same time. I rarely have pain and mentally, I’m more focused and clear.

[tigerclaw in reply to Hidden]

Hi Skme, How's so far your experience with PEA can you update us ? My mom is 75 and she has issues turning in the bed so she sleeps one sided and lower back pain, her walking not that great either.. Wondering if this got to do with the neurological pain and suffer as she is a type 2 diabetic as well... I would love to hear your experiments regards PEA so maybe it will help her as well.. Thanks

[ElliotGreen in reply to Hidden]

What is PEA?

[Astra7 in reply to ElliotGreen]

It’s an anti inflammatory with a long name! Should come up if you google it. I think it helps with turning in bed at night, but can’t be sure. Takes weeks to kick in.

[Vegegardner in reply to Hidden]

What brand of B1. ? Who from?

[Hidden in reply to Xenos]

Dictation didn’t work so well, I meant to say that I went to my neurologist last month and said I had little to no progression since the year before. I attribute that to the B1. He told me that I’m still less than stage one.

[MBAnderson]

Great thread park bear

[KERRINGTON]

Hi..notice anything re celery seed extract yet ?

[park_bear in reply to KERRINGTON]

After 4 months have reduced my C/L. See updated post.

[KERRINGTON in reply to park_bear]

That is incredible. I had to discontinue as it exacerbated my hypostatic blood pressure. My husband is using it now to reduce his BP and it seems to be helping.

[KERRINGTON]

What is your daily dosage ?

[park_bear in reply to KERRINGTON]

4 g thiamine daily.

[KERRINGTON]

Oh, sorry, meant the celery seed. BTW...I'm down to 500mg B1 after 15 mos of it.

[park_bear in reply to KERRINGTON]

3 of these 3x /day:

swansonvitamins.com/swanson...

Update - dropped down to one capsule 3x/day.

[KERRINGTON]

Thanks, I'll try for a few months, good for lowering my husband's bp too !

[Kia17]

Today I started taking celery seed extract and experienced dystonia. I searched and noticed;

“Celery is a cholinesterase inhibitor. It inhibits the acetylcholinesterase enzyme from breaking down acetylcholine, thereby increasing both the level and duration of action of the neurotransmitter acetylcholine. This can result in urinary retention or a full bladder that gets fuller and fuller with the inability to urinate”

It proved me again my theory that Choline , Vinpocetine , Celery seed extract or any supplements that increases Acetylcholine could exacerbate Rigidity- dominat PD symptoms but helps others like tremor-dominant PwPD.

[park_bear in reply to Kia17]

Very interesting. I am tremor/motor impairment dominant and have noticed that anticholinergics can aggravate my symptoms.

[bassofspades in reply to Kia17]

Makes perfect sense! Thanks Kia!

[jenniferdunstan]

Which brand of celery extract do you recommend ordering from Amazon? The quality of supplements can vary considerably in my experience.

Once again, your post has lifted my spirits a great deal. so I thank you!

Jennifer

[park_bear in reply to jenniferdunstan]

See updated post for products and my report of improvement.

Glad to have lifted your spirits!

[LAJ12345]

healthunlocked.com/rlsuk/po...

Here’s a post on celery from the restless leg page.

[faridaro in reply to LAJ12345]

Very interesting - thanks for sharing!

[LAJ12345]

Celery has furanocourmarins which are toxins. Parsnip and grapefruit do too!

[wriga in reply to LAJ12345]

Hi LAJ,

Where did you find the info about furanocoumarins in celery and parsnips? If this is validated in terms of quantities, then celery will increase levodopa half-life by inhibiting CYP3A4. This could be important.

[LAJ12345 in reply to wriga]

I think this was it.

ncbi.nlm.nih.gov/pubmed/115...

It was a while ago. Sorry I should have posted link at the time.

This one was interesting too

agriculturejournals.cz/publ...

[Gioc in reply to LAJ12345]

Thanks Laj , very interesting. It seems to me that the amount of furanocumarins contained in celery is irrelevant but we do not know the true furanocumarinein concentration in the celery seed extract. Does it seem to you too?

[park_bear in reply to wriga]

Furanocoumarins are present in celery at the low parts per million level. I was unable to find any study of the amount in celery seed. If the concentrations in celery seed are similar, since we are consuming celery seed at the gram level, the amounts of furanocoumarins consumed would be measured in the low micrograms, which is insignificant.

It looks like the furanocoumarins are what is responsible for the inhibition of CYP3A4 by grapefruit:

medicalnewstoday.com/articl...

[LAJ12345 in reply to park_bear]

Often compounds in seeds are much more concentrated and celery is mainly water. But compounds in seeds aren’t necessarily in the same ratios as other parts of the plant.

[Gioc in reply to park_bear]

Certainly Park_Bear, you should read Wriga's posts on CYP3A4 inhibition and the bio availability of Ldopa, if you haven't read it yet.

[park_bear in reply to LAJ12345]

As I set forth in the above comment, the amount of furanocoumarins involved with celery seed extract consumption is likely in the low micrograms. Consumption as a result of eating grapefruit is vastly greater:

sciencedirect.com/science/a...

" It is estimated that the average consumption of furanocoumarins in the United States and Germany is 1.3 mg/d and 0.562 mg/d, respectively, and grapefruit juice contributes to ∼73% of furanocoumarin intake from foods"

While furanocoumarins can be toxic, they also have a benefit:

" furanocoumarins potently exerted antiproliferative activities against cancer cell growth through modulation of several molecular pathways, such as regulation of the signal transducer and activator of transcription 3, nuclear factor-κB, phosphatidylinositol-3-kinase/AKT, and mitogen-activated protein kinase expression."

[tryit]

I see that celery seed extract from Swanson has magnesium stearate read where its a dangerous compound. Do you have any info?

[park_bear in reply to tryit]

Magnesium stearate is the magnesium salt of stearic acid. Stearic acid is present in our diet in much larger quantities from natural sources so I do not believe that is a problem.

[deedee777]

Hi park_bear, After reading your very informative post about Celery See Extract, wondering what have been the results of your (or any other member) trying Celery Seed Extract for Parkinsons?

[park_bear in reply to deedee777]

After 3 months I have experienced an improvement in my exercise tolerance which I attribute to taking celery seed extract. So patience with this is in order. No adverse effects felt.

[Farooqji in reply to park_bear]

Thanks for the update

[park_bear in reply to Farooqji]

See updated post for more improvements.

[Farooqji in reply to park_bear]

Can you please provide the link

[park_bear in reply to Farooqji]

I meant go to the top of this post. Sorry it was unclear.

[Icequeen10]

Are you taking celery seed caps?

[park_bear in reply to Icequeen10]

yes

[Despe]

amazon.com/dp/B00EDJN330/re...

Found this on Amazon.

[park_bear in reply to Despe]

Excellent! Will add to original post.

[Despe in reply to park_bear]

PB, As I wrote on my previous comment, it's too bad my husband can't take it as it's a diuretic, and he's got urination frequency problems. . .

[park_bear in reply to Despe]

Due to prostate irritation? Pumpkin seed extract is good for that.

[Despe in reply to park_bear]

No, no prostate issues according to the urologist. Symptom of PD and MP side effect although he is doing better with ground Nutmeg.

[tryit in reply to park_bear]

park_bear: how many do you need per day to get the correct dosage using the B00EDJN330're posted by Despe? Thanks for all the info you pass to us uninformed.

[park_bear in reply to tryit]

To get the same dosage as in the study is would be 3 capsules 3 times a day. After a few months I found I had to cut back my dosage because I was starting to get dystonia.

Update: I now take one capsule 3 times a day.

[bassofspades in reply to park_bear]

Thanks pb! I maintain that you are the best of the best!

Curious to try. Do you recommend that i start wth 1x3 a day or, 3x3 a day then drop down if i get ongoing dystonia?

[park_bear in reply to bassofspades]

Thanks for your kind words!

I am thinking start with 3x3 as a kind of loading dose. At the first sign of new or increased dystonia take a holiday until it resolves. Then resume at 1 x 3.

[bassofspades in reply to park_bear]

Sounds like very sensible advice. Thanks again my very good friend !

[bassofspades in reply to park_bear]

Since you cut down have you noticed any change in symptoms or just reduced dystonia?

Thanks my friend!

[park_bear in reply to bassofspades]

Did not notice any increase in PD symptoms after backing off the 3 x3 dosage.

[ConnieD in reply to park_bear]

Park Bear 🐻, did you have episodes of dystonia prior to taking celery seed? Right now I only have it first thing in the am do you think I should start with 2 capsules 2X a day? I already have the bottles but haven’t tried it yet. Thank you 😊

[park_bear in reply to ConnieD]

Your dosage plan seems reasonable.

The dystonia I got from the celery seed extract was unusual - a tightness in the fascia around my ribs on the affected side. Never have experienced PD induced dystonia in that location.

[ConnieD in reply to park_bear]

Im glad it went away, dystonia is something very uncomfortable. Thank you as always for your response!😊

[bassofspades]

My only worry is the money. 9 pills per day equals over $50 a month. Is my math right?

[park_bear in reply to bassofspades]

Yes your math is correct. If you drop your dosage at some point then the cost will decrease accordingly.

[bassofspades in reply to park_bear]

Good thing vitacost had a coupon today

[Grumpy77 in reply to park_bear]

swanson capsule is 150 mg per capsule, is that correct?

That means if my brand is 75mg i will have to start with 6 caps 3 times per day

Edit; I re read the original post and noticed its 75mg,, but i got carried away because the advertised swanson brand says 150mg per capsule amazon.com/gp/product/B003S...

[park_bear in reply to Grumpy77]

Yes it is 75 mg.

Be on the alert for dystonia (muscle tightness). If you experience dystonia do not be discouraged - just take a holiday until it disappears and restart at a lower dose. I experienced dystonia once again at my current lower dose and am taking a holiday again.

That said, the improvement I have experienced is near miraculous - my gait is greatly improved - I was not self-conscious walking around the supermarket yesterday. My balance standing on the affected foot is almost as good as standing on the unaffected foot. I can do things once again with my affected hand - button buttons, untie shoes, type.

[Grumpy77 in reply to park_bear]

Thats Great news, I really happy to hear this

If i may ask your thoughts- do you think celery effect is merely symptomatic like pd meds suppressing symptoms or do you think its actually slowing down pd progression in real time?

[park_bear in reply to Grumpy77]

I do believe it is improving the underlying condition because I have been off it for a few days now and my motor abilities have retained their improvement.

[tigerclaw in reply to park_bear]

Hi park bear, how about tremor ? Any improvement from Celery seed extract ? My mom left hand and arm looks little more different I think maybe the water retention , but she going to restroom quite often . But her tremor on both hands are present.. Just wondering if it will help on her motor function as well as better walking.. Thanks park bear your info's are life saver

[park_bear in reply to tigerclaw]

I did not have much tremor when I started the celery seed extract so I cannot say. It did improve my motor impairment, but in the end it caused dystonia which I am still battling with. So I cannot recommend it. If you decide to try it anyway use low dosages.

[bassofspades]

Received my shipment yesterday. Took one capsule last night to test for sensitivity, allergy etc. Then 2 capsules in the morning, 2 vith lunch. Forgot about it and by 2 or 3 pm i noticed i had good control of my hands, little to no tremors, and then I remembered... the celery seed extract! I didn't expect it to do anything so soon, but since my case is mild and i take 100 other supplements...maybe synergy?

Will keep an eye on this.

[ParlePark in reply to bassofspades]

Bass, please let us know in a month or so if extract is still effective with tremors? Mine are very intermittent, I mean occur everyday but again are intermittent and of different severities.

[bassofspades in reply to ParlePark]

I will certainly keep y'all posted however it goes!

[chartist in reply to bassofspades]

bass,

That puts you in an interesting position! Since you know that the specific amount of celery seed produced a very specific result/response, it will be easy for you to test other supplements with your existing regimen to see if they can produce similar results when combined with your existing regimen. Please keep us updated on how your celery seed experiment goes, because there are tons of people who will want to hear how you do over time!

Art

[bassofspades in reply to chartist]

Thanks Art, indeed i will

[faridaro in reply to bassofspades]

Would you mind to share which brand did you get - is it Natural Factors?

[bassofspades in reply to faridaro]

Yes that one.

[bassofspades in reply to bassofspades]

About one week on celery seed extract and this is what I have to report. Mornings are historically the worst for my symptoms and since starting on celery seed extract there hasn't been much change during those times , but the afternoons have been improving. I still notice bradykinesia but my hand dexterity has improved a small but noticeable amount.

I want to add that i have experienced an increase in sweating and leg cramping , but so far no change in urine output.

[alexask]

This seems to work for me. Can see it in my face.

[Farooqji in reply to alexask]

Can you please explain it a bit more

[alexask in reply to Farooqji]

The masked face is a Parkinson's symptom. A general look of being angry and smiles become grimaces. Smiling eyes are gone. But for me with celery seed extract (and/or with significant exercise) it comes back. Mannitol in the morning. One celery seed extract in the afternoon. Exercise when possible. 3 years since first symptoms. Only real issue at the moment is lurid dreams waking me up. But normally I can get back to sleep.

[Farooqji]

Hi park_bear

Are you still taking celery seed extract and benefitting from it?

[park_bear in reply to Farooqji]

It has been very interesting and promising. I will be posting an update when my situation is stabilized. At this moment in time I am completely off levodopa for the first time in the five years since my diagnosis. The amount of celery seed I am taking has been drastically reduced to about a cc of plain celery seed tincture every other day - not the extract at this point, because it is now too strong for me and causes dystonia. That is the tricky aspect to celery seed - too much causes dystonia and the amount that qualifies as too much decreases over time. This is my experience at any rate.

[Farooqji in reply to park_bear]

Thanks for the concise update

[alexask in reply to park_bear]

Wow. Completely off levodopa. That is pretty impressive.

[ParlePark in reply to park_bear]

Great news PB!

[ConnieD in reply to park_bear]

Can’t wait to hear more Park Bear 🐻!!

[JAS9 in reply to park_bear]

Fingers crossed for you, PB. Are you still taking B1?

When you're stable, I'm very curious about which PD symptoms are improved/gone.

I've ordered some and it should be here tomorrow.

[park_bear in reply to JAS9]

Yes I am still taking vitamin B1 and I regard it as an essential part of my program – 2.5 g in the a.m. and 1.5 g in the p.m.

----

This is an addition to my prior comment to provide a complete picture of the potential downside as well as the upside. I hope everyone who has read the prior comment reads this one as well. Over the last few months I have developed a chronic dystonia in a portion of the bicep on my affected side. I have no way to know whether this is due to the celery seed or not. Since we know that the celery seed does cause dystonia this may be the guilty party.

[JAS9 in reply to park_bear]

Given your experience I think that I'll take a more cautious approach. I would usually try to take the same doses as those who were successful in the study, but I see no real reason not to start with one 75mg capsule a day for at least a month and go up or down from there. Other than the new dystonia, can you think of any other warning signs to watch out for? If there is, it might help others avoid developing a new dystonia. Thanks!

[park_bear in reply to JAS9]

I agree. I think it is best to start at a low dose and work up from there. As to other side effects, some people have stated it is a diuretic and lowers blood pressure, but I have not had that experience.

[chartist in reply to park_bear]

park_bear,

Several questions.

One, how were you able to increase your B-1 dose with the digestive issue it was causing at the lower dose, if I remember correctly? That would be useful information.

Two, since you increased your B-1 dose, do you think the dystonia could be a symptom of B-1 overdose? Would you consider stopping B-1 temporarily to find out if it is the cause.

Three, if you think it might be the celery seed extract (CSE), would you consider stopping it temporarily to find out or is this potential side effect of CSE considered permanent?

Art

[park_bear in reply to chartist]

The digestive issue that limited the vitamin B1 dose changed on its own without any intervention from me.

As far as you know is anyone ever reported dystonia due to vitamin B1?

I have taken several holidays from the celery seed extract. The dystonia that was obviously being caused by the celery seed extract did disappear at those times.

[chartist in reply to park_bear]

That's interesting on the B-1 dose adjustment upward to 4 grams day, had not heard that before. How long did it take for the change to occur after you started B-1?

I'm not positive because I never made a list, but the common things that people have said is that not only did their existing symptoms get worse at too high of a B-1 dose, but they also got new symptoms not previously seen before and as soon as they took a break and restarted at a lower dose, things improved again and the new symptoms stopped.

Good to know on the CSE, the dystonia is reversible with a dose adjustment or stopping.

Art

[park_bear in reply to chartist]

Not sure on the timing. Interesting point to consider.

[JAS9 in reply to park_bear]

I've increased my B1 to 4 grams/day, up from 2. This happened a few months ago when I reduced my L-dopa intake by 16%. It made it easier to do and my tolerance for B1 definitely increased.

I'm starting my CSE experiment tomorrow. I'll report back as soon as there's anything to report.

[JAS9 in reply to JAS9]

Small update. I took 2 capsules yesterday, one morning, one evening. I had a very good night's sleep, the best in several years. I hate to make an absolute connection with so little 'data', but there it is. I'm feeling good today, but that could be placebo effect or just the normal result of a good night (normal for other people that is).

I've decided to increase the dose to 3 capsules a day (9am, 3pm, 9pm). The 'suggested usage' on the bottle is 2/day and I wanted to push it just a bit. I'll keep posting updates as needed, otherwise, assume no real change from my previous post.

[park_bear in reply to JAS9]

If you find a dose that seems to be working, my advice is to not increase. In my experience the consequence of overdoing it, dystonia, may force you to back off more than might otherwise be necessary.

[JAS9 in reply to park_bear]

Thanks and I agree. If I understand correctly, you began by roughly matching the study by taking 3 capsules 3 times a day (3*3*75mg =675mg/day). I'm taking 1x3, so a third of that. I'm being very observant and if I see any other sign that it's helping (or causing dystonia) I'll cut back or (more likely) stop entirely for a few days.

Last night was above average for me, but not great. I am experiencing some upset in my stomach after taking the first capsule this morning, and for that reason alone I'm cutting back from 3/day to 2/day today.

[JAS9 in reply to JAS9]

I hadn't meant to update so often, but something might be happening faster than I'd expected. Still way to early to call this a pattern though.

Oct 5: 2 capsules/day..........followed by extremely good night's sleep

Oct 6: 3 capsules/day..........followed by above-average sleep (but some stomach upset)

Oct 7: 2 capsules/day.........followed by below-average sleep (maybe because I reduced from 3 to 2?)

Oct 8: 3 capsules/day..........followed by extremely good night's sleep

I haven't noticed much else, other than more energy, which could just be the result of getting enough sleep. Also, I am typing better this morning. I'm planning on sticking with 3/day for now but might reduce that depending on what happens.

[JAS9 in reply to JAS9]

Starting my 2nd week at 2-3/day, I continue to enjoy much better sleep. There might also be some improvement in energy and length/severity of my "off" times. I had been running out of "juice" an hour before my next dose, probably due to my reduction of my L-dopa meds a few months ago, but over the past week that's improved to the point that I now often (but not always) am surprised when my meds timer goes off. I hope that continues to improve.

I'm sticking with 3/day for now.

[JAS9 in reply to JAS9]

Just using this to document my experience with 3nB (CSE).

Continuing on with 3/day. Although I continue to have good or even great sleep, I've been experiencing somewhat stronger than usual tremors. I almost decided to stop the 3nB (CSE) to see if that was causing it, but decided that colder weather and a cold with congestion could be the reason my tremors were stronger. Yesterday the weather warmed up and my cold got better and so did the tremors. We've all experienced this; multiple factors make it hard to isolate the effects of something new.

I'm still not noticing much improvement in anything but sleep. In the last 3 days, the increased energy I reported earlier has gone away, also quite likely due to the factors above. Yesterday was better than the 2 days before. I'll keep posting as needed.

[JAS9 in reply to JAS9]

After 3 weeks on 3/day=225mg vs 600mg (the dose of the study), I'm still sleeping well with minor exceptions. I'd recommend this lighter dose to PwP to improve their sleep at least. I'm still experiencing somewhat improved "off" times and some minor improvements in motor skills, but still nothing that I can't attribute to improved sleep and/or placebo effect.

I am increasing my dose slowly, going to 4/day for a week (300mg/day). Depending on results I may increase further, or pull back if I experience any dystonia.

[JAS9 in reply to JAS9]

After 5 days of taking 4/day (and 3 weeks taking 3/day before that), I finally have something that I think is worth reporting.

I continue to sleep well, and I'm also:

1. experiencing fewer and shorter 'off' times, making them much easier and less painful. Before beginning this test I was having 1 hour 'offs' regularly and they were getting pretty bad. Now I'm often forgetting to take my meds on time because I don't feel it coming and often it never does come before I take my next dose. Very nice!

2. I can walk more normally and for longer distances. Before I reduced my L-dopa medicine (Rytary) a few months ago, I was slightly overdosed and it felt almost the same as this does (but also different; overdosing made me almost giddy sometimes, while this feels more stable with no dyskinesia or dystonia *yet*).

3. More manual dexterity. I haven't been able to type this well in quite a while. Brushing my teeth has gone from very difficult to not-so-bad.

So now I'm wondering if the 3nB is doing something to increase the dopamine in my brain? If so is there any advantage to this as opposed to just taking more Rytary? Or is it doing something better for me somehow? Going back to the paper on the study, and it seems to be saying that the mitochondria are being protected, etc. so maybe it is fundamentally different?

Another related question is: should I reduce it and see what happens? I'm tempted to reduce it just to see if these benefits go away. I can probably get back to this point fairly easily. Or should I stay at 4/day and try to reduce my L-dopa instead? Opinions?

[park_bear in reply to JAS9]

There is quite a bit of recent research on 3nb. What I saw merely said it was an antioxidant, but I have not looked at everything. It has to be doing something more than just that, but what that is, is unclear.

Here is a Google scholar search on Parkinson's and butylphthalide:

scholar.google.com/scholar?...

As to dosing, I would suggest backing off just a little bit, to three doses per day, and see if you maintain the improvement. If you are able to maintain the improvement for some weeks, I would iterate backing off until you find the minimum dosage that sustains the improvement. It was a real disappointment to me to be forced off of it due to dystonia, and I would not like to see that happen to anyone else.

[JAS9 in reply to park_bear]

Thanks, PB. I'm doing a lot of reading. I'm going to cut back to 3 for a week just to see what happens.

[alexask in reply to JAS9]

Great to see you are having good results with this. I think it is powerful stuff though so even 3 a week may be the right dosage. I see benefit in my face, but am only taking about 1-2 a week as I think it might exacerbate my flank pain (although that is much more likely to be the excessive amount of junk food I have been eating).

[betil1]

Park bear, thank you for that. Very useful information.

[park_bear]

Update 10/20/2019

At this point in time even a very small quantity of celery seed extract causes me dystonia. By small quantity I mean one third of one capsule. The benefit I was receiving has dissipated. For those who are not using this I recommend looking elsewhere. For those who are using this and receiving benefit I recommend using the smallest possible dosage.

[JAS9 in reply to park_bear]

Thanks again for the warning. I will continue to be cautious.

[KERRINGTON]

How about trying CSE 1/3 capsule once every 5 days, or something like that. Your predicament reminds me of mine with B1. Too much wreaks havoc, but just a bit, peppered with frequent breaks seems to be working. (began HDT 18 mos ago 4 gms, now 125 mg about 4 times week)

[park_bear in reply to KERRINGTON]

This is a reasonable suggestion and I may yet try something like this. Another approach would be to reduce the dose even further. At the moment what feels best is to take a break from this and focus on improving my Qigong practice.

[chartist in reply to KERRINGTON]

KERRINGTON,

Regarding the B-1, what happens if you go down to 50 or 75 mg per day?

Art

[KERRINGTON in reply to chartist]

Do you mean what do I think would happen if I consistently took 50 - 75 mg of B1 per day ? Right now I'm on 125 mg a day, but just took 250 mg because my gait, and balance were getting 'sloppy'. If those areas re fine tomorrow, then I'll skip Sunday( my day off from supplements, yea !) and resume Monday at 125mg, or.... back to 250mg if skipping tomorrow messes up my gait, balance, and, or rigidity.

[chartist in reply to KERRINGTON]

Perhaps I misunderstood what you are saying. I thought you were good at 125 mg day, but you have to skip days in order to maintain the good. That suggests that 125 mg is too much if you have to keep skipping days at that dose in order to maintain a good response, so I was wondering about a lesser dosage such as 100 mg or 75 mg /day after you take a B-1 break, so you don't have to keep skipping doses to maintain the good response?

Art

[KERRINGTON in reply to chartist]

I haven't replied till now because I continue to dance around my HDT dose. At 125mg 2x daily (250), I'm able to stand, walk, but maintain all PD symptoms. When I upped to 250mg 2x daily (500) I felt almost normal with few PD symptoms, I could do almost anything ! That lasted 2 days. On the morning of the third day I took 250 mg, then proceeded to unravel. I'm now on a HDT mini vacation....once again.

[chartist in reply to KERRINGTON]

So it sounds like 250 mg/ day is too low and 500mg/day is too high because you get the initial good response at 500 mg/day, but it only lasts two days and you are od'd.

That is a fairly narrow spread and you know you are a responder, so what will you choose as your next dose test? It seems that at 250 mg/day you are just barely seeing the slightest of improvement, so perhaps a slight adjustment to that dose will help. In any case, you know you are very close now!

Good luck!

Art

[KERRINGTON in reply to chartist]

Actually, I am going to try for 500mg every other day first !