Saw my neuro today... I'v been taking c/l and requip. Doc said with the amount of c/l I'm currently on 250mg 6 times a day and only getting 60-90 min of relief and my age (57) I would be the perfect candidate for DBS surgery which might grant me 10-15 years of a better quality of life. I asked if he could increase the c/l amount but that is something he does not want to do. I asked him if i could try extended release c/l, "sure we can try that, but I must say that I don't think that will work either", real positive guy.
Does anyone have any med suggestions? DBS is out for me...
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Are you saying that you are going to go from 250 mg IR x 6 times a day to 200 mg ER x 6 times a day?
If so, that is quite a significant reduction in levodopa dose!
250 mg IR x 6 = 1500 mg (IR)
vs
200 mg ER * (0.7 bio-availability) x 6 = 840 mg (IR equivalent) (a 44% reduction in daily levodopa dose!)
Is this what your doctor explained (i.e. that he intended to greatly reduce your daily levodopa dose)? If not, I highly recommend that you discuss it with him further...
srry, i made a mistake right now im taking.. 250mg 5 times daily, yes and i understood it that he was lowering the dose, i will call him anyway...thank you
Only problem with extended release is you have be careful of your protein intake. I would try short acting during the day and the extended relief at bedtime.
yes i have been through a lot of re-adjusts with protein, very sensitive to it, some are not, but I do not eat breakfast, never have since i was a kid, have lunch thats under 5 grams of protein and a supper thats under 10grams, ive been eating this way for 2 months and have enough energy to ride the stationary bike 20 min a day and walk the track a half mile a day at the local HS, also curl 35lbs dumb bells each morning 2-3 sets of 12
Definitely try b1 Thiamine hcl. It has to be the hcl because mononitrate doesn’t work long term. I purchase mine from Vitacost.com. I’ve never found it OTC. Amazon has Solgar brand. Theirs is a large pill that is difficult to swallow. Vitacost brand is a capsule that is much easier to swallow. You will still need your c/l. You may want to check out Facebook group Parkinson’s Thiamine hcl. It is dedicated to HDT. I have parkinsonism as opposed to Parkinson’s. All my symptoms have either disappeared or been greatly reduced. I take 1.5 grams twice a day for a daily total of 3 grams (3,000 mg). This has given me my life back. This is not always effective against tremors. Most people do see a reduction. You will have to ask Roy Propsner to join the Facebook group. He is the administrator. You can tell him I invited you, Margie Pyle. Also the Thiamine hcl is known to stop the progression of PD. Good luck.
mannp I dont know what to say! but only show my gratitude for the masses of information I have found through all the big hearted people here on HU forums in the last 18 hours, astounding......thank you 8)
mannp one more quick question 8) the B1 HCL seems I cannot find a link on vita-cost for the HCL formulation, can you post-link to were that product is located, and why does it have to be "HCL"?
HCL is water soluble. It does not build up in your body. Any excess is eliminated in your urine. Rarely are there side effects. Other Thiamine is not eliminated and can build up and become dangerous.
On Vitacost get b1 Thiamine 500mg capsules. On the label above and to the right of the words Vitamin B1 in smaller letters it says As Thiamine HCI (hci and hcl are the same chemical). Different manufacturers use the two symbols interchangeably. I was going to post a picture of my bottle but I don’t see a way to attach it. I’m not very computer savvy and I use my iPhone for everything. Sorry.
I do suggest you check out the Facebook group for Parkinson’s Thiamine hcl. It is very informative. Many of your questions are answered there. Read the tabs at the top.
Also Vitacost only ships to the United States. I hope you are located here. Otherwise it is Amazon or possibly Solgar direct if they sell direct to the consumer
Well I certainly hope you do. Cause properly stacked supplements can lead to reduce LDopa intake.
The toolbox your neurologist has to play with is extremely limited. The ‘gold standard’ - cardidopa/levodopa combo - goes back to the ‘70’s and every thing after that has just been a variation on the same theme.
It is time to explore the world of supplements inclusive of amino-acid therapy. 📌
mannp, I did pick up a bottle of 100mg yesterday to hold me off until i can order HCL for vita-cost,,, took a 100mg cap before bed last night, and i kid you not, ive had massive cramps in left foot every night, but last night i didn't have any cramps!!, work of God? does the HU forum have a direct link to Gods database?... I'm freaking out in a good way!!!!
I felt the same way. I had asked for prayers from my church. I really felt God’s answer sent me to the Facebook group. There were only a couple hundred members at that time. I read all the posts to educate myself. I ordered the b1 and haven’t looked back. I haven’t fallen since starting the b1. I started at 2 grams daily. I feel so blessed that prayers led me to this treatment. I now try to share my knowledge and experience with everyone I come in contact with that has Parkinson’s. I want all parkies to feel this joy that you, myself and a few thousand others have felt. HDT has given me my life back. I do hope God is working through me to help others. This is not a cure, but a wonderful treatment along with c/l that will sustain us until a cure is found. Someone suggested you start at 500mg twice a day. Remember this is High Dose Thiamine (HDT). Dr. Constantini recommends starting at 4grams. It has been discovered that is great for the Italians, but Anglo Saxons need a lower starting dose. I always recommend starting at 1gram (1000mg) twice a day for a total of 2 grams. If you have a reduction in symptoms for a while but then return you are taking too much. Stop for several days and start back at half of what you were talking. If that is tolerated gradually increase until symptoms start to increase. Go back to the previous dose prior to the most recent increase. That is your ideal dose. It is trial and error. Don’t add anything new including supplements during this time. Wait until you find your idea dose before adding anything. If there are any complications you won’t know what the culprit is if you added anything or increased the dose. Add things one at a time.
Congratulations on a full night of sleep.
Your constipation will be gone, your sense of smell may improve, cramps may go away, your writing may improve. You have so much to look forward to. I can almost rollover in bed. I couldn’t even come close previously. I use a short bed rail that I grab to move around in my bed. Again good luck and God Bless you.
Constipation went immediately walking better and arms wing coming back after 3 months. Not a miracle immediately for all but persist and things will get better
Unfortunately, during instances like these, you are forced to question as to whose best interests they have in mind. Are they evangelizing DBS because it is a money maker for them, or are they promoting it because they don’t have to work hard anymore to correctly and properly calibrate your medication and dosage.
Rytary really works well, but it takes a long time to calibrate. Ask yourself if your doctor will have that kind of patience to help you or whether he will be dismissive of you. Are you in a place where you can get a second opinion? Maybe even change doctors?
Go to a movement disorders specialist /MDS. They are best qualified to assess Parkinson’s patients.
My MDS released me because I was doing so much better by being on the b1 Thiamine hcl. I am seeing my neurologist again. I do take other supplements and Ingrezza, which is for my unexplainable Chorea movements. B1 is the major difference.
I agree with park-bear, HDT. Some members who have added B-1 to their C/L have been able to actually lower their C/L dose and it is Dr. Costantini's experience that in his patients who added B-1 to their C/L, none ever had to increase their C/L with the passage of time. This is the exact opposite of what usually happens with C/L dosing over time. Usually the dose needs to be increased until eventually a max dose is no longer effective enough. Oh and of course the increased potential for C/L side effects as the dose goes upward.
" it is Dr. Costantini's experience that in his patients who added B-1 to their C/L, none ever had to increase their C/L with the passage of time"
I have some difficulty believing that this is true, or that it remains true.
Are there not people on this forum that have described disease progression whilst on HDT? Surely those people either a) up their CL dose or b) experience worsening symptoms?
You will have to pose that question to the members as I do not have PD or use B-1. That is what Dr. Costantini has conveyed to the forum while he was able.
Yes, I have experienced progression of symptoms while taking B1. I continue to take it as I believe it is still helpful. I have not increased my c/l. Also, I started B1 after 9 years of PD. I believe Dr. C's words apply to the patients he has treated himself, most of them beginning HDT in the early stages.
I was diagnosed 3.5 years ago, would this be in the realm of early stage for me? doc told me yesterday that I was progressing much faster than he expected ...thats when he threw me the DBS suggestion..
Nope, HDT stops progression of PD. I’ve only been on it since November. Roy who was treated by Dr. Constantini and takes HDT has not increased c/l in 7 or 8 years. Roy needs to speak for himself. He does post on HU at times.
Roy recently posted that his symptoms had "back slid". Hardcore HDT believers will just say he is on the wrong dose, of course.
Which is what everyone hears when they say it isn't working. "you're doing it wrong". It's a bit like telling John pepper that FW isn't having the supposed magical effect. "You're doing it wrong. You need to walk for 30 more seconds on Thursdays" etc.
A lot of people have relatively stable PD symptoms for years taking solely CL. I don't know that we really know enough about HDT to conclude that it "stops progression".
My husband has had PD since 1995, this is when he was diagnosed but as like everyone else he probably had it for years before that. He is now 67. B1 has been a game changer for him. CL had stopped working altogether for him after many good years just as everyone knows it will eventually fail. When it does, it is scary. My husband could not be left alone because he would jitter backwards and fall. He would freeze, became thin and totally lost his personality. B1 and Atremoplus have been game changers.
We are also reducing his B1 a tiny speck because after 18months it appears he is having too much now.
We would never go back to pre B1...yikes even NZ leading specialist said there was nothing more for him! Now he is leading a great life, not perfect but he is keen to start playing golf again. His balance is restored. Just wanting to play golf again is so cool.
Thiamine seems to have produced wonderful results for your husband and yet it does nothing for other people. You are very fortunate. I am new to the concept of using supplements and have no idea what to expect. Can anyone tell me from their experience and knowledge whether the variability of the chemistry of our bodies is such that a particular supplement would work wonders with one person and have no effect on dozens of others?
I think some people have no results because they have not found their correct dose or they have other health issues as well as Parkinsons that have not been addressed. My husband is otherwise very healthy. It is very obvious to us his improvement with B1 because he is now balanced and we do not constantly have to catch him or steady him or hold his arm if he is walking with us. Simple for us to notice a difference.
A very major problem with HDT / B-1 is that Dr. Costantini is no longer available to help people find their specific dose and with the effective dose range of 25/50 mg to 4,000 mg per day on this forum, finding the optimal dose can be very difficult, time consuming and frustrating, which some forum members are not able to get past. Add in the fact that if you take too much B-1, your symptoms can worsen and you can even get new symptoms that you have not previously had and that can be scary! These new worsened symptoms go away once the dose is reduced, but they can still be scary all the same. Further still, some members have not found any benefit at all until 6 or 7 months of supplementing with B-1 and then the benefits seem to start to stream in. Most people are not likely to continue taking a supplement if no results are seen in the first month and consequently quit taking B-1 even though they may have been a B-1 responder after more time of taking it. The lucky ones are the ones who notice benefits from the very first day of supplementing or injecting B-1. Others report benefit within the first week or two.
For those who find benefit early on within the first month, it is very easy to continue taking B-1, but not so much for those who don't see benefit in that first month.
My thought is that if people want to test HDT/B-1, it would be worthwhile to be willing to commit to a three month minimum of testing it. Short of that and you may turn out to be a responder, but did not give it enough time to find out. I say 3 months, because the majority of B-1 testers on this forum have reported benefit within three months of beginning testing of B-1.
Not everyone will respond to B-1. It is just like any PD medication, some people respond well to a specific medication while others do not. It is all trial and error, but considering the benefits that members have reported on this forum and the potential to significantly slow or halt disease progression as Dr. Costantini has reported from his clinical experience with thousands of patients over 7 years, it seems like it is a test worth giving a few months effort to see if it will work for you. Considering the nature of PD, it seems like an effort worth making! Nobody is making a ton of money off of this protocol or trying to use it for some form of personal gain. It is just a personal choice for anyone who wants to try it. Here is a link to a list of symptom improvements that forum members have reported as part of their HDT/B-1 experience :
Great explanation. You are a wonderful explainer especially your understanding of PD with no actual experience with it. Do you have a loved one with PD? What is your connection with PD. I hope you don’t mind my asking? I’m curious by nature. Thanks Art
I have discussed this previously on this forum, but it would be impossible to find that post now.
I have several friends and two acquaintances with PD and I was researching on their behalf starting about 4 years or so ago. I ended up on this forum about three years or so ago because I found a post here when I was searching, that I had posted on another forum regarding Dr. Costantini and his HDT protocol and someone had copied and pasted it to this forum. I stayed because of the broad spectrum of information that can be found here and because the members here are very knowledgeable and willing to share their experiences which is very useful and helpful when you are researching. This is certainly one of the best forums I have ever been on and I have been on many!
I contacted one research group in California who was doing very similar HDT research as Dr. Costantini and achieving very similar results as his group in Viterbo, Italy. Unfortunately the lead researcher from the California group passed away and that was the end of their research. Failing to be able to get information from them, I contacted Dr. Costantini via email before I was aware that HU even existed and he responded back right away. We stayed in contact from that point up until his stroke and that is how I was able to gather all of the information that he shared with this forum at the following link :
Dr. Costantini is easily the finest doctor I have ever known and his patients were one of his highest priorities as witnessed by how he responded to and treated all of his email patients for free and shared his information freely with our forum! The world could use many more people like him!
Roy has recently returned to his original dose of b1 and is doing okay as far as I know. I haven’t been able to keep up with him, as I had total knee replacement surgery last week.
There is the other thing that Dr. Costantini always felt that C/L and HDT had synergy together when both doses were optimized to the individual patient.
The effective dose is very individual specific. On this forum, the effective dose range has been shown to be as low as 25/50 mg up to 4,000 mg total per day.
Yes, I think Dr. Costantini said that a worsening of symptoms was an indication that the correct dose had been exceeded during the testing period and a break was needed to let the thiamine level drift downward before restarting at a lower dose.
is there any specific type of B1 i should be looking to purchase or just any B1 I find at my local store? and thank you so much for everyones input and time ...
PS... the only thing i found for B1 were i live was 100mg, ill be going to vitacost.com or amazon to find the large dose pills that they sell
The information you are looking for regarding everything HDT is in the link further up in this post. It includes links to suppliers of thiamine hcl in powder, pill and capsules including 100 mg capsules for fine tuning dose if needed.
You can’t find the Thiamine hcl in stores. I have only found it online. Please make sure it is hcl or hci. This is important. No other thiamine works. No hdl, I’ve never heard of that. HCL or HCI only. If not stated read the back of the label. Sometimes it is located on the back. It has to say hci or hcl somewhere or it’s not the correct product.
I was offered it two years ago like you it wasn't for me I felt they were clutching at straws so I upped my dose of sinemet stopped the off periods now I get mild dyskinesia rather that than a bloody chip in my head maybe one day but not yet by the way I'm 58 been diagnosed 8 years in feb
Same here Jeff with my husband (65) but he was diagnosed 14 years ago. He recently switched to extended release sinemet which he takes 3X per day plus 1 x Madopar upon awakening. He also takes loads of supplements including Vit B1 as well as grapefruit juice. Unfortunately he's in a lot of pain (caused by spinal stenosis) so he's unable to exercise. Also his diet is not very good either (very fond of chocolate, biscuits & peanuts!)
He's presently being considered for the focused ultrasound trial being run by Imperial College London.
Think the trial is now closed to new applicants but you could try looking on google. It's being run by Imperial College London in conglomeration with St Mary's Hospital.
Dare I say that there is possibly a non-medical solution that is available. I am not going to upset the medical profession by telling you what it is, but if you view my website - www,reverseparkinsons.net you can contact me and I will try to help you, at not cost!
Can I ask why you are unwilling to contemplate DBS? It seems that the Doctor gave you a positive suggestion (DBS will add a decade of better quality life seems pretty positive to me), but when you don't like it (for reasons that are not yet explained to us), you've suggested another, and upon receiving his honest response to that, you accuse him of being negative. DBS is actually a scientifically proven treatment for PD symptoms.
Will never consider DBS, minimal success rate, no guarantees, but you do get wires and metal pins housing in your skull, wires under skin of your neck and chest, and battery packs and refills...no fkkin way
Minimal success rate? This is inconsistent with the published research.
"Telephone surveys were completed by 40 surviving patients (mean age 55.1 ± 6.4 years, 72.5% male, 95% subthalamic nucleus DBS, mean follow-up 13.0 ± 1.7 years). Tremor responded best to DBS (72.5% of patients improved), while other motor symptoms remained stable. Ability to conduct activities of daily living (ADLs) remained stable (dressing, 78% of patients; running errands, 52.5% of patients) or worsened (preparing meals, 50% of patients). Patient satisfaction, however, remained high (92.5% happy with DBS, 95% would recommend DBS, and 75% felt it provided symptom control)"
Survivorship bias. I have seen reports of DBS having to be removed due to infection. The above language tells me such cases were unlikely to have been included in the survey.
Is far too easy to play tricks in such kinds of surveys. One of the most egregious examples are statin trials that feature a washout period wherein patients experiencing adverse effects are excluded from the trial and not counted as having said adverse effects.
You will also likely have a nightmare at airports (screening areas) and MRI problems if you need a MRI scan - ever.
I am amazed at how much negative experiences and information is left out about any treatment.
The biggest Achilles Heel that I see with DBS is the dependence on a remote control!! Imagine what would happen to you if you have turned off the DBS stimulator and lost your remote. Who here has never lost a TV remote?
Agree with you totally. DBS should be the last resort if ever. It is fraught with danger at this time. However, hope is on the way. My doctor says that they are incorporating AI ( artificial intelligence) and ML (machine learning) to DBS. It is likely that the future DBS electrodes will automatically self program to sleep and wake up as and when needed and learn from patterns and experiences that are unique to you.
I am also 55, about the same age as you. I think we can wait.....
There is no risk factor with walking but a very real risk factor with DBS. Perhaps you have never met any of those patients who had DBS that caused serious side effects!
John... that is what i told my doc yesterday, he smirked, i said doc when your on an operating table for 6 hours for brain surgery thats a very serious procedure, shit any brain surgery is very dangerous and some of the horror stories i read on DBS are down right scary as hell.....
I was taking 12- 250 a day before I had the DBS sugery. I think it depends on each person how much you can take. However the MDS ,at Baylor College of Medicine, said he has never known anyone to take that many. After the DBS I am stable at 9- 100's a day. May I ask why you are resistant to the surgery.
I just feel being diagnosed only 3 years ago and trying only 3 PD meds during that 3 years, with one putting me in the hospital with severe side effects, that my doctor should explore a bit more with different meds/doses and I also want to educate myself more on the whole supplements avenue, like HDT and others that have given a lot of PD patients success without having to take a drill, some wires and a battery pack and make an early Halloween prop out of their skull, not to mention making train tracks under your skin with electrical wires.
My current off times average around 70 min X 5 doses a day that is roughly 6 hrs of being uncomfortable each day and I know a lot of people suffer a lot more than that and DBS is the only way to save their sanity or even life. I'm not at that cross road yet and I strongly feel the Doctor was pushing the DBS surgery yesterday, to lazy to explore or support other med/supplement experimentation, to them we are just fckin lab rats that can generate some meaty DBS profits.... anyway, I'm starting on c/l ER today that was my suggestion, doctor was not planning on writing any new scripts yesterday that was evident, almost said no to the ER, but guess he took pity on me...... Jesus Christ is my strength and I think I can take a little more than six hours of off time, the Lord will let me know if and when its time to transform my skull into a monstrosity that only a tin man could appreciate ...
God Bless all of you for your input and caring ways, I truly do respect your opinions.....
Amen to feeling like a lab rat!! I wish I had explored the DBS a little longer but felt I had no choice. Anyway it's better than taking 12- 25/250 a day. I really don't think about it much until I have to recharge the damn thing. Wish I had got the regular battery instead of the rechargeable one.
Buck I wish you all the luck in the world with your DBS set-up...... but nobody should make you feel like you have no other choice like my doc made me feel yesterday, like i had no choice but DBS!!! bullshit!
Don't get me wrong I don't regret having DBS just wish I'd have been more informed before hand. Also sometimes, as in my case, it takes anywhere from 6 months to 18 months to get you to your optimal level. And since they are doing so many of them it seems there is not enough doctors to service them. Also sometimes they don't help walking and speech that much.
Buck its all about the $$$$, how many can we get done this week fellas! when they do not even have enough technicians to support and tweek the DBS system to optimal efficiency, mean time the patient still has to suffer with some of the same symptoms they had before surgery. Unbelievable !
My MDS has suggested DBS. I have lots of research to do. Will be attending some DBS support groups in my area. If I were not my spouse's only caregiver, it would be an easier decision to make. It sounds like DBS is being recommended in earlier stages of PD in an effort to "reset the clock".
To be honest, i dont know what to think anymore about this DBS, been doing none stop research all over the net, please take the time to read as much as possible the good as well as the bad on DBS there are some real horror stories out there..
One drawback to DBS seems to be a substantially increased risk of falling compared to non-DBS PWPs according to the following study that showed 42% for the DBS group compared to 16% in the non-DBS group or greater than 2 1/2 times :
Your doctor 'smirked' when you mentioned fearful side effects from DBS?! How can you trust a doctor who doesn't listen to you and take your concerns seriously? #1, I'd look for a new doc. On the extended release C/L vs. immediate release, my neurologist (also a movement disorder specialist) does not like the extended release for daytime use. He says it's regular C/L with a hard coating on it that dissolves and gives uneven med release. Sounds like with off times you don't need uneven levodopa delivery.
Rytary is expensive but (in the US, don't know about elsewhere) you can get help from the manufacturer to pay for the drug, I think max $20 or $25 per month. It does take months to adjust dosages and you do need a doc who knows what he/she is doing. The first doc I tried Rytary with, I call the Great Rytary Fail. The second time around, with my current doc, patience and much discussion with him, I hit a good med stride.
I am all for supplements and complementary therapies--I use many myself--but some of us need medication. I have found acupuncture helpful for symptom relief. I know people who've had DBS and it does help some reduce medication. It doesn't work well for nonmotor symptoms and some potential side effects are soft speech and difficulty swallowing. People considering DBS need to have cognitive testing as DBS can cause cognitive decline and those exhibiting any are usually not good candidates. If your doctor hasn't discussed all of this, get a new doctor!!
I had posted this about 3 months ago and feel it is relevant to your post. Ask your doc about Nuprin and Govovri . Are you seeing a neurologist who specializes in movement disorders? We have found it made all the difference in the world. We go to The Mohammed Ali Center in Phx AZ
My husband ( 71yrs, PD diagnosed 9 years ago) has been taking Gocovri for almost 6 months. He has very little dyskinesia. It was prescribed to prolong the “on- time” of carba dopa leva dopa. It has been remarkable. He has no freezing , walks at a brisk pace , there is less off - time. He has more energy, no longer apathetic. He has been very pleased with his results.
Definitely worth a try !
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ladyaudree
ladyaudreeFinn3
3 months ago
Did he suffer from dyskinesia before?
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Jumex2017
Jumex2017Finn3
3 months ago
Are you saying that he had freezing and dyskinesia before he took the drug ? And all this improved? Was the results almost immediate?
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Finn3
Finn3Jumex2017
3 months ago
Yes, he had freezing and shuffling especially at night and early morning. We noticed results in about 1 week. It was truly amazing . He even talks more! His dyskinesia is really very slight, so the improvement was not really noticeable.
Again, he was given this because his meds were wearing off in 2 hours, not for dyskinesia. He is also using a NUPRO patch once a day along w CL regimen. All together it’s working.
Our friends cannot believe the difference in both his energy, his walking and overall demeanor. I have to concur. He actually looks forward to doing things again. I hope it works as well for you!
This has a range of vitamins, minerals and other compounds that have been found to be helpful in PD all in one product. It made a huge difference to how my my husband was feeling in 3 days. ( He is early stage but suffered most from anxiety, depression). It may help you if you are deficient in other nutrients. Ring and talk to their product specialists.
LA thank you so much for the info, will look into it asap. And today I got serious with exercise, ive neglected it for the last time, joined my local gym today...
Like you I'm 57 diagnosed 3,5 years ago. I take ER modopar 125 x 2 a day, approx 175 mg B1 and tbsp mannitol a day.
I feel better than hv felt in last 5 years, B1 and modopar work beautifully together. No eating restrictions with modopar i often take 2nd pill with lunch.
I now have no cramps, trigger finger, stiff muscles, poker face, apathy, lack of sense of smell. I can wash my hair, dress properly, walk for miles, have returned to running. I have no downtime. Iam even able to forget i have PD.
You should study the info here about B1 n how keeps the cl down. You n i are young and need to regulate how much cl we take.
Its a long race not a sprint.
Good luck
I know that you have gotten a ton of responses to your question that urge you to try Thiamine HCI.
Word of caution: it does increase blood pressure for some people, sometimes significantly. Unfortunately, I am one of them. Please measure your blood pressure when taking the Thiamine.
NOTE TO ROYPROP & CHARTIST/EASILLY/SAFETYFIRST/ART: please include this disclaimer if you can on the web presences that you maintain. Art: isn’t the unexpected and undocumented side effects that you were worried about that caused you to close your EASILLY ACCOUNT & come back as SAFETYFIRST & now as CHARTIST?
Thank you very much Mala for the heads up, I did not come across that warning about BP anywhere... and I already have BP problems most of my life, I got all ramped up for nothing and the B1 order is coming in tomorrow from vitacost, 8(
Unfortunately, that’s what you get from a community of laypeople like us. Which is why doctors get paid for their knowledge that is obtained through at least 12 years of post secondary training. MDS practitioners spend at least another 4 years of training as a fellow.
I know that the hope is that the curse which we have been “blessed” with, will go away and we will be free at last. I am not going to hold my breath for a miracle!
I do get high blood pressure from thiamine HCL as well as the fat soluble B1 - it's called benfotiamine. It goes up into the range of 212 / 112. This time, so far I have not had it. I have stopped thiamine HCL few times and restarted it again after a week or two weeks time or even more. So I definitely would not be scared of starting to take it. If you do get high blood pressure it's probably going to take a while of taking B1 before it shows up. And as I said it goes down again when you stop. And now that you have been warned you can keep an eye on it. Mary
It has always been in the information pages (HDT FAQ PAGE) that I link to , but you would have to actually read it to know it. Obviously, Malyappan, you did not read it.
Many medications can do the same or worse and doctors do not always tell their patients that a specific medication can cause HBP in some people and instead choose to deal with it if it happens. I know this for a fact because I just had that very issue where a medication pushed my blood pressure up to stroke or heart attack range and the doctor did not tell me that it could happen. I only found out because I monitor my blood pressure everyday. Had that not been the case, I could easily have stroked out at a blood pressure of 225/ 130!
I've had crazy BP spikes for almost 40 years.... Monday BP at Neurologist 238/122 got home an hour later BP 149/80, saw my PCP next day BP 170/91, PCP has tried all different combos of BP meds over the years and nothing stabilizes it.
FKIT im going forward with the HDT if that doesn't kill me or land me in a nursing home the PD will.....
Why is DBS out for you.? I had the surgery and I am in my 12th year,maybe longer. The surgery was painless and I had no problems afterward. At least look into it. Talk to the surgeon, ask questions ..many people do not qualify for DBS, so you’re lucky.
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