PD with Peripheral neuropathy ? (not diabetic) Taking Sinemet with Gabapentin...

[Lyrics19]

These 2 drugs make me dizzy and spacy I can barely function as day goes on.Anyone out there have some advice? I'm at my wits end!!

[park_bear]

B6 deficiency is a possibility: healthunlocked.com/cure-par...

[Lyrics19]

Park_bear My posts aren't going thru so I'm trying againU said Magnesium is bad with Gabapentin ..I take Gab 3x a day in addition to 100/25 Sinemet 3x day.

I take Magnesium L Theronate daily due to taking sublingual 50 mg of B1 ..3x a week. Supposedly B1 needs the magnesium to work plus I take D3, fish oil, Lions Mane, E 100 mg, B complex, no B12 .. have high B12 count, Lexapro ( great for depression), at night to sleep I take 1mg Klonopin, 3mg of Melatonin, and .5 mg Requip for RLS ...thoughts??

[park_bear in reply to Lyrics19]

>"U said Magnesium is bad with Gabapentin " - Someone else said that. I have no idea.

>"100mg B6 " (from other comment)

Check the label on the B6 bottle. Does it say pyridoxine or P5P as the active ingredient?

Pyridoxine can be toxic and should be avoided. P5P should be okay but some have reported intolerance. I recommend you omit the B6 for a couple of weeks and see if it makes any difference in the neuropathy. If we can get an improvement in the neuropathy you may be able to get off of the Gabapentin.

Esperanto How long do you recommend to lay off the B6 to see any reduction in the neuropathy?

[Esperanto in reply to park_bear]

Given the long half-life of B6, it is likely to take between 2 and 4 months for it to decrease in the body, depending on the potential overdose, if applicable. Whether and when the neuropathy will reduce symptoms can take much longer. To obtain clarity on this, a B6 blood test is essential. It seems crucial to prioritize this control if it hasn't been done yet. The sooner the B6 balance is potentially restored, the greater the chance of minimizing damage, namely the degeneration of nerve pathways.

[Lyrics19 in reply to Esperanto]

I only took 1 pill a week because I had heard a while back it may be bad for PD

[Esperanto in reply to Lyrics19]

It may be the combination of the 100mg B6 + B complex....

Testing provides clarity!

[Lyrics19 in reply to park_bear]

Thank u It was the bad B6 it's now in the he trash

[park_bear in reply to Lyrics19]

Also check your B complex as to what kind of B6 and how much.

[Esperanto in reply to Lyrics19]

It's important to consider that after a period of B6 fasting, there may be a risk of developing a B6 deficiency, which can be just as risky for PD and PN (peripheral neuropathy) as an excess. In such cases, it may be necessary to supplement with B6 (P5P) in smaller amounts, depending on the test results. I recommend getting a B6 test today and repeating it in three months.

Additionally,, as park_bear said, pay attention to the amount and form of B6 in your B-complex supplement, as well as how long you have been taking it. At this stage, I would advise against continuing to take your current B-complex supplement. Instead, look for one without B6.

Please note that B6 is often combined with other minerals and nutrients in supplements, such as melatonin, magnesium, zinc, and omega-3 fatty acids.

[chartist]

You may find this of interest :

healthunlocked.com/cure-par...

Art

[Lyrics19 in reply to chartist]

Thank u The only thing on the list I d DON'T take is Berberine

[margaretmotley]

Could the dizziness be a function of low blood pressure? Not sure how Gabapentin might affect BP but our experience was that Sinemet exacerbated my Mom’s (PWP) low BP.

[Jeagar815 in reply to margaretmotley]

Nah. I’ve taken gabapentin with sinimet for anxiety issues. I’ve found that regular yoga, anything physically intense, dogs and anything that makes me happy are far better options than taking any available anti anxiety medication. The side effects are worse than my anxiety. Gabapentin made me sleep for 12-14 hours and so loopy when I was awake that I poured coffee instead of syrup on my pancakes. The carafes looked the same, but were two different sizes. I found myself telling myself not to confuse the two, but I got distracted and poured coffee on my pancakes because the coffee was closer. After that I refused to take gabapentin anymore. If you can reasonably not take anxiety medication I would get off of them or help a loved one find non medication solutions to get off of them.

[Esperanto in reply to Jeagar815]

Gabapentin turned out to be more harmful than helpful in my case. It is, of course, an anti-epileptic medication and not a cure for PN. While it may provide pain relief for some, it is best to avoid taking it if you don't truly need it.

[CaritaP]

understandingb6toxicity.com

Good advice, though I’m not able to follow their so called protocol fully ( high blood pressure, Parkinson). I like the idea of proper hydration, plus to lower the amount of b6 rich foods (tomatoes,bananas,chicken, chickpeas etc), however, to still get the RDA, in order not to become deficient, equally bad.

[Esperanto in reply to CaritaP]

As you already mentioned, the situation for PD is different due to the potential interaction with Carbidopa. However, it is still important to ensure adequate supplementation through your diet, and perhaps P5P, but most importantly, regularly test your B6 levels!

[Lyrics19 in reply to Esperanto]

Unfortunately the B comolex I just bought has 2.55 mg of B6 pyridoxine HCL Is that amount ok to take?

[park_bear in reply to Lyrics19]

That amount is small enough that it should not cause a problem. Turns out is very important to be also taking plenty of riboflavin, vitamin B2, if there's reason to suspect B6 toxicity. See details here: healthunlocked.com/cure-par...

[Esperanto in reply to Lyrics19]

Have you done the B6 test yet? It only provides you with valuable information before you change your supplementation!

[rebtar]

Do others have the experience of numb toes/feet when OFF but not when ON?

Is this also PN?

[Rscott]

I was taking Gabapentin along with Cymbalta for my neuropathy. I changed to Lyrica with the Cymbalta. I too was desperate. Thats the best I have found. Not perfect. Also hydration seems to help.

[Isthistheone]

Hi 19. My 2 cents. I read your bio, you're 66 years young, female, how long have you been on levodopa and when were you diagnosed. There are many knowledgeable people on HU. I don't know how doctors can keep up with all the variants of movement Disorders. Then toss in OTC supplements!! I doubt that the best neurologists can keep up. Your doctor knows your condition better than anyone. Question him/her until you understand. HU will eagerly give you ideas what to expect and what has worked for them. I asked how long you have been on levodopa? It can take years to find the right medication, dose and timing. All this time your health is changing. AND ALL OF THESE DRUGS HAVE UNPLEASANT SIDE EFFECTS!! PWP would rather keep their existing regimen, than try something new. I don't blame them at all.

Margaret Motley in her recent reply to you mentioned low blood pressure. There are many PD meds that'll lower your BP. I bring up this final remark - MAKE SURE YOU ARE DRINKING PLENTY OF WATER. YOU MAY BE THE CAUSE OF YOUR OWN DIZZINESS!!! It's a fact not drinking enough fluids daily is a major cause of feeling faint.

[Lyrics19 in reply to Isthistheone]

IsthistheoneI was diagnosed Nov 2022 after symptoms came on during a terrible bout of Covid but did not start Sinemet until finally seeing a movement disorders doctor in May 2023. I am only taking 2 - 25/100 pills a day unless I am going out in the evening. It still seems to work for me.Thank God!!

My PN and PD came on at the same time (Aug. 2022). I don't have low BP nor do I have Diabetes.

Sorry but I forgot to say that when I was diagnosed back in Nov 2022 I was originally prescribed Amitriptyline and Ropinirole for PD, PN, sleep and RLS. It helped with sleep and RLS but did nothing to help my PN or PD symptoms.

Moving on ..,.I went to a pain Dr. for my PN in June 2023. I was in agony and the numbness unbearable. I first took Cymbalta with no luck then Lyrica that actually seemed to work however I was always dizzy had brain fog and gained 20 lbs in a couple months.

So my Dr then switched me to Gabapentin. It actually works quite well but the 300mg does 3x a day put in in lala land and made me very dizzy and sometimes I felt like a zombie...

In the past 2 wks I cut back and am taking 200mg at 8am 1- 100mg at 4pm and 200 mg at 9pm . It doesn't work as well but I seem to be less dizzy and feel more normal with this dose. PN is very difficult to treat along with PD.I don't think the meds are compatible.

I take lots of supplements plus 50 mg of sublingual B1 4x a week. I drink lots of water and eat lots of fruit. Trying whatever I think will work at this juncture.

Sorry to be so long winded but I've got a lot going on.