How does Thiamine help POTS?

P

Peyt

Senior Member
Messages
679
Location
Southern California
Hi,
I have been taking small amounts of Thiamine for about 10 days now and I noticed from the first day that I slept better. I can only take about 25 mg though because anything more will give me a headache.
But when I take that 25mg at night it will help me sleep better and I feel less agitation the next day... However, I have not seen much difference in slowing down my speeding heart rate.. It's still around 90 while sitting and 110 when standing after 10 min.

But now that I can see some improvements with Thiamine I would love some education on what pathways does it effect to help people with POTS with sleep and calmness?
 
P

Peyt

Senior Member
Messages
679
Location
Southern California
Eastman said:
There was a thread POTS - symptom of nutrient deficiencies as well as an earlier thread POTS and thiamine - possible remedy which discussed the link between thiamine and POTS.

Also, this article by Dr Derrick Lonsdale Post Gardasil POTS and Thiamine Deficiency.
Click to expand...
After reading Dr. Lonsdale's article, I can totally see why Thiamine gets rid of my everyday agitations and stabilizes my mood because it effects glucose metabolism. This answers my question. Thanks

But Thiamine (at least up to now) has not done much for my racing heart. My heart is still racing.. This morning I was at 98 sitting and 110 standing... not exactly POTS standards but uncomfortable nevertheless .
 
bertiedog

bertiedog

Senior Member
Messages
1,745
Location
South East England, UK
Peyt said:
But Thiamine (at least up to now) has not done much for my racing heart. My heart is still racing.
Click to expand...

This was something I regularly suffered from many years ago and it was horrible and caused excess adrenaline in me. However there was an easy answer, 10 mg Propananol taken once of twice daily. There have been times when I have needed to double the dose but these days 10 mg is fine.

I have had no side effects from this and have been taking it for nearly 20 years.

Pam
 
P

Peyt

Senior Member
Messages
679
Location
Southern California
bertiedog said:
This was something I regularly suffered from many years ago and it was horrible and caused excess adrenaline in me. However there was an easy answer, 10 mg Propananol taken once of twice daily. There have been times when I have needed to double the dose but these days 10 mg is fine.

I have had no side effects from this and have been taking it for nearly 20 years.

Pam
Click to expand...
Thanks Pam. Propananol is a beta blocker correct?
I do so well with natural beta blockers such as Chamomile and L-Arginine , only if I did not have such terrible side effects to the two. I guess it might be a good idea to try something synthetic such as Propananol if it does not have side effects like the natural stuff did for me.
 
Learner1

Learner1

Senior Member
Messages
6,311
Location
Pacific Northwest
Peyt said:
I don't think so. I can check the tests that my doctors have ran in the past, what would be on the test?
Click to expand...
You might also want to look at the other tests on this list
Jesse2233 said:
Posting this in the hopes that it helps someone better determine an autoimmune etiology and move down an appropriate path of treatment (e.g. anti-inflammatories / immunomodulators / immunosuppressants).

At very least these labs may point to a verifiable disease process when other labs are normal.

Caveat: these autoantibodies can show up in healthy people, and any treatment based on them should be assessed in conjunction with one's clinical picture, other labs, and a healthcare professional.

I am in contact with a researcher / immunologist in Sweden who is working on a new rhodopsin antibody assay for POTS. It is not yet available for public use, but I will update when it is.

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

The way I get doctors (in the US) to test for these is:
  1. Print out the lab order w/ appropriate test codes

  2. Take the lab order to a GP and say "I have a post-infectious autoimmune condition. My specialist would like to test for these antibodies" (all of which are true).

  3. I've not had any issues doing this with two different GPs. However, if this fails, one can consult a Integrative Medicine doctor or a Naturopath.
-------------------------
Note: The Quest and Lab Corp autoantibody tests need to be searched for individually


Cyrex Array 5 - Multiple Autoimmune Reactivity Screen
  • Parietal Cell + ATPase antibodies
  • Intrinsic Factor antibodies
  • ASCA + ANCA antibodies
  • Tropomyosin antibodies
  • Thyroglobulin antibodies
  • Thyroid Peroxidase antibodies
  • 21-Hydroxylase (Adrenal Cortex) antibodies
  • Myocardial Peptide antibodies
  • Alpha-Myosin antibodies
  • Phospholipid antibodies
  • Platelet Glycoprotein antibodies
  • Testis antibodies
  • Fibulin antibodies
  • Collagen Complex antibodies
  • Arthritic Peptide antibodies
  • Osteocyte antibodies
  • Cytochrome P450 (Hepatocyte) antibodies
  • Insulin + Islet Cell antibodies
  • Glutamic Acid Decarboxylase 65 antibodies
  • Myelin Basic Protein antibodies
  • Asialoganglioside antibodies
  • Alpha-Tubulin + Beta-Tubulin antibodies
  • Cerebellar antibodies
  • Synapsin antibodies
CellTrend CFS/POTS Diagnostic
  • Anti a-1-adrenergic antibodies
  • Anti a-2-adrenergic antibodies
  • Anti b-1-adrenergic antibodies
  • Anti b-2-adrenergic antibodies
  • Anti-muscarinic cholinergic receptor 1 antibodies
  • Anti-muscarinic cholinergic receptor 2 antibodies
  • Anti-muscarinic cholinergic receptor 3 antibodies
  • Anti-muscarinic cholinergic receptor 4 antibodies
  • Anti-muscarinic cholinergic receptor 5 antibodies
Cunningham Panel
  • Anti-Dopamine Receptor D1
  • Anti-Dopamine Receptor D2L
  • Anti-Lysoganglioside GM1
  • Anti-Tubulin
  • CaM Kinase II
Lab Corp
  • Anti-Mitochondrial Ab
  • Anti-Smooth Muscle Ab
  • Anti-Cardiolipin Ab
  • Rheumatoid Factor IgM
Quest Diagnostics
  • Beta 2 glycoprotein IgG, IgM, IgA
  • Lupus anticoagulant
  • Anti-phosphatidylserine IgG, IgM, IgA
  • Anti-prothrombin IgG (IgM is not currently available due to reagent shortage)
  • Anti-phosphatidylserine-prothrombin IgG, IgM
  • Anti-Annexin V IgG, IgM
  • Anti-phosphatidylethanolamine IgG, IgM
  • ANA by IFA
  • ENA
  • SS-A
  • SS-B
  • Anti TTG IgA
  • Anti Glaidin
MAYO Autoimmune Dysautonomia
  • Striational (Striated Muscle) Ab, S
  • Anti-Neuronal Nuclear Ab, Type 1
  • N-Type Calcium Channel Ab
  • Ach Receptor (Muscle) Minding Ab
  • AcChR Ganglionic Neuronal Ab, S
  • Neuronal (V-G) K+ Channel Ab, S
  • GAD65 Ab Assay, S
  • P/Q Type Calcium Channel Ab
MAYO Autoimmune Encephalitis
  • NMDA-R, Ab CBA, S
  • Neuronal (V-G) K+ Channel Ab, S
  • LG1- IgG CBA, S
  • CASPR2 - IgG CBA, S
  • GABA 8-R Ab CBA, S
  • AMPA-R Ab, CBA, S
  • ANNA-1, S
  • ANNA-2, S
  • AGNA-1, S
  • PCA-1,S
  • PCA-2, S
  • PCA-Tr, S
  • Amphiphysin Ab, S
  • ACh Receptor (muscle) Bind Ab
  • CRMP 5-IgG, S
Click to expand...
 
P

Peyt

Senior Member
Messages
679
Location
Southern California
Learner1, I did some tests with Cyrex Array Labs about 5 years ago, but the practitioner that ordered them was not able to help me any. She gave me a bunch of natural herbs/supplements which did nothing, in fact a few of them made me more sick.... The tests were not cheap either.
 
P

Peyt

Senior Member
Messages
679
Location
Southern California
Learner1 said:
Look into adrenergic antibodies...

http://www.dysautonomiainternational.org/blog/wordpress/new-evidence-of-autoimmunity-in-pots/

We're all unique. Different people on this site have different antibodies causing problems. Many are finding benefit with IVIG:

http://emedicine.medscape.com/article/1154266-treatment#d8
Click to expand...

Thanks I will look into it.
I am just wondering if there is a relationship with fast heart rate and kidneys?
The reason I say this is a couple of years ago a Chinese Herbalist gave me an herb which was suppose to help
Improve blood circulation for kidneys and I remember it calmed my heart! Too bad I could not continue to take it because it gave me GI problems... but it made me wonder why would addressing blood circulation in my kidneys helps slow down the heart rate?
 
Mary

Mary

Moderator Resource
Messages
17,900
Location
Texas Hill Country
@Peyt - tachycardia can be caused by low potassium and/or low magnesium. Low potassium caused my heart rate to go up quite a bit. People with ME/CFS can have low intracellular potassium, despite normal blood levels, and only blood levels are measured. Richvank did a good post on how this can happen: http://forums.phoenixrising.me/inde...ded-in-methylation-treatmt.18670/#post-291422

An easy way to get more potassium is to drink low-sodium V8 or low-sodium tomato juice, high in potassium and low in sugar. I have to take a potassium supplement daily (around 1000 mg in divided doses) plus drink low-sodium V8.
 
P

Peyt

Senior Member
Messages
679
Location
Southern California
Mary said:
@Peyt - tachycardia can be caused by low potassium and/or low magnesium. Low potassium caused my heart rate to go up quite a bit. People with ME/CFS can have low intracellular potassium, despite normal blood levels, and only blood levels are measured. Richvank did a good post on how this can happen: http://forums.phoenixrising.me/inde...ded-in-methylation-treatmt.18670/#post-291422

An easy way to get more potassium is to drink low-sodium V8 or low-sodium tomato juice, high in potassium and low in sugar. I have to take a potassium supplement daily (around 1000 mg in divided doses) plus drink low-sodium V8.
Click to expand...
Interesting,
My blood plasma Potassium and Magnesium are both fine.
How is low intracellular potassium measured? Is it a blood test?
 
Mary

Mary

Moderator Resource
Messages
17,900
Location
Texas Hill Country
Peyt said:
Interesting,
My blood plasma Potassium and Magnesium are both fine.
How is low intracellular potassium measured? Is it a blood test?
Click to expand...

I don't know, I don't think intracellular testing is readily available. I just went by symptoms. I first discovered my issues with low potassium when I started taking methylfolate 7 years ago. It caused my potassium levels to tank pretty badly within 2 days or so of starting it. I had read this could happen in posts by Freddd. My chief symptom was severe fatigue. Later I identified muscle twitches or spasms, and cardiac symptoms are also very common with low potassium. I titrated up to 1000 mg potassium over a couple of days and the severe fatigue went away. Also, I had had that fatigue before but never knew what it was. My potassium levels were always in the normal range, albeit on the low side of normal.

Since I've started supplementing with potassium gluconate plus the V8, I generally don't get this particular fatigue any more. But my heart rate did go up quite a bit after taking horsetail, which has diuretic properties. It took me a couple of days to figure out that it had lowered my potassium and when I increased my potassium intake, my heart rate returned to normal.

You might try ingesting some high potassium foods - one banana probably would not be enough - to see if they make a difference. This is why I recommend low-sodium V8 as a simple way to see if potassium would help. Low-sodium V8 has 900 mg potassium per 8 ounce glass and regular V8 has around 500 mg. A lot of people use coconut water for potassium. So I would try something like a couple of glasses of V8 and see if it helps and if it does, you might consider a potassium supplement (or not). Potassium should be taken in divided doses - not a huge amount all at once. I take 200 - 300 mg. 4 x a day, the last dose before bed - my potassium very often used to get low in the middle of the night, I'd get muscle spasms in my feet and lower legs and that has stopped now.
 
R

Rooney

Senior Member
Messages
191
Location
SE USA
Dr. Nancy Klimas said that if our pulse is higher than the 70s sitting, we are not drinking enough water. My cardiologist said the heart needs something to press against re water.
 
You must log in or register to reply here.
Back