RichGotsPots

i know about Juicing from my mother, she had ovarian cancer and a raw/juicing diet has kept her cancer at bay. She has a twin slow juicer and a seperate wheatgrass juicer. For both juices you want to make sure the pulp is out so I use a strainer to smoothen it further. For wheatgrass this is very very important because people can not digest wheatgrass fiber it is too sharp for our system.

Also it is very very important to start very slow on wheatgrass and work up. First start with 1 oz for 6 weeks and then every 6 weeks increase until 4-5 oz. Also most people see it like a tequila shot and down it quickly, that will make you nausea. It should be sipped slowly like tea and I recommend chewing it in your mouth to warm it up and add some saliva enzymes, it is very healthy for teeth too.

My mother learned her diet from Hippocrates Health institute in Florida http://hippocratesinst.org/ They have been around a long time and the founder was Ann Wigmore, who was the first person to really take advantage of wheatgrass juice.

one of these days I'll start juicing fresh wheat grass, it's a powerful healer..

After talking to many people about their breathing problems, I've come to relieve that some people have like myself have have two breathing problems. 1 is typical like Asthma or COPD and the other problem is completely POTS related. There has been research on this and it was found that there is hypocapnia (is a state of reduced carbon dioxide in the blood) http://ajpheart.physiology.org/content/291/2/H904.full.pdf and it's theorized that it's from chronic hyperventilation. It maybe be some kind of hyperventilation but hyperventilation is related to various different lung dysfunctions. This follows what Fiona-Jane was told because this leads to cerebral hypoxia. Only problem is they say even severe hypocapnia is well tolerated according to wikipedia. My breathing problems are awful and not well tolerated lol

I'm trying real hard to figure it out and how to fix it..

I really want a vita mixer, but they are so expensive, maybe one day...

The theory is drinking juice without the pulp is also easier on your digestive system and allows your body to absorb more nutrients. Pulp is healthy so blending and raw veggies are healthy too. Pulp is a great intestinal sweeper. I think Juicing give more energy because my digestive system gets a break while getting tons of nutrients..

He says that if I get symptoms while sitting I'm the worst case of POTS him and another Dr friend have ever heard of. I know that's not true from reading everyone's experiences. Problem is he won't go off of experiences, he wants studies proving it...

Go with the studies on upright neurocognitive deficets.

Rama, can you please message me some links to them? this is really important...

Does anyone feel bad also sitting. I don't think I can work feeling like this. Even sitting is hard for me. Can anyone point to a study that shows this, I have to prove it to my doctor?

I need some concrete studies to convince him.

He just sent me this email too:

"Pls send me studies on how pots pts can have these symptoms even lying down

That's crucial to see before I can draft a letter

Legal standard is quite high for disability letter

It's one thing to say looks like pots let's treat it and see if pt. Feels better

But another entirely to convince insurance company you can't work indefinitely Because it's all pots

I consulted an expert colleague at NY hops and he said if someone has pots symptoms seated much less lying down it's the worst case he has ever seen

So pls help me while we both look deeper

You cant do any sort of work? Cannot work at computer 30-60 min at a time?

They will send 10 page form asking how much you can stand, sit, push, pull, reach, carry, etc in great detail"

i was dx with POTS. my symptoms happen anytime, even when sitting or laying down. when first dx i felt like i was going pass out 24/7, even when i was laying down. not sure why they call it POTS. i just think my nervous system doesnt work right. your nervous system controls things like body temp (i can be hot one minute and chilld/freezing the next) it controls heart rate (i get tachycardia, worse when laying down), it controls pupil dialtion and my pupils look like they r always spasming, it controls respiration (for years i couldn't breath). i can't sit for a long period of time, or stand. i ve been sick for 10 years, kept thinking i was going to get better, but starting to accept that i am not. thinking of filing for disability myself. i feel like such a loser.

and if i did work, it would mean driving, and this i don't do much cause half the time i feel funny. who this that rich, your dr. or the lawyer?

That's from my doctor

Rich,

My autonomic neurologist goes every year to this conference and then presents the "best of the best" at a local patient support group meeting. Last year the meeting was in the US (Florida, if I recall).

http://www.americana...micsociety.org/

I did find this cool conference http://www.isanweb.org/

The conference you mentioned is probably good because Vandy is involved.

Regarding bringing new drugs to market, honestly I would be happy if they would just do some off label clinical studies on existing drugs... all they have to do is say they want to test, let's say, hyperPOTS people, then sign up 100's of people then start testing whatever drug they feel would help the most. But my point is they should do it in a controlled clinical environment. Maybe they've done this for one a two drug but I haven't seen the studies about yet. Like I mentioned Dr. Grubb has published very small studies on a bunch of different treatments, but I don't think they were controlled studies, more of an observational or survey type of study.

Best,

Rich

I have been juicing for maybe 6-7 years off and on. It is a pain cleaning most juicers so that's why I had some time off. I'll give you some tips I've learned.

I've had a Juiceman, which was bad. I had a champion juicer which was okay. I had the jack lallanne juice which was good. I had a green star twin juicer which was great and now I have an Omerga VERT juicer which is my favorite by far.

For starters the faster a juicer spins the hotter it gets and that heat can kill the enzymes and vitamins in the juice. The Juiceman and Jack Lalanne juicers spin the fastest so you have to drink that juice within 5 minutes of juicing to get all the nutrients. Ever notice on some store bought juice they are pasteurized (heated to kill bacterial growth) so they have almost no vitamin even if not from concentrate unless they have vitamins added. Jack Lalanne was a good juicer because it was easy to use, had a big funnel feeder and was super easy to clean (could put parts in the dishwasher), it also produced a decent volume of juice, but the pulp was still wet and it was so much better for fruit than veggies (veggies were half wasted). Champion was a solid juicer, it produced a lot of juice, but was a pain to clean and also spins fast to had to drink the juice within 5 minutes. Greenstar twin was the most expensive. It is a slow juicer so you can store the juice for a long time. It produced tons of juice, but was the biggest pain to clean. My Omega VERT is a slow juicer, it's easy to use and easy to clean and produces almost as much juice as the GreenStar.

I've heard of people swearing by Sun Chorella, this red box. It's from Japan. Also I've heard good things about this vegan powder for energy called Vega

Hi everyone,

I'm starting the process of disability and starting by trying to get my POTS specialist to write me a letter for disability.

This is what he said,

"one concern i have about the whole picture is why you have disabling symptoms seated at a desk

pots symptoms should be limited to standing, not seated

i will have to look into this if i can find data on pots symptoms while seated ill write the letter

if there is nothing on that then it becomes difficult to explain"

In other words he thinks I can work if I can sit at a desk. I'm really bad of and some days can't get out of bed. Does anyone have a good response to him, especially research which shows how we are disabled even when seated?

Thank you,

Rich

not a fan of cooked kale but juiced it's not as bad. Got this off web md:

Kale is a Nutritional Powerhouse

Super-Rich in Vitamin K"

interesting

Rich- that's because NSAIDs raise blood pressure by blocking the effects of prostaglandins. I've also read an article by mayo that said people with MCAD are often sensitive to aspirin as well

Juile- can you PM me that Mayo article?

Nice poll!

Hi - I havent seen a poll like this for a while so I thought Id pop one up.

Just a basic question about medications - which one ultimately has been the most helpful and which was the one you were least able to tolerate

Thanks for posting this

Some people have told me that they have had good results with taking antihistamines like zantec and claritin. I think I've had a very slight improvement. But I've taken singulair for months without any noticeable improvement. So that's why I think my histimines are dysfunctional and maybe not my mast cells. That's just my own experience, but I want to get tested for MCAD eventually.

My allergy tests showed normal IgE levels, but my IgG levels were low. I wonder how IgG levels have to do with histimines, maybe nothing because my allergist didn't mention any connection...

Anyone know of any histimine dysfunctional things besides MCAD, where mast cells aren't involved?

Hi Everyone,

Just wanted to let everyone know that I've been using a slow juicer to juice tons of veggies and it has greatly increased my energy.

I juice spinach, kale, cucumbers, celery, collard greens, asparagus (my favorite)

I add tomatoes and baby carrots to counter the bitter taste.

I also add green KYO Green powder that has wheat grass, barely grass and chorella.

I drink about 24-32 oz of in the morning on an empty stomach and I don't eat anything until 90-120 minutes later. Sometimes I drink 16oz in the morning and 16oz around 3pm.

It's doesn't help with my blood pooling but I'm not fatigued as quick.

Because my energy is double sometimes I can over do it, forgetting about my blood pooling...

Since I use a slow juicer called Omega VERT, I only have to juice once every 3 days because it stores in the refrig for up to 48 hours..

Hi everyone,

I stumbled across two autonomic research journals unfortunately it looks like you have to pay to view the articles for one

Clinical Autonomic Research Journal-subscribtion

http://www.springer.com/medicine/neurology/journal/10286

Autonomic Neuroscience- free articles

http://www.autonomicneuroscience.com/

I think that it's not a matter of patients leading the research, it's a matter of patients being the research. There are research medical PHD's trained better than anyone on how to research issues causing symptoms in illnesses. They are make strides in that there is even now two journals that I know of on Dysautonomia that I will post.

What I see that is still missing is an international conference that brings these specialists together with tons of patients and we are missing any kind of pharmacological company testing coming from all of this great research. Major autonomic clinics like Mayo and Vandy would have to lead this effort. Since I haven't to been to any myself I can't say why pharma trials have been slow to start. Very small studies like Dr. Grubb has published have been leading the way in treatment options, but with an estimate of 500,000 - 1,000,000 patients with Dysautonomia in America alone, I would think that we should have had large studies easily organized by now. Maybe there just isn't enough awareness out there, which could be an issue..

As a patient I think our experiences do count for a lot and when we have positive diagnosis and we have been to clinics who have classified us, then our experience account even more. I've read 100's of clinical studies and a lot of the time the researching PHD quotes the patient about their experiences. So while patient experiences can't replace controlled clinic studies it has a lot of value especially from a very large group of patients.

I for one wish that I didn't have to do any research and when I walked into my specialist office they could tell me exactly what type of POTS I had and the possibilities that some medicines will work better than others because of such and such. Why should I have to learn more about medicines from a forum website than my own doctor, but sadly that's been the case for me..

Hey Mack's mom any idea why you can't receive new messages?

Dr. Ronald Schondorf

Neurology

SMBD Jewish General Hospital

3755 chemin de la Cote Ste Catherine

Montreal, QC H3T 1E2

Dr. Maxime Lamarre Cliche

Institut de Recherches Cliniques de Montreal

110, Avenue des Pins Quest

Montreal (Quebec) Canada H2W 1R7

Autonomic Laboratory

POTS, NCS, PAF/Secondary Autonomic Failure, MSAJean Cusson, M.D., Ph.D., FRCPC

Internal Medicine Division,

CHUM (Centre hospitalier de l'Université de Montréal)

CHUM (Hôtel-Dieu)

3840 St-Urbain

Montréal, Qc, H2W 1T8, Canada

Phone: 514-843-2723

Fax: 514-843-2741

E-Mail: jean.cusson@umontreal.ca

Multiple System Atrophy (Shy-Drager Syndrome)

Orthostatic Intolerance (POTS, mitral valve prolapse)

Other autonomic disordersJohn D. Stewart, M.B.B.S., F.R.C.P.©

Montreal Neurological Hospital

3801 University Street, Room 365

Montreal, Quebec

CANADA H3A 2B4

Phone: 514-398-8980

Fax: 514-398-1285

E-mail: john.stewart@muhc.mcgill.ca john.stewart@muhc.mcgill.ca]

Multiple System Atrophy

Pure Autonomic Failure

Diabetic Autonomic Failure

Orthostatic Hypotension]

They are Familial Dyautonomia group but some of the doctors who treat this disorder also treat regular Dysautonomia, try to call and see if they have a doctor list..

Montreal Chapter of Dysautonomia

3551 St-Charles Blvd., Suite 155

Kirkland, Quebec

H9H 3C4

I'm not well versed on NO as I should be, but looking around for a non-drowsy muscle relaxant I saw something that was interesting.

http://en.wikipedia.org/wiki/Neuromuscular-blocking_drug This page lists adverse affects of this type of medicine and it says "hypotension

^{[11]" I don't think NO is involved or at least they don't mention it but they do mention "i}nhibition of acetylcholine"

never heard of BP being regulated by release of histamines. That would seem like a link between MCAD and Dyautonomia, but like I said I don't know much about it..