MarcoS108

Whenever you do eat carbs are you eating them with enough fat and protein? You may find by doing so that it helps with reactive hypoglycemia. I sure know that if I do not eat fat and protein (Olive oil, coconut oil, nuts, seeds, meat) with a carb source (starches, fruit) I will have a severe reactive hypoglycemia reaction and will cause a big POTS flare up as well as major anxiety/mood issues. If this doesn’t resolve it maybe you should look into Addison’s disease as low cortisol will cause low blood sugar.

You can try one based off LMNT recipe.

16 oz water

1/2 teaspoon salt (Celtic sea salt or Redman real‘s)

1/16 heaping teaspoon potassium citrate powder (source nutrition brand)

1/8 teaspoon epson salts

1/8 or 1/4 teaspoon Stevia extract powder

1000 MG sodium

200 MG potassium

60 MG magnesium

Not sure, all the organ systems in the body are connected in someway, shape, or form so it would not surprise me.

On 8/20/2021 at 4:47 PM, MikeO said:

I agree food can cause issues. Just had this conversation with my vascular DR today. We talked about what makes me happy and food was not on the list he had nothing to add. Downside is that inflammation is bad. Weather caused by food or other causes like smoking, alcohol, viruses or reactions to drugs or food. Etc...  I am sure that the inflammation has wreaked havoc on my body.

The great thing is the human body has amazing potential for healing. If you look into the work of Dr. Joe Dispenza--according to him he has people healing their Parkinson’s disease, people stage four cancer, and other chronic health conditions through quantum healing methods and using the science of neurology and physiology to back it up. 

I am supposed to see them next Friday as my mom wants me to see a POTS specialist. The one guy (Dr Barboi) has a year long wait

13 hours ago, MikeO said:

So what is being said is to eat foods that have shown lower IgG or IGA concentrations when testing against a sample of your blood?

No, what I was trying to say is there are different ways someone can have a reaction to a food and that most doctors will test with only one of those ways (IgE). For example, someone may get a skin prick test with gluten or dairy and show up negative with IgE but if tested with IgG would show a positive reaction to that food. One may get blood testing for this, but truly one of the best ways to find out is to just cut out a food and re-introduce it a month later. Many with autoimmune conditions try the AIP diet and find it works wonders for their symptoms. Many with gut issues try the SCD or GAPS diet and find it is extremely beneficial. The IBS diet can be pretty beneficial at first especially if the individual has SIBO, but the only downside is those fermentable foods provide nutrition to our gut biome in the colon. The gut biome has huge impacts on human health ranging from the immune system, mental health, hormones, etc., so while it could be helpful at first it could be harmful in the long run. The important thing is that someone with POTS may find helpful, as well as other dysautonomias, is to find their inflammatory triggers as inflammation causes an increase in IL-6 which can increase the tone of the sympathetic nervous system

If you are dealing with auto immunity there may need to be some important lifestyle changes in order to dampen the immune system. Getting adequate amounts of Vitamin D can be important if your levels are low. . Two huge things that can worsen POTS symptoms though are  food intolerances and blood sugar management. Most doctors are only testing for IGE reactions but those are immediate. The immune system will also react to a food with IgG and IGA which can be tested with a panel from Cyrex labs. I followed the auto immune Paleo diet, and it was extremely useful for me with finding food intolerances and managing autoimmunity. The other thing that can be very useful is stabilizing blood sugar. If you get a glucose monitor you can check what your blood sugar is when you’ve fasted for somewhere around 12 to 14 hours. If it is in the 50s or 60s that is a sign of Hypoglycemia and you’ll want to make sure to not go long without food although we already have to do this as it is hard to eat a large meal with POTS. You may also want to make sure to eat an adequate amount of fat and protein with carbohydrate to avoid reactive hypoglycemia cause that is also a huge sympathetic stressor. Hope this is helpful

Vitamin C you can potentially help if you’re having histamine issues so that’s a plus. Unless you are taking like 10 to 15 g of fish oil every day you should not experience blood thinning. I take both and have not had any issues. 

Yeah I get this too usually when my cerebellum is overstimulated. Cerebellar damage is my cause of POTS and the cerebellum has an inhibitory affect on the vestibular nuclei while also receiving input from the vestibular apparatus in the inner ear. This is why gaze stability exercises are a prescription for POTS in functional neurology. They’ve helped me for sure. I've had it assessed by someone that gives RightEye exams. They are great for assessing brain and eye health

11 hours ago, MikeO said:

Too be honest outside of being really constipated i have never heard of this.

Yeah, the stretching of the rectum from the liquid is supposed to stimulate parasympathetic reflexes and the caffeine itself stimulates peristalsis so it’s supposed to have a synergistic affect versus just a water enema. There’s more info on it in case anyone is interested. I just know there seems to be a lot of digestive complaints with POTS and I’ve rarely had any myself. I was doing coffee enemas before I got diagnosed and then started doing them more frequently when I got diagnosed.

Does anyone on here use coffee enemas to improve their vagal tone? I know cardio is supposed to be good for the vagus nerve (heart rate), but coffee enemas are also supposed to be really good in terms of the digestive side of the vagus nerve as well as triggering the gag reflex and gargling. These are the brain exercises listed in Dr. Datis Kharrazian’s book “why isn’t my brain working” which was referred to me by my functional neurologist.

This doesn’t surprise me as my healthcare practitioner who’s a functional neurologist says the treatment he does for POTS is focusing on brain health (improving circulation, stabilizing blood sugar, addressing causes of inflammation, etc.) and gaze stability work.

On 6/17/2021 at 12:57 PM, MTRJ75 said:

I've felt much better over the last week. In fact, I had a pretty stressful day the other day where I had to spend 3 hours at the eye doctor, seated in uncomfortable chairs, followed by 2 hours in urgent care while my mother got x-rays after falling down the stairs (she's doing okay). I was actually pretty surprised how I came through the whole issue without any major issues. The last two mornings I've had less pain that usual upon waking and have actually had an appetite in the morning, a very rare thing for me. So, I made swhatome bacon and eggs, sat down to eat, cleaned up and then sat back down to work again...and that's when it hit. Every muscle in my body aching to burning to cramping to nausea, digestive emptying, clammy sweats, mouth and eyes went dry, field of vision started to blur or feel like when you get hit in the head or drink too much. The standard flare up for me with the works after minimal muscle activation and standing on what I thought was a good day. 

I know I've made many of these posts over the last year or two since I've arrived here, but that's because I continue to actually have anxiety, ironically after my system generates all the symptoms of an anxiety attack for an hour or so, because I'm still struggling to understand what exactly is going on in my body and why some things trigger it and others don't. The weather is beautiful today and has been the last few days, so I can't even blame heat or rain.

This is what I currently understand to be potential causes or mechanisms in the body: 

- lack of blood volume 

or 

- lack of proper blood flow (perhaps because I just ate, blood is pooling in my stomach and not getting to my other recently activated muscles or brain? Improper constriction or dilation)

- a chemical reaction in the blood caused by standing or minimal activity that shouldn't happen (too much lactic acid? But why?)

- actual nerve damage (autonomic or peripheral, but if this is the case, shouldn't it be more consistent?)

- dysfunction (the wrong messages are being sent from the brain to the nerves - is it because there is a neural dysfunction or actual damage in pathways? ie...is this something we might be able to fix by rewiring our brains? This would be the best case scenario, right?)

- immune system is attacking and causing actual damage to the pathways (in this case, mental rewiring would have no effect)

Sometimes I can tell when something is likely coming later on in the day if I even try to move off the couch. Sometimes, like today, I think I'm feeling well enough and maybe even have for a few days and I just don't know what I can and can't physically do that day and that's maybe what frustrates me the most. Would I have to have a flare or crash induced as I'm getting blood drawn for some kind of reaction to show up in bloodwork? 

Am I missing anything above or is it a combination of factors and how do I figure out what the exact mechanism actually is (because we can better target it if we know what's actually happening of course). 

According to my healthcare practitioner, who had POTS but has it in remission, POTS is always secondary to something else. He always emphasizes on working on my brain health versus getting fixated on addressing my autonomic nervous system. His mentor, dr. Kharrazian, has found that damage to the cerebellum is what he sees as the most common cause of POTS. Overactive basal ganglia can also be a driver of POTS which is seen in POTS patients from PTSD. In functional neurology vestibular rehab is commonly used to treat POTS which involves stability work (balance workouts) and gaze stability exercises.

3 hours ago, CallieAndToby22 said:

Have y'all done a food diary? Seems basic but when I was first diagnosed with Interstitial Cystitis and for any new patient, the first thing is to keep a food diary to see what bothers the bladder. It was a ton of things for me and I've just learned after decades what I can't eat and what I can eat. 

Yes, I spent a few months doing one before I had pathsI spent a few months doing one before I had POTS as I wanted to see if I had any food intolerances

53 minutes ago, Pistol said:

@MarcoS108 - I never developed an actual FEAR of eating but my eating habits completely changed. My GI tract was very much affected by dysautonomia, and I had severe GERD, inflammation etc. I had to re-learn how to eat in a way that agrees with me. Yes, @MikeO, I too found that eating 6 small "feedings" a day is better than 3 meals a day. I am now an official grazer - I kind of eat all day but not a lot in one sitting. When I do I usually pay for it by ending up in bed for a few days! And my go-to thing I like to eat inbetween are pretzels!

It is odd, I never had issues with my digestive system with my POTS (IBS, GERD, etc). If I eat a meal too big I’ll have to lay down for a couple hours. I can’t even imagine a couple days from one meal.

I am just curious to see if anyone else on here started to develop a fear of eating after developing their dysautonomia. Mine got to the point where I got down to 112 pounds as a 5’8 male and my metabolism got so low where I could only eat around 700 cal a day without it being too difficult on my autonomics. It turned out each time I was eating in fear it will create an auto immune response and I wasn’t absorbing any of The nutrients from my food

56 minutes ago, Pietro said:

I described in my previous topic how I've been suffering from some weird brain zap feelings, which are followed by an adrenaline surge in the stomach and sometimes I even lurch forward with a brief second myoclonus like spasm and brief one second tinnitus. These symptoms are always worse when I'm lying down and especially when trying to sleep. These "zaps" are the absolute worst when I'm in that transition between awake and asleep and it keeps preventing from sleeping because I'm always getting "zapped back awake"

Well, I've been getting even more desperate now because I noticed that when these "zaps" happen, it's like my body freezes up for that time, including my breathing muscles, and the scariest part about the zaps is that I literally feel like my breathing muscles are paralyzed for that brief amount and I have to struggle to manually breathe and shake myself out of the "zap". I don't know if I'm describing it well, it's very hard to describe the feelings, but it's very scary.

 

I also feel just generally terrible after these zaps, like I have a tight band around my chest, like I'm breathing against resistance and also have other weird neurological symptoms like tingling scalp, my vision feels unfocused, sometimes I get transient numbness in a limb, temperature dysregulation nausea, and crushing fatigue, especially after eating a rich meal. 

 

I had an MRI just two weeks ago because I was fearing some serious neurological issue like MS or a tumor, but the results were normal. Last year I also had a cardiac workup (EKG, Stress Test, Echo, Chest CT) and it was all normal as well. Also had a blood panel which was all normal as well except for slightly elevated CRP and Vitamin D deficiency.

Also, do you take B12? Taking some methylated B12 and methyl folate may help if you have a slow methylation cycle

12 minutes ago, Pietro said:

I described in my previous topic how I've been suffering from some weird brain zap feelings, which are followed by an adrenaline surge in the stomach and sometimes I even lurch forward with a brief second myoclonus like spasm and brief one second tinnitus. These symptoms are always worse when I'm lying down and especially when trying to sleep. These "zaps" are the absolute worst when I'm in that transition between awake and asleep and it keeps preventing from sleeping because I'm always getting "zapped back awake"

Well, I've been getting even more desperate now because I noticed that when these "zaps" happen, it's like my body freezes up for that time, including my breathing muscles, and the scariest part about the zaps is that I literally feel like my breathing muscles are paralyzed for that brief amount and I have to struggle to manually breathe and shake myself out of the "zap". I don't know if I'm describing it well, it's very hard to describe the feelings, but it's very scary.

 

I also feel just generally terrible after these zaps, like I have a tight band around my chest, like I'm breathing against resistance and also have other weird neurological symptoms like tingling scalp, my vision feels unfocused, sometimes I get transient numbness in a limb, temperature dysregulation nausea, and crushing fatigue, especially after eating a rich meal. 

 

I had an MRI just two weeks ago because I was fearing some serious neurological issue like MS or a tumor, but the results were normal. Last year I also had a cardiac workup (EKG, Stress Test, Echo, Chest CT) and it was all normal as well. Also had a blood panel which was all normal as well except for slightly elevated CRP and Vitamin D deficiency.

Have you tried seeing a functional neurologist? I think you will be able to get more I have a deeper look into what’s going on with you because that definitely sounds neurological. When that happens to you does it also feel like you are falling? A sensation as if the room or your body is shifting/moving? If so, that’s a pretty good indicator of cerebellar dysfunction which is also a very common driver of POTS

On 7/29/2021 at 9:00 PM, CallieAndToby22 said:

I have double and I literally went from housebound for a decade to being able to leave my house and do things with treatment so I don't think it's too big a deal. It helped me dramatically. My folate on recent labs is also extremely low and you have to use methyl folate, my mother is a nurse and said that having double is when it's worse and needs treatment. I'm just speaking from personal experience, it helped me but I get side effects from everything I take including supplements and vitamins. A woman at my church is a nurse and had a patient recommend deplin and said it helped her health drastically as well. My PCP was actually concerned but she prescribed normal folate which is wrong in the treatment of this mutation that's why I mention methyl folate which is what helped me in conjunction with methyl B12 and niacin which is a mild vasodilator. Edit: I also don't know if it helped the POTS or the many other diagnoses, I have so much going on it's hard to say, one thing is it definitely helped with fatigue and OCD. 

It may have helped with your POTS because it is helping clear out dopamine from your basal ganglia which are a common cause of POTS as well as OCD and a hyperactive mind. This is one of my drivers of my POTS as well as cerebellar damage. Vitamin B2, riboflavin, is also very important for the methylation cycle so taking that may help a lot. A fair warning your pee will get very yellow after you take it.

4 minutes ago, CallieAndToby22 said:

May I send you private message to ask questions? I have severe OCD but I don't want to hijack this thread. So sorry for those getting sick post covid..

Yes

@ElizaangelicaWhen you sit upright with better posture it requires more muscular contraction therefore more oxygen and blood flow. In my opinion, it is also common to see more of a hunched over posture when there is a decrease in firing from your motor cortex which would indicate to focus on brain health. One of my causes of POTS is basal ganglia dysfunction which also includes anxiety, OCD like tendencies, and muscle twitches. 

@MikeOThat can also happen if you eat a meal without adequate fat and protein to slow the release other carbohydrates into the bloodstream as well. Same goes for snacks

@MikeOYes, this will especially be the case if you eat a meal too large, too much carbohydrates (blood sugar/insulin effects on the brain), or too much fat/protein (take longer to digest). If you get sleepy after a meal that is generally a good sign you are eating too many carbs as the sleepiness is coming from GABA and serotonin in the brain. I find I always feel worse when this happens

@Haidar Badrando you also have anxiety as well? Muscle twitches, anxiety, and OCD like tendencies are usually a good indicator of basal ganglia dysfunction. They are a group of neurons in the brain that can influence your autonomic‘s and are one of my causes of POTS (as well as cerebellar damage). It may be of use if you find someone who is a functional neurologist or a functional medicine practitioner who has studied from the Kharrazian Institute.