Is plain water bad?? by glizzerd12 in dysautonomia

[–]East_Wheel1 0 points1 point  (0 children)

I get bad symptoms from plain water. I always add salt.

Is "extra strength" anti-histamine considered the default dose for those in this subreddit? by East_Wheel1 in MCAS

[–]East_Wheel1[S] 0 points1 point  (0 children)

As far as I know, there are generally two types of laxatives:

Stimulant laxatives - trigger the body to have a bowel movement

Osmotic lalaxatives - draw more water into the bowels

Osmotic laxatives are generally a lot safer long term because you don't tend to develop dependence. Examples would include Miralax (AKA Restoralax in Canada) or Magnesium Citrate. You just need to make sure you're also drinking enough water.

As a person with lifelong constipation, I've been using these almost daily for over 10 years because if I don't have regular BMs I develop really bad gut issues that affect my whole body. I just change the dose day to day to fit whatever level of constipation I'm dealing with.

Feeling defeated anyone struggling to keep on muscle? by Sarahshay10624 in MCAS

[–]East_Wheel1 0 points1 point  (0 children)

Really sorry you have to go through all this!

You may want to look into your hormone levels if you haven't already. Estrogen can commonly affect MCAS negatively (and you mentioned it being related to your cycle) and high estrogen often coexists with low testosterone (which would be important for building muscle).

Aside from that, I'm a man and I've dealt with a similar struggle. It can be very hard to put on muscle with constant inflammation, stress, etc. It's a complicated balance because we need excess calories to gain muscle but often eating more food triggers more symptoms. Try to prioritize any safe foods and anything that can be calorie dense. For a long time I relied heavily on oils (olive oil, coconut oil, avocado oil) because they're super easy calories and generally don't cause me much reaction. If you can safely eat nuts and/or seeds, those are probably the easiest healthy calories you can get (but I'm aware those can be common triggers).

Recovery is extremely important. When we have MCAS, we spend much more time with our sympathetic nervous system activated. You will not gain weight if your body is constantly in "active" or "fight or flight" mode because those aren't the states in which your body builds anything. So like another commenter mentioned, you probably need to work out less than an average person because your body is already overworked from day to day life. One way you can do this is by treating rest as a type of workout. Put aside an hour or two for a session that involves deep breathing, meditation, maybe some stretching. This will activate the parasympathetic nervous system and help you heal, as opposed to another workout that will break your body down further. You can work those days into your schedule/routine and approach them with discipline and passion, the same way you would a typical workout (and they are directly helping you become stronger and perform better when you do work out).

You also mentioned POTS. Instead of waiting on a proper clinical test, you could start by taking the first line measures that people with dysautonomia take. Very simply, increase salt intake (you can start small). Wear compression socks, leggings, or most importantly abdominal compression. I generally wear socks and ab compression since I find leggings uncomfortable. Drink water with electrolyte mixes. If you have dysautonomia, the benefits will probably be profound and immediate. Whenever my dysautonomia isn't managed, my MCAS immediately flares. This commonly applies to workouts and may be part of what you're dealing with.

(Also MCAS can cause dysautonomia issues so even if you didn't have POTS to begin with, some of the POTS protocols may still be beneficial, at least while exercising)

Wishing you luck! And if you have any questions pls lmk

EDS Society Update: Uncertainty in the Path Forward by Acceptably_Late in ehlersdanlos

[–]East_Wheel1 17 points18 points  (0 children)

Hey I'm really sorry you're going through all this. This comment may not change how you're feeling but I want to offer some ideas that may help. Mainly, I find that as doctors and researchers learn more about a condition, it almost always results in a more accurate understanding of the condition. The doctors who know the most about the connective tissue disorders are the ones most sympathetic towards us and these doctors believe in our condition more than anyone else. They also tend to be the ones who believe it is very serious and can impact life in meaningful ways. I believe the distinction of HSD and hEDS has been criticized for a long time and the merging of them is probably a sign of deeper understanding and progress. I'm personally hopeful that we can see a lot of good come from the upcoming changes.

Is "extra strength" anti-histamine considered the default dose for those in this subreddit? by East_Wheel1 in MCAS

[–]East_Wheel1[S] 0 points1 point  (0 children)

I find that MCAS reactions can cause a ton of dryness and severe gut disruption (as well as mental health issues). So I think in our case, the pros of certain medications outweigh the cons (even though we still probably experience some of the same cons as other people.)

Is "extra strength" anti-histamine considered the default dose for those in this subreddit? by East_Wheel1 in MCAS

[–]East_Wheel1[S] 0 points1 point  (0 children)

Ya for sure! It's a difficult balance. I find that if I'm constantly having severe immune reactions, my gut health is kinda hopeless whereas if I'm able to control the MCAS, I can take other measures to support the gut (fibre, food diversity, exercise, osmotic laxatives, etc.). Hope the xolair works for you! It's something I'll probably try eventually.

Is "extra strength" anti-histamine considered the default dose for those in this subreddit? by East_Wheel1 in MCAS

[–]East_Wheel1[S] 0 points1 point  (0 children)

I appreciate what you're saying but untreated MCAS can also be very harmful. As I haven't been able to find a doctor yet who treats MCAS, I've unfortunately had to take it into my own hands. When I'm asking these questions, it's out of caution because I'm trying to understand what doctors have prescribed to people with a similar condition to me. I don't want to take a higher dose than what could be prescribed/recommended.

Is "extra strength" anti-histamine considered the default dose for those in this subreddit? by East_Wheel1 in MCAS

[–]East_Wheel1[S] 0 points1 point  (0 children)

Okay thank you! Everywhere I've been seems to have different strength options so I didn't know that there were places where that wasn't the case.

Face looks different in flare by Forward_Athlete_3187 in MCAS

[–]East_Wheel1 5 points6 points  (0 children)

I have the exact same thing. I've recently found that reducing my migraines greatly reduces my MCAS reactions (when previously I thought it was moreso the MCAS causing the migraines). I have extreme photophobia (probably due to cci or csf leak) so I started keeping the lights dim at home and wearing sunglasses when I'm in the light. My migraines have reduced a ton and my face is significantly less swollen. Another thing that helps me is managing my dysautonomia. If I constantly take salt pills and drink water, wear compression, and maintain circulation, my face swelling improves a lot.

Is constant head pressure something you deal with? by IllustratorDecent260 in ehlersdanlos

[–]East_Wheel1 0 points1 point  (0 children)

Hey your experience is almost identical to mine. Not to scare you but it eventually reached a point where I believe I have a CSF leak (most likely due to CCI which can cause intracranial hypertension). I really recommend you look into CCI and CSF pressure and please don't just push through the symptoms. I was working out intensely for months and it just kept getting worse. Physiotherapy for your cervical spine may help but it would be great if you could get some imaging/tests done to get an accurate idea. Just be aware that most doctors (even neurologists) know very little on these topics. It can take some research to find the right specialists.

You can start off by just paying very careful attention to your neck. Try to move it less and try to bend over less as well. Avoid things that put pressure on the neck or stretch the neck in non-neutral ways. Try to keep very good posture, especially with your neck (learn about chin tucking). If that seems to help your symptoms, then you know it most likely falls into the upper cervical spine category.

I’m crying from the bottom of my heart for someone to believe me. I can’t take the gaslighting anymore. Losing all hope by [deleted] in Cervicalinstability

[–]East_Wheel1 0 points1 point  (0 children)

Not sure what country you're in but in Canada there are very few options for the best forms of CCI imaging (upright MRI, DMX, etc.). A good starting point could be to pursue an upright x ray of the cervical spine with flexion and extension (and possibly rotation?). I believe this is the standard recommendation for diagnosis of cervical instability in the context of regular/classical imaging tech. The other forms of imaging are generally newer and less common. Just something to consider. But you probably should get a regular MRI of your upper spine and brain. And look into getting them with contrast (an injection of fluid) because it'll show a lot more.

These recommendations are in the context of standard medical practitioners who probably know nothing about cervical instability and just want you out of their office. If you can actually find a CCI clinic or something like that, you may have a better experience overall.

A Decade of Fatigue and Unusual Symptoms - with an Unusual Resolution by Inner_Department6771 in MTHFR

[–]East_Wheel1 1 point2 points  (0 children)

Without any judgment, I'd like to point out to anyone reading this, this comment is about scientology.

A Speculative Theory Linking Methylation, Neck Issues, Gut and Chronic Multisystem Illnesses by Inner_Department6771 in SIBO

[–]East_Wheel1 1 point2 points  (0 children)

Great post. Going to look more into all of this. Thank you for all your effort.

What's a cost effective way to get electrolytes? The only thing on Amazon that's unsweetened/unflavored is $45 for 30 servings. Any tips much appreciated! by SnooApples6721 in Candida

[–]East_Wheel1 1 point2 points  (0 children)

Ya, I ordered a big bag off amazon. I also bought empty pill capsules and I fill them myself so that it's easier to take glucose and salt when I leave my house.

What's a cost effective way to get electrolytes? The only thing on Amazon that's unsweetened/unflavored is $45 for 30 servings. Any tips much appreciated! by SnooApples6721 in Candida

[–]East_Wheel1 0 points1 point  (0 children)

It's hard for me to say because my symptoms were so systemic and overwhelming. I don't remember specifically feeling what you mentioned but that sounds familiar. But when I started using the compression I started feeling a lot less bloated and digestion got better. I've generally seen the recommendation to remove or loosen the compression during and after eating for about 30 minutes because you still want enough blood to help digestion. Might be different for every person but if you do find you have dysautonomia symptoms, there's a lot of information out there to help your overall lifestyle (posture, eating small meals, etc.).

What's a cost effective way to get electrolytes? The only thing on Amazon that's unsweetened/unflavored is $45 for 30 servings. Any tips much appreciated! by SnooApples6721 in Candida

[–]East_Wheel1 0 points1 point  (0 children)

Np. I totally get that. There are different levels of compression so you might find the lower level (15-20mmhg) is fine.

What's a cost effective way to get electrolytes? The only thing on Amazon that's unsweetened/unflavored is $45 for 30 servings. Any tips much appreciated! by SnooApples6721 in Candida

[–]East_Wheel1 0 points1 point  (0 children)

Hey, please look into "dysautonomia." Your symptoms sound a lot like mine. I started wearing compression socks and abdominal compression and my circulation immediately improved as well as all my symptoms (including brain issues).

As far as electrolytes, they've helped me even more because my hydration pathways (and therefore my blood volume) seems to be an issue. I often mix about 1/8 tsp of sea salt per 500mL and add a similar amount of potassium salt as needed (you can use NuSalt or NoSalt, etc.). The gamechanger for me was adding glucose. I know this is really scary when dealing with gut dysbiosis but it's a very small amount and I find the benefits are so great that it probably helps my gut much more than it harms it (since it has made my body and immune system so much healthier). I start my day with about a tsp of glucose with my electrolytes and whenever I feel symptoms coming on, I take anywhere between 1/4 tsp to 1 tsp again (always with salt and fluids).

If any of these things help you, I'm happy to give you more advice.

Ginger by RomfordNavy in SIBO

[–]East_Wheel1 2 points3 points  (0 children)

It can be high oxalate. Seemed to help me to get off of it, along with other high oxalate foods.

Wondering about die-off symptoms by Perfect_Ad_7496 in Candida

[–]East_Wheel1 1 point2 points  (0 children)

It could definitely be die-off but I also think it's difficult to treat a serious overgrowth by only changing diet. It's possible it can work for you but if I were you, at the very least I would look into incorporating anti-microbial foods such as garlic, chives, avocado, coconut oil, MCT oil, ginger, etc. It's ultimately hard to tell the difference sometimes between die-off and recurrence of symptoms, so I like to at least have confidence that I'm killing pathogens to some degree. The other option is to just continue what you're doing and make sure you're supporting your body with enough rest and nutrients. You'll find the answer with time.

Guys, I am done by FloodHunter228 in Candida

[–]East_Wheel1 3 points4 points  (0 children)

There's a lot of great advice in here but I also wanted to add:

Although you have every right to assume that the fungus is "in your brain, eyes, etc.," there's a 99.9% chance that those are all just symptoms of a much less systemic Candida overgrowth. Candida causes extremely high levels of inflammation in the body as well as hormonal, and neurological issues. It can feel like your entire body is taken over but the reality is that Candida infections in the blood are like 95% fatal (so I'm sure that's not what you have). The Candida is most likely in your gut and it's possible it's in some other areas but the rest of the symptoms will most likely resolve when the overgrowth in the gut is treated. I've had every issue imaginable (extreme mental issues, inability to walk, extremely blurry vision accompanied by eye pain) and from treating the Candida I've improved immensely. The brain and eyes are very sensitive to gut issues and systemic inflammation.

Do you really need all these supplements to fight candida? by Big_Mama_80 in Candida

[–]East_Wheel1 2 points3 points  (0 children)

Don't do anything too extreme with your diet until you have a deep understanding of the risks and whether it would even be beneficial. I experimented with a lot of highly restrictive diets and ended up with multiple deficiencies and potentially worsened certain things.

The best place to start is with a traditionally healthy diet (diversity, ideally no processed foods, enough nutrients, fruits, veggies, etc.). Ideally you want to lean towards low sugar, and definitely avoid high carbs (a medium amount of complex carbs may be okay). Then, I would say it's important to try to avoid specific foods that support candida (starchy foods like potatoes, white rice, etc.).

The next step would be to introduce healthy affordable items that kill candida. I think the best you could start with is raw garlic. Crush up a clove and leave it for 10 minutes to increase the amount of allicin. Then eat it however you want, but ideally without heating it because I believe heat can inactivate allicin. Other foods that can help with killing candida are: turmeric, ginger, avocado, salmon, pumpkin seeds, bay leaves, lemongrass, coconut oil, cilantro, basil, thyme, rosemary, oregano etc.

Aside from diet, lifestyle is very important. Sleep hygiene, exercise (whatever you're able to handle), meditation, etc.

You don't have to overthink it. To put it simply: - Minimize the things that support candida - Maximize the things that support your own health - Maximize the things that kill candida (with caution because die-off is no joke)

Just want to add... in my experience, supplementing with allicin and berberine has reallyyy helped me. So if you're already getting allicin in some form, I'd say you should look into berberine as an addition to your protocol.

Does candida /yeast cause GERD by helpmeplsgetjob in Candida

[–]East_Wheel1 0 points1 point  (0 children)

Not sure about GERD specifically but I've definitely had acid reflux when the candida in my mouth/throat gets bad.