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joshrandall

Struggling with mental health from this disorder...

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I have  was diagnosed IST, from pssible relating to dysautonomia, i went vegan for a while and tbh really got alot better, eating very good food. Then lately ive put alot of weight on, started to drink alot be unhealthy, takeouts, and I just struggle with the debiliation of this condiiton and the, chronicness, im 28, also this is so hard that lack of validation, nobody thinks there is anything wrong with me its really upsetting.

Also I dont know If I have something relating to adrenaline, but when i get adrenaline angry I pretty much feel like im gonna die and pass out.

can someone chime in.

 

Just struggling mentally.

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Dear @joshrandall - please see a trusted doctor or your PCP right away. The symptoms of dysautonomia can often feel overwhelming - so we need to reach out for help as soon as we can no longer deal with them on our own. 

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@joshrandall There is lots of validation to go around here in regards to symptoms and such, but that can only do so much. Pistol is right, please seek a trusted physician to help you out during this time as well. Once I found the right one it really lifted my spirits. 

Good luck and best wishes. 

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1 hour ago, joshrandall said:

I have  was diagnosed IST, from pssible relating to dysautonomia, i went vegan for a while and tbh really got alot better, eating very good food. Then lately ive put alot of weight on, started to drink alot be unhealthy, takeouts, and I just struggle with the debiliation of this condiiton and the, chronicness, im 28, also this is so hard that lack of validation, nobody thinks there is anything wrong with me its really upsetting.

Also I dont know If I have something relating to adrenaline, but when i get adrenaline angry I pretty much feel like im gonna die and pass out.

can someone chime in.

 

Just struggling mentally.

Hey bro. Not sure what IST is but I'm 31 and my life is drastically different. I'm bed ridden at the moment. Have been since September. Gained weight. Depressed. Scared. PM me If you wanna chat. You aren't alone. Things will get better. It just takes awhile to get this stuff figured out. Hang in there. Like I said, hit me up if you want to chat. I would add more to this post but I'm so tired from my doctor appointment. 

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@joshrandall It's really hard waiting around for answers and having to advocate for yourself when many don't believe you. I agree with other above suggesting you reach out to your doctors.  I have also found talking to a therapist a huge relief.  I get to unload my fears and frustrations and also walk through how to advocate for myself with the people who don't listen to me or take me seriously.  

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@joshrandall I was just diagnosed this year with IST related to dysautonomia, atrial tachycardia, and an AV block. My parents are very very invalidating as well. Even with treatment, my conditions are pretty debilitating at the moment, and they're annoyed that I say it's hard to find energy to do chores after school and two jobs. My mental health is suffering, too. I understand completely. This community will validate you and sympathize, and I'm forever grateful for finding this community. They've been so helpful. I recently reached out to a counselor to seek treatment for my mental health, though, and just that step has made me feel a little better. I hope you find what you need to help yourself.

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It might be a good idea to get into some cognitive behavioral therapy to learn how to work through this and not be triggered. 

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People in general do not talk about mental health often enough.  There is no shame in seeking help for something you're having trouble dealing with.  After all, Prince Harry of England admitted publicly his own problems!  Consider your local possibilities and perhaps try someone.  Also, can you use logic to break out of the unhealthy eating habits?  You know you are making everything worse by eating edible food-like substances instead of food.   I know this is hard, but you have probably done other hard things before, so you can deal with this, too.  

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I can understand reluctance to see a mental health professional when most of us have at some point had to deal with clinicians who believed our dysautonomia symptoms were pyschosomatic, however a psych consult can be extremely validating and helpful. 

Not only are they extremely good at recognizing when patients have a physical issue that is not consistent with any known psychological diagnosis, (for example when symptoms are orthostatic in nature & resolved by volume expansion), & providing useful supporting documentation to validate your illness, they also have a range of medications in their prescribing arsenal such as benzodiazepines, stimulants, sleep meds, atypical antidepressants etc that can be helpful in dysautonomia but that other specialists are unfamiliar with or not comfortable prescribing. They are also often more aware of side effects that can be caused by drugs prescribed by cardiologists or neurologists eg beta blockers, as these are also frequently used to manage anxiety disorders. 

Anxiety and depression are common in all chronic illnesses, & I think it is a shame that teams caring for patients with cancer or MS or HIV etc automatically have psychological services attached, whereas people living with dysautonomia which can be much more limiting & destructive to quality of life are usually only advised to seek psychological help as a fob-off by dismissive medical doctors.

B xxx

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