How to help when overstimulation gets really bad

[bearfan]

Alexandru Barboi. He’s a neurologist. Can’t really give a full review other than he’s very nice and seemed very familiar with the symptoms I have. From what I have heard it is not easy to get into him. I’m waiting for the “autonomic testing” at the end of March. And like POTS, it’s nice if I can get a diagnosis, but I really only care about the treatment. I don’t care what I have, I’m just asking for help with feeling better.

Time will tell if that comes via that route. So, once again, as of right now I can’t give a full review. I have read some things on the internet that he can give a diagnosis but the treatment may not work. You can google his name and look at Vitals.com and Healthgrades. Most reviews I saw reflect what I say, but in terms of the actual treatment only a couple reviews mentioned successful treatment.

Whatever form of POTS, or dysautonomia, or head trauma I have, is really irrelevant to me. I really am just desperate for some help. Not even a complete cure at all, at least something that could make me feel 20% better would mean the world to me. Getting to the point where I don’t end up having suicidal ideation because of my constant discomfort (and killer headaches nearly every damn day), is my goal. If I have limitations, fine, I just want to be content in my body enough to have a natural will to live.

I’ll update after those tests. Unfortunately I have to withdraw from Cymbalta and Clomipramine for the tests, so that will be an interesting week. Not looking forward to it.

As of now, I’ve declined somewhat, so I am gonna try and make myself stay off screens for the being so I’ll try to at least update after I see him near April.

All the best to you.

 

[bearfan]

I'm sorry to hear about your suffering. Sending you good wishes.

Some things I find helpful:
- noticing that my symptom severity changes over the course of the day, and the week. It's not constantly only terrible. There are better moments.
- being grateful for those better moments
- remembering that when things are really bad, it will pass, it won't stay awful constantly
- valuing that I am learning patience as a skill; the suffering is teaching me something
- the story we tell ourselves about our suffering can add to our suffering, eg 'I'm always going to be like this, it's never going to get better' - so change the story
- actively trying to accept my suffering

I can hear your desperation, which is a horrible thing to experience. I hope you feel differently towards your physical experience soon, and that your physical experience will improve greatly

Also, @lior , I just wanted to say a special thanks to you for your post. I still haven’t felt good enough to read every post word for word and respond, but I luckily enough was able to read yours. I screencapped it and keep it in somewhat of my “coping album” in Google Photos.

It is highly relevant to me especially on those days, which today is one sadly for me, to remind me of the perspective I need to have. Sometimes I get caught up to much in the present and make up those stories like you said. Like, “it’ll never ease up”, or “I’m doomed to feel like this forever”. I get trapped in that thinking without even knowing it, and instead focus on despair instead of coping as best I can. You really couldn’t have put it much better. Thank you very much. I’ll continue to utilize that photo! Lol

 

[PracticingAcceptance]

So glad to hear I could help @bearfan . I'm flattered my words have been screen grabbed!

I got those ideas from Toni Bernhard's book How To Live Well With Chronic Pain and Illness. If you're well enough to read a book, I recommend it

Hope you are able to put any useful coping mechanisms into practice with ease.

 

[jesse's mom]

I got those ideas from Toni Bernhard's book How To Live Well With Chronic Pain and Illness. If you're well enough to read a book, I recommend it

I love both of her books! The best books that have helped me in this journey.

 

[Crux]

Hi @bearfan ,

Terrible news that you're in so much pain.

From what I've read about head injuries, the micro-bleeds leave hemosiderin deposits behind in the brain. The iron in hemosiderin can cause a lot of inflammation, resulting in elevated cytokines and nitric oxide.

Excess nitric oxide is associated with migraine and pain.

Increased excess brain iron is associated with neurodegenerative diseases.

I really hope the neurologists find the cause of your pain.

 

[invisiblejungle]

Alexandru Barboi. He’s a neurologist. Can’t really give a full review other than he’s very nice and seemed very familiar with the symptoms I have. From what I have heard it is not easy to get into him. I’m waiting for the “autonomic testing” at the end of March. And like POTS, it’s nice if I can get a diagnosis, but I really only care about the treatment. I don’t care what I have, I’m just asking for help with feeling better.

Time will tell if that comes via that route. So, once again, as of right now I can’t give a full review. I have read some things on the internet that he can give a diagnosis but the treatment may not work. You can google his name and look at Vitals.com and Healthgrades. Most reviews I saw reflect what I say, but in terms of the actual treatment only a couple reviews mentioned successful treatment.

Whatever form of POTS, or dysautonomia, or head trauma I have, is really irrelevant to me. I really am just desperate for some help. Not even a complete cure at all, at least something that could make me feel 20% better would mean the world to me. Getting to the point where I don’t end up having suicidal ideation because of my constant discomfort (and killer headaches nearly every damn day), is my goal. If I have limitations, fine, I just want to be content in my body enough to have a natural will to live.

I’ll update after those tests. Unfortunately I have to withdraw from Cymbalta and Clomipramine for the tests, so that will be an interesting week. Not looking forward to it.

As of now, I’ve declined somewhat, so I am gonna try and make myself stay off screens for the being so I’ll try to at least update after I see him near April.

All the best to you.

Thanks Bearfan. I had heard of Alexandru Barboi, and I hope that you have a good experience with him.

Like yourself, I have suicidal ideation because I've been mostly homebound and bedridden since age 23. I'm turning 35 soon, and it feels like my life was stolen from me. Even improving just a little bit, to the point where my body is no longer a source of torture, would be enough.

I wish you the best, and I look forward to your updates.