How to help when overstimulation gets really bad

[bearfan]

It’s extremely bad today. All I can do sit in a dark room. I can barely even talking to this boy just dictation. The pressure behind my nose and my ears is immense. I keep having this pulsing or popping in my ears I’m seeing flashing of lights behind my eyes. I literally cannot tolerate any sensory right now

 

[bearfan]

My sleep disturbances are really bad. I’m having a really vivid dreams. I have points where I don’t know whether I’m awake or asleep. I’m getting some sort of sleep paralysis. I’m getting sleep hallucinations.

 

[raghav]

Try taking Bacopa Monnieri 250 mg at night before going to bed. It will calm your racing thoughts and hyperactive nervous system. You can try Himalaya brand. I take it.

 

[bearfan]

Howard, were you able to return to a normal state of functioning? And by that I mean do simple things like watch TV or walk a dog if you have one?

It doesn’t have to be full 100% functioning, but at least something that gives your life, you know.

 

[bearfan]

@bearfan

There are many great suggestions here.

I'm sorry you are suffering so badly. I was in the same exact position no more than two and a half years ago.

It was necessary for me to wear sunglasses and earplugs underneath soundproof earmuffs while keeping the blinds closed.

I couldn't watch television, much less listen to music. Even the briefest conversations with my wife were painful. And the list goes on.

A change in diet may have been slightly impactful overall, but my saving grace was meditation. It helped quiet my mind.

The process was gradual, more gradual than I would have liked, but now I'm to the point where I can function mentally, and for the most part, with a clear mind. And my overall anxiety is greatly diminished. I can even self treat myself.

The only way, and the simplest way for me to quiet my mind is to focus on two separate things at one time, that way, all of my thinking thoughts are eliminated, if only for a short time.

Example:
Focus on an object with your eyes, while also concentrating on relaxing your shoulders.

Do this for 30 seconds, keeping your eyes focused and your shoulders relaxed.

The more you practice, the longer you can do it, and without all of these random thoughts ruminating in your head, you can more easily relax.

The feeling of being overwhelmed eases.

It is imperative that you focus on both of these at the same time, or else thoughts will come back into play, cluttering your mind.

If the mind is calm, the body is calm.

Another one is to listen to background noises while also relaxing your gut.

Focus on both things at the same time for as long as you can. 15 seconds, 30 seconds, two minutes, it doesn't matter. Gradually increase the duration when you can and practice this throughout the day, or even at night so that you make it back to sleep.

As long as you pick two things to focus on at the same time, your mind will stop racing.

This practice literally saved me. Before, each day was extremely painful, and I thought I was going insane.

You can get through this. You can do it. Aim for small victories. Cherish the moments when your anxiety is relieved, however briefly. It gets better. Trust me. The external stimuli will bother you less and less as time passes.

If you have any questions, please don't hesitate to ask me. I learned many techniques from the therapist who I speak to online. He's quite good, and his focus is mindfulness.

Speaking to a professional may also be your preferred option. I'm just a regular guy who was going through something similar.

I hope this wasn't too much information to take in...

H

Please look at my previous comment and reply if you can. Thank you.

 

[bearfan]

@Howard

Please reply if you can. I just really need some help today. Thanks so much

 

[Howard]

@bearfan

I'm glad you asked, and was hoping you would respond.

I have greatly improved over the past three years. I won't go into any additional details based on what I couldn't do then, but I'll give you an idea what I can do now.

I can watch an entire basketball game on television, as long as the sound is kept at a reasonably quiet level and I take a 15-minute break at halftime.

This may not sound like much, but I can entertain my cat. I can pet her for long periods of time and play with string.

I can have highly involved conversations with my wife, lasting up to 30 minutes in duration.

I can make handwritten notes for myself, as well as keeping notes in a notebook.

I am able to keep the blinds pulled open all day long, and I live in Arizona, lots of sun!

Also, I'm still bedridden, but I can sit up for minutes at a time now.

When funds become available I'll be working on healing my gut.


I hope this wasn't too much information...

And lastly, I am absolutely thrilled that I can communicate with other human beings utilizing the voice-to-text feature.

Let me know if you need anything else!
Howard

 

[Mary]

@bearfan - the Luvox might be contributing to your issues. It's "side" (actual) effects include agitation, nervousness, anxiety, insomnia, among many other things - (and these effects are considered common) -

https://en.wikipedia.org/wiki/Fluvoxamine

The Luvox might also be affecting your sleep and dreams - google Luvox and nightmares.

I second the idea of meditation for calming your mind. You've gotten some really good tips above.

 

[PracticingAcceptance]

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

 

[Wayne]

Hi @bearfan,

I'm sorry to hear how difficult things are for you. One simple thing that works for some of my overstimulation is to take Tylenol 4 in small quantities (1/4 tablet). I take that about 2x / week, and it seems to give me a fairly good bit of relief for 1-2 days. I don't take it more often, because I don't want my body to become dependent on the codeine. -- Wishing you the very best!

 

[jesse's mom]

@bearfan , I go through times like you are describing. I have gotten much better. I am still mostly in bed and in my room where I can be silent. Meditation was a huge part of calming many aspects. Howard is very good at describing things and he is spot on.

I do a fast little meditation where I focus on a part of my body that does not hurt. These places are like my toe on my left foot. Then I try to breathe into my toe. I also breathe through one nostril with one breath in then the other nostril on the next breath. Somehow this finding the breath is very calming and when I was on a monitor I could see my blood pressure react to these exercises.

I am no guru, but these things can help.

If you are not taking chelated magnesium, that may help you. It has helped me greatly, over time. I take it in two forms, one in oral pills, the other is one I can spray directly on muscles that are twitching and cramping.

I can talk with my family some, about a 20 minute limit. I can watch movies on my TV in my room now, but only in I have the volume control in my hand. I still live with blackout blinds on my windows, but can tolerate the door open on a pretty day for hours. I love to watch the birds and squirrels!

I sit up in bed and type now, although I rest during drafting a long post and it will take me more than an hour to write as much as I have just now. If I did not have spell check you would never be able to read it!

In close I will say that the aggressive rest therapy that my body demanded was and is the only way I have found to get better. Listen to the people here on the board as much as you can. We are right there with you at times, it gets better for most of us, it really does!

 

[kendonoghue]

Clonidine, and guanfacine have really helped my hyperadrenergic POTS/CFS.

I'll sometimes use pregabalin or acamprosate to further try and diminish the overstimulation via the GABA pathways.

Hang in there.

 

[bearfan]

Just wanted to check in. I’m in a much better place than when I originally posted. However, there’s still been a lot of suffering and struggles. I’d say I’m only at 15% max functioning. But it’s better than where I was. I thought on those days that I was gonna have to end my life. I really buckled down and suffered hard but made it through.

I have those better moments and those really hard moments. Like one poster said, I’m learning to cherish the better moments and ride the wave of the really rough moments.

Also I would like to say I have done some research, and I don’t meet the criteria for CFS. I really only have sensory issues.

I’d say my most probable diagnosis is a bad case of post concussion syndrome. I’m seeing 2 neurologists next month, one who specializes in concussions. And though I have tested negative for Autism Spectrum, I think I could have some and it was made worse by concussions.

Thanks everybody. Really thanks so much.

 

[Rebeccare]

Just wanted to check in. I’m in a much better place than when I originally posted.

I'm so glad to hear it--I had worried about you. I'm sorry that you're still suffering so much, but at least things have gotten better.

And though I have tested negative for Autism Spectrum, I think I could have some and it was made worse by concussions.

Remember that autism is a spectrum, so you can't be positive or negative. Just about all people have autistic traits to some degree, even though for most people those traits don't affect their lives strongly enough to merit a diagnosis.

I’d say my most probable diagnosis is a bad case of post concussion syndrome

That definitely could be contributing to the problems you've had. I do hope that the neurologists are able to help you. In the meantime, rest your body and your brain.

 

[jesse's mom]

So glad you are feeling a little better!
No matter what your diagnosis is, I am glad you posted and kept us in the loop!
All the best!

 

[Howard]

I'm glad to hear that you are heading in a positive direction.

I have many autism characteristics myself, they just never seemed to come into play until after being completely drained of all energy with this illness. As I've mentioned before, mindfulness meditation has helped a great deal.

Good luck and let us know if they find anything out!

 

[Stretched]

My sleep disturbances are really bad. I’m having a really vivid dreams. I have points where I don’t know whether I’m awake or asleep. I’m getting some sort of sleep paralysis. I’m getting sleep hallucinations.

Sounds like your system could use a jolt. Ask your doctor if you can have Zoloft for equanimity, Diazepam for systemic calming, and Ambien for rapid onset of sleep. These would likely help.

 

[Wayne]

I’d say my most probable diagnosis is a bad case of post concussion syndrome.

If you have access to HBOT therapy, you may want to consider it. It's been used extensively for all kinds of brain injuries, from strokes, concussions, aneurysms, closed head injuries, etc. -- Best...

 

[bearfan]

Just figured I’d update, even though this is off the topic of the thread title. Lots of stuff has happened. Sigh...lol

My sensory stuff is probably about 5-10% better than when I posted last. So slow improvement there at least. Even typing this on my phone, but head still feels terrible. Getting more headaches compared to the classical brain fatigue. All in the same spot too. Right in the middle of my forehead.

I saw the neurologist and it was actually a very good appointment. I’ve had a lot of terrible experiences with doctors so that was a welcome surprise. He said he did not think I had PCS and thought there was something more. He did a full neurological exam and I had something pop up. Hyperreflexia and/or clonus is what he called it. He said I need to get 2 MRIs, one of my neck and one of my spine. I even pressed him if they were necessary because of the expense and he insisted they were. So scheduled to get those soon.

I also saw a cardiologist because my PCP said I need to after he looked at my previous heart rates during an unrelated visit. He also took a standing/laying heart rate and blood pressure. He said I needed to wear a heart monitor. I wore a holter monitor and my median heart rate was 99. Saw a cardiologist and what do you know. I have POTS. Officially diagnosed.

But the biggest breakthrough is that my Mom called a specialist in Chicago. During the time the weather was freezing. Luckily someone canceled in the morning the next day because of that weather. We got that appointment. Thank god, it was either that or he was booked out way past summer. He’s a neurologist that specializes in nervous system disorders and other complex conditions.

Saw him for an initial appointment and gave him a run through of my history and symptoms, and he said I have autonomic neuropathy, which I guess maybe is fancy for Dysautonomia. He said he thinks POTS is only a piece of the entire pie. Would make sense too, considering I would assume that my concussions threw off my nervous system. I don’t have the typical symptoms of PCS. But I do of autonomic dysfunction.

I’m scheduled to get autonomic testing late in March. I’ve found some Dysautonomia groups which has been nice. I don’t meet the criteria for CFS because I don’t have physical fatigue. So, technically this isn’t the right website for me to be posting on now lol. I guess I’m starting a new phase of this journey. Fingers crossed for some positive outcomes.

Only other thing going on is I seem to have some sort of Chiblains type condition going on with my toes on both feet. All doctors I’ve seen are perplexed. They are red on the upper half, cold, peeling, and hurt really bad to the touch. Whereas my bottom half of my toes are normal. Also scheduled to get an ankle test idk what it’s called, but will test the circulation in that area.

Once again, I sympathize with all of you, no matter your condition, as I believe I’ve come to know what true suffering is really like, and having made it through a lot of that, along with the still persistent tough daily grind.

Thanks all. Wish you all the best. I’ll still look at all replies and keep updated someway, because all of you are veterans of chronic illness, so we have that in common now. Lol

 

[invisiblejungle]

Just figured I’d update, even though this is off the topic of the thread title. Lots of stuff has happened. Sigh...lol

My sensory stuff is probably about 5-10% better than when I posted last. So slow improvement there at least. Even typing this on my phone, but head still feels terrible. Getting more headaches compared to the classical brain fatigue. All in the same spot too. Right in the middle of my forehead.

I saw the neurologist and it was actually a very good appointment. I’ve had a lot of terrible experiences with doctors so that was a welcome surprise. He said he did not think I had PCS and thought there was something more. He did a full neurological exam and I had something pop up. Hyperreflexia and/or clonus is what he called it. He said I need to get 2 MRIs, one of my neck and one of my spine. I even pressed him if they were necessary because of the expense and he insisted they were. So scheduled to get those soon.

I also saw a cardiologist because my PCP said I need to after he looked at my previous heart rates during an unrelated visit. He also took a standing/laying heart rate and blood pressure. He said I needed to wear a heart monitor. I wore a holter monitor and my median heart rate was 99. Saw a cardiologist and what do you know. I have POTS. Officially diagnosed.

But the biggest breakthrough is that my Mom called a specialist in Chicago. During the time the weather was freezing. Luckily someone canceled in the morning the next day because of that weather. We got that appointment. Thank god, it was either that or he was booked out way past summer. He’s a neurologist that specializes in nervous system disorders and other complex conditions.

Saw him for an initial appointment and gave him a run through of my history and symptoms, and he said I have autonomic neuropathy, which I guess maybe is fancy for Dysautonomia. He said he thinks POTS is only a piece of the entire pie. Would make sense too, considering I would assume that my concussions threw off my nervous system. I don’t have the typical symptoms of PCS. But I do of autonomic dysfunction.

I’m scheduled to get autonomic testing late in March. I’ve found some Dysautonomia groups which has been nice. I don’t meet the criteria for CFS because I don’t have physical fatigue. So, technically this isn’t the right website for me to be posting on now lol. I guess I’m starting a new phase of this journey. Fingers crossed for some positive outcomes.

Only other thing going on is I seem to have some sort of Chiblains type condition going on with my toes on both feet. All doctors I’ve seen are perplexed. They are red on the upper half, cold, peeling, and hurt really bad to the touch. Whereas my bottom half of my toes are normal. Also scheduled to get an ankle test idk what it’s called, but will test the circulation in that area.

Once again, I sympathize with all of you, no matter your condition, as I believe I’ve come to know what true suffering is really like, and having made it through a lot of that, along with the still persistent tough daily grind.

Thanks all. Wish you all the best. I’ll still look at all replies and keep updated someway, because all of you are veterans of chronic illness, so we have that in common now. Lol

Hi Bearfan, can you tell me the name of the doctor you saw? (I live near Chicago).

Thanks!