New member with possible dysautonomia

[tor]

Hi,

I am a 50 year old male from Oslo, Norway. I am about to undergo evaluation for dysautonomia and related issues.

I found this forum when I searced the internet for autonomic dysfynction and interstitical cystitis. I suffered from IC for many years, and in December 2018 I had a cystoprostatectomy where the surgeons removed my bladder and created a neobladder. The surgery was a great success and I got my life back after a decade of increasing, unbearable pain.

However, after the surgery I have not recovered my former energy and I struggle with a number of symptoms which are causing problems:

• severe fatigue, I often have to lie down for hours
• tired when I wake up in the morning
• difficulty swallowing certain foods, and regurgitating food for hours
• massive armpit sweating during the day
• dizziness when standing up (but not all the time)
• brain fog, problems concentrating
• tiredness in my shoulders
• mood swings and anxiety / panic attacks
• post-exercise fatigue, things get much worse if I work out (I like to exercise with a bicycle on a turbo trainer)
• «clumsiness» - I sometimes make erratic motions with my hands which cause me to throw things on the floor etc

I work full time in a consultancy. I am a manager working with sales, strategy and mentoring, and these days I do all my work from home due to Covid-19.

My health issues are causing increasing stress because I am finding it hard at times to keep up with the demands of my work. On the other hand the stress causes anxiety and I spend too much time ruminating and worrying about the future.

I decided to join these forums to do some research and prepare for the evaluation I will be going through soon.

 

Edited February 1, 2021 by tor
Added the bit about being clumsy

[dancer65]

Hi 

sorry to hear you so unwell and struggling to work . My advice to you would be to keep a dairy of symptoms whilst both resting and during activity, BP and Hr readings to take with you , I found this really helpful,  especially with the brain fog as my mind would go blank and I use to loose the ability to make comprehensive conversation during consultations . I always had my hubby with me to support me , but of course with COVID that may not be allowed. 
A poor mans TTT can also help give you a picture of what’s going on . 
I wish you all the best , there is hope many of us do improve with lifestyle changes , finding the right meds but it takes time and requires patience . This forum is great for support. I learnt more here on self help than anywhere else and five years on I’m still learning and improving . 
Take care . 

[Pistol]

@tor - there are different types of dysautonomia and the symptoms you describe could be caused by some form of dysautonomia. Many dysautonomias have worse symptoms when standing up - orthostatic hypotension causes a drop in BP and POTS an increase in HR, all upon standing. That is why a Tilt table test ( TTT ) often is used to diagnose it. As @dancer65 mentioned - it is helpful for the doctors to know what triggers your symptoms, if standing up makes it worse, 

I can understand how stressed and anxious this all must be for you. I hope the autonomic testing will bring answers. Best of luck! This forum is a good place to ask questions and share experiences with other dysautonomia sufferers, please let us know how the testing went!

[Pistol]

18 hours ago, tor said:

post-exercise fatigue, things get much worse if I work out (I like to exercise with a bicycle on a turbo trainer)

@tor - when re-reading your post I noticed that you mention this. In dysautonomia - especially when suffering from fatigue and exercise intolerance - it is important to balance rest and activity. If the exercise causes your symptoms to worsen it is probably too much exercise or the wrong type of exercise. Although targeted exercise is essential in dysautonomia overdoing it will make it worse. We need to listen to our bodies and plan our activity around our tolerance. In general it is not good to spend long spans sitting being inactive and then exercising a lot all at once. This can contribute to the fatigue. In general it is better to get up several times throughout the day and then exercise up to 30 minutes three times a week ( mild aerobic exercise ). If before onset of your symptoms you exercised certain times a day it may be different for you now. We do better when exercise is preceeded and followed by rest, and the exercises should be timed to NOT cause symptoms. In other words: if you can use your bike for 10 minutes and then it gets too much you might want to only exercise for 8 minutes and stop, to avoid intolerance. Then you can SLOWLY increase to tolerance. Using a stationary bike is often a recommended exercise for dysautonomia but you may not be able to do as much as before. 

Also - surgery ( as your bladder surgery ) can often cause dysautonomia, especially of the surgery caused prolonged inactivity in the recovery period. You may need to be more gentle and patient with your body! 

 

[tor]

Thank you all for your thoughtful replies. I am waiting for the tilt table test and I look forward to getting some results.

I am slowly realising that I will need to adapt my lifestyle, or rather my expectations of what my lifestyle should be.

My main hobby is playing guitar. I have played since I was 11 years and even have a bachelors degree in guitar performance. But I have found it increasingly hard to keep practicing guitar regularly. My shoulders and arms are too tired and I am unable to concentrate the way I need to. It is very frustrating.

[tor]

10 hours ago, Pistol said:

In general it is better to get up several times throughout the day and then exercise up to 30 minutes three times a week ( mild aerobic exercise ). If before onset of your symptoms you exercised certain times a day it may be different for you now. We do better when exercise is preceeded and followed by rest, and the exercises should be timed to NOT cause symptoms. In other words: if you can use your bike for 10 minutes and then it gets too much you might want to only exercise for 8 minutes and stop, to avoid intolerance. Then you can SLOWLY increase to tolerance. Using a stationary bike is often a recommended exercise for dysautonomia but you may not be able to do as much as before. 

Also - surgery ( as your bladder surgery ) can often cause dysautonomia, especially of the surgery caused prolonged inactivity in the recovery period. You may need to be more gentle and patient with your body! 

 

Thank you @Pistol, this is really a new approach for me when it comes to exercise. I have taken a week off training now to recover and then I will start with baby steps.

I was not aware that surgery could cause dysautonomia. That is very interesting.

[Pistol]

4 hours ago, tor said:

My main hobby is playing guitar. I have played since I was 11 years and even have a bachelors degree in guitar performance. But I have found it increasingly hard to keep practicing guitar regularly. My shoulders and arms are too tired and I am unable to concentrate the way I need to. It is very frustrating.

@tor - it is like that for most of us. However - you do not have to give it up completely. I have learned that all activities ( even the ones we enjoy ) rob us of energy, whihc then will lead to us feeling drained afterwards. So I sped my days according to the energy I have and how I should household it. So if you want to exercise you might want to give up something else, maybe making phone calls or playing guitar. And if you want to play the guitar then something else has to give ( I like to skip washing the dishes, but I don't always get away with it 😉). And sometimes I just go with the flow and do whatever I can when I can and then stop doing anything once i am spent. But learning how to household your energy takes a while to learn, so just simply go by what your body tells you. If you start to feel tired or spent then stop - do not push yourself. This will without fail make your symptoms worse. I pushed myself to the extreme b/c I lived in denial and this made my POTS a lot worse. Now I am disabled and have the luxury to only do what I can when I can, and I can even stay in bed on really bad days. Having the freedom to listen to my body like that has made me a lot more stable.

One word of caution: you will become quite unreliable if you listen to your body. For many of us that have dysautonomia planning anything is difficult b/c we can never be sure if last minute we will be able to go to that appointment or if we have the energy or are too sick to attend that event ... and sometimes we arrive somewhere and have to leave right away. This is a sad and frustrating reality of having to live with our limitations. 

[tor]

A brief update. I have been to EEG and MR (of the brain) and nothing was found (as in, everything seems to be in perfect order).

I am currently on 50% sick leave until further notice. Since I work from home during the pandemic, I begin work in the morning and do as much as I am able to. I then tend to spend a lot of time in bed unable to do much (I treated myself to some quality headphones a few weeks ago, so I listen to a lot of music). I go for 30 minute walks every day, that is about the limit of what I can handle right now.

I have been scheduled for a tilt test in April.

The worst part of this is that I my system is stressed quite easily. I experience a lot of panic attacks and I have days with quite serious depression. My doctor is referring me to a psychologist to get some mental relief.

[Pistol]

4 hours ago, tor said:

The worst part of this is that I my system is stressed quite easily. I experience a lot of panic attacks and I have days with quite serious depression. My doctor is referring me to a psychologist to get some mental relief.

I am so sorry @tor that you are feeling like that. I too became very depressed when I became unable to work. My doc started me on a SSRI ( I take Escitalopram ) years ago, it is not only helpful with depression but commonly is prescribed for POTS as well, b/c it balances neurotransmitters in the brain, specifically serotonin. It helped me get over the hump. 

 

4 hours ago, tor said:

I begin work in the morning and do as much as I am able to. I then tend to spend a lot of time in bed unable to do much

Yes, that sounds pretty typical for POTS. It is important that you do not overdo it, but rather listen to your body and stay within your new limits. I ignored my symptoms and therefore made POTS much, much worse, to the point of fainting and having seizures all of the time. The sooner you can adjust to the increased demand for rest and avoidance of stimulation the better you will feel. Just don't compare yourself to the "before POTS" You - it will make you more depressed. Hopefully after the Tilt test you will have a diagnosis and can find a capable physician to help you out.