Fatigue - ABI - Depression - antidepressants

[catrabb1t]

Hi everyone

Autumn is here. Hope you are enjoying the changing colours around us.

My level of fatigue is hard to manage some 20 months after surgery even with the pacing strategies which i have to do. In geberal, I tend to get drowsy/sedated on medication. I came off the anti seizures (they had me sleeping forever more) then some months later I reduced my dose of anitdepresseant because the fatigue still ruled my life and I fit very little in to a day and I sleep a lot.

I defintely see a pattern with cognitive exertion. I suffer with fatigue (and head heat/body heat) when I engage my brain, that applies to all things but it is harder hitter with new things like new admin processes. However, I had severe depression before my surgery so the situation is looking like that is on the cards too. The thing is I do not recognise having depression because I am naturally a positive thinking person, however if you look at my behaviours I ressemble a depressed person. I understand there is an overlap between AQI and depression and it is hard to work out....

I have recently stopped taking my antidepressant by weaning off over a long time to ensure no side affects but I had already lowered the dose to see if fatigue levels improved (they did not) and weaning off went well.

I am now in a situation where I think I need to speak to the GP about possible severe depression and the possible need to try another antidepressant. In my life I have had 3 types of antidepressant, and had to stop all of them for feeling sleepy. Two of them were years before brain bleeds. I do not want to be on them because of the risk of increased drowsiness and other side affects. I have got my anxiety under control and I really do not want anxiety levels rising through side effects, also nausea and other not pleasant things.

I have read quite a lot of Cat's posts about her experiences of trialling and testing many different types over a 12 months period until finding one that matched her psyiological needs and made a good different quickly. This is what makes it tempting to try another... If I do have severe depression then it is not going to get better by itself... I either hibernate forever more which is not fair on my faily and my overall health is getting impacted on negatively.

Then I have the obstacle of speaking to a GP who will not know me, I have no knowledge of their skills in this area with an ABI in the mix and it is exhausting thinking of communicating with them.

I googled neuropsychiatrist because I know they have expertise in the drugs and the brain...nothing came up locally and I already know they will cost too much than I can afford. Plus how many times would you need to see them? If they are monitoring me then is it worth the money because a GP can do that based on the symptoms I tell them....

I dont really know why I am writing this now...! Except, it is confusing me.

If you're reading it and you have anything to say please do.

🐈‍⬛🐰

[catrabb1t]

Paintinggirl your post from 2 years ago came up at the side and you gave some interesting info on this subject. How are you now?

You wrote::

"I think I read that current stress at the point of having MTBI might predict worse symptoms. (I truly didn't see it as such, but I commuted and had a fairly high pressure job at the time of my accident, used to totally thrive on pressure.)

neurosciencenews.com/hcn-an...

My consultant said that brain injury causes a disturbance in the white matter, as does depression. The brain can't tell the difference, but antidepressants taken over a long enough period of time, clear up the disturbance in the white matter in both cases. But he did warn that I could be more prone to recurrence of depression after the TBI."

[CW2002]

I’m not sure what to say about what you’re experiencing but I’m the exact opposite of how you are. I have stopped taking matazapine as it wasn’t working anymore no sleep and no feelings like you’re just an empty husk. Phoned the doctors and told them they gave me a higher dose. I forgot I had done the same last year and it had the same effect I was like a zombie. So I have stopped taking them. No magic pill for me again until next time. It’s like going round in circles same thing each time. 20 plus years of it. I have spoken to the doctors since and they have offered iapt service again that’s it same problem same solution Same-Same. I have tried various other medication and non seem to work. Last year i got away on holiday and it went away I also i exercise run 40 miles a week this is my magic pill feel ok after normal. Problem is I go to bed don’t sleep then have to reset the next day to feel ok again I just am not able to sleep or tire myself out.

Sorry I can’t help you. 😔

[catrabb1t in reply to CW2002]

my god, we share the same process to getting help but our outcomes are opposites. You achieve a lot but it is hard for you to manage the insomnia. Interesting that it went away when you was on holiday. Many people find their sleep improves away from normal life. That seems to have happened for you. I could not work with the iapr service because their apporach did not meet my needs at the time. They didnt understand how the brain injury was affecting me. Im not in the same place now so I could give them another try...

[CW2002 in reply to catrabb1t]

I have a quote on my wall change your thoughts change your world, I don’t think that works as try to think about other things to change how I feel. The running does it for me though. Maybe it should be change your environment change you mind as it works for me.

Have you seen a psychiatrist?

[Hidden]

Hi Catrabbit, as you had a history of depression before your brain injury have you ever thought of finding out what makes you depressed? There may be other solutions for you. Ask your GP to send you to a psychiatrist to find out the underlying causes.

[catrabb1t in reply to Hidden]

yes they are known. There isnt a solution sadly. They relate to my teenage daughter who has significant mental health problems and is mainly housebound. I was (am) her carer for several years and she had very poor mental health. She does not engage with third parties easily so support in the usual places which we/she qualifies for often does not work out. This has put a lot of strain on our family. The lockdowns and covid had a terrible affect on her which lead me to lose hope. I reached breaking point prior to head injury. This is why my rehab has been more complex. Thankfully the rehab team supported me over 9 months but that team are no longer in my life. You can see why I do not feel confident in a GP helping me with this... I suffer so much from cognitive exertion now and with the depression on top with possible side affects from meds, it feels daunting trusting a GP who does not know me. Unless I am a lucky one and have a pill that suits me and helps me.

[catrabb1t in reply to Hidden]

but yes the mental health support is what suits me. I will talk to the GP about that 👍

[Leaf100]

Hi Catrabb1tHave you tried calling Headway?

Perhaps they can clarify if there is a neuro psychiatrist you can see somewhere and if it will cost anything.

I live in Canada so if a psychiatrist works for our equivalent to your NHS then we don't have to pay, and those with deep pockets can pay through some private programs where the psychiatrists have opted out.

It can be tricky to tell the difference between depression and brain injury. People with brain injuries are generally sensitive to medications (a little, and I mean a little...can go along way...for me pediatric doses are sometimes too much.. or... they don't have the expected effect)

For that reason I feel a good neurophysciatrist might be able to help you...and the other option is to try to find a doctor who has a brain injured relative and an interest, so is bi literate, or at least open minded.

People were telling me I was depressed but from my point of view I was either processing very slowly or too busy coping to react the way they thought I should. The penny would drop 2 weeks later or 2 months later.... or ...

Have you ruled out basics? Like taking vitamin d3 ? Most of us don't get enough sun when we are inside a lot, or it rains a lot outside, especially this time if year. Maybe your gp could check for other possible levels that are low. I mention d3 as it helps a lot if things, including mood, and it is very cheap to take. (Of course always consult with your pharmacist and/ or doc and /or other health pro...because of course I am not giving medical advice... just an example,)

Also try your pharmacist - they sometimes have some great ideas and also may know about community resources.

I hope you get some relief soon,

Leaf

[catrabb1t in reply to Leaf100]

you know leaf, you are so in tune with me whenever i post.

Thank you. Yes i will ask to be referred to a neuropsych so let's see. I fact you have prompted me to firstly ask this question of the neuro rehab team I used to work with, Perhaps they can make a referral.

The reason for my intial appointment was to ask for blood tests for the possible deficiencies - you read my mind. I had a blood sugar test but the nurse could not add on thr addiotnal tests and i need to speak to a GP. I said that the fatigue cant be assumed and we must investigate. It is since then I have decided to speak to them about possible medication. I will have a list so will have to write it all down otherwise I wont give them the info. I get my blood sugar results soon and am worried i have type 2 diabetes because of lifestyle changes.

You said "People were telling me I was depressed but from my point of view I was either processing very slowly or too busy coping to react the way they thought I should. The penny would drop 2 weeks later or 2 months later.... or ...". That is how I feel about it too! But I know there are other complications too (home life responsibilities and severe depression before head injury).

[catrabb1t in reply to Leaf100]

I will talk it through with Headway before I speak to GP - thanks

[ZeeandMe]

Hi, I'm sorry to hear you are struggling with the fatigue and depression. I'm in a similar situation to you. I have ABI and I'm 21 months post operation. My previous (prior to surgery) depression is not affecting me at present but like you the fatigue is and I also get extreme sweating when using my brain. I see NHS neuropsychiatry for other chemical related issues mainly my sleep but if I can remember correctly it's slightly different from them having a permanent place in local hospitals (probably because of how specific their field is) but they will meet you both in your home and in your local hospital to trest you. You would need to talk to your Gp and explain the problem and that feel a neuropsychiatrist would more equipped to deal with your type of depression because of the brain injury than a community based mental health team and can you please be referred neuropsychiatry. If you gave any questions please feel free to ask me (reply) on here and will try to help. Take care.

[Leaf100 in reply to ZeeandMe]

You are right on target, Zee - people with brain injury do not do well in the mental health community - our needs are different and the solutions proposed and treatment styles are almost always exactly wrong for us.It is such an important point , I am so glad you brought it up.

Leaf

[cat3]

If only there was a test for compatibility with antidepressants there'd be no downside to SSRIs. Medication is easily tailored to treat other organs but, owing to the brain's complexity, adjusting its chemistry remains trial & error. Such a pity.

So only by trialing each one for 4-6 weeks can we find 'The one'. It's disappointing (and a pain) when first attempts are unsuccessful but, through perseverance, quality of life can be massively improved..

Perhaps trial others alongside Winter hibernation ? The right one shouldn't cause daytime sleepiness but should help you sleep at night.

Seriously hoping you'll get there soon m'love ; depression is a dreadful business... Cat x

[Painting-girl]

So sorry to hear about this, Catrabbit. Cat's right , the right antidepressant can be a game changer. My neuropsychiatrist was brilliant, much better than the non brain injury specialist neurologist. Though a neuropsychologist might be useful at picking apart what's injury and what is depression though - and providing practical strategies to cope with the injury.

There's so much overlap between the symptoms of BI and depression though, its hard to know what's causing what.

By the way, get your vitamin D levels checked, because low levels make you fatigued too.

[Shackleton1 in reply to Painting-girl]

Hi Painting-girl

Am interested to hear of your thoughts on the right antidepressant. I was on escitalopram for 18 years. It worked fine until I had an accident and suffered a TBI 11 months ago. I've been depressed pretty much since then, with doctors thinking the accident ceased the effectiveness of escitalopram. Am now on venlafaxine and not sure its really working. Plan is go back to escitalopram as it used to work - can it again?

[Painting-girl in reply to Shackleton1]

I'm afraid I don't know Shackleton, I think there's a bit of trial and error with antidepressants though. Whose doing your prescribing? After a brain injury the mantra to bear in mind is 'start low and go slow'. Start on a low dose and if you're not getting side effects, gradually increase the dose, and then persevere - my neuropsychiatrist wanted me to stay on duloxetine (which also has a pain relief effect) for a year or so, as there's a theory that it is more than just something to help you cope, and that it does have an actual therapeutic effect on the brain's white matter after TBI. Basically the way he described it was that depression causes a disturbance in the white matter, and so does a TBI, and the brain can't really tell the difference between the two. But that an antidepressant does actually clear up the disturbance if given long enough. It's very difficult to work out what effects are depression, and what are the result of the TBI though, as there's a lot of overlap in symptoms. Taking duloxetine did stop me feeling suicidal though.

What happened to you?

[Shackleton1 in reply to Painting-girl]

Hi Painting-girl. Thanks for your reply. Glad to hear the duloxetine has had some significant benefit. A psychiatrist has been looking after my prescription. He raised the dose of venlafaxine pretty quickly but looks like it was a bit too much too soon. So maybe your mantra "start low and go slow" seems valid. The problem is that this spell of depression has been going on for months and I am very tired of it. Just want it to stop asap so I can resume my life as it was before the accident. That was a fall in a squash court when playing racquetball and hit my head against the court wall: fractured skull, brain bleed, contrecoup, subdural haematoma and a broken collar bone. All in the space of about 5 seconds. Followed by 6 weeks in hospital. I don't recommend it

[Painting-girl in reply to Shackleton1]

That's quite a TBI Shackleton, so sorry to hear that. Mine was pretty mild by comparison, no bleed, but I'd had one before with bad symptoms, but the first time round it cleared up in a couple of weeks. This time has been much more of a problem. I was anxious and suicidal after the TBI ( on top of all the other weird effects ) The duloxetine, and being under the care of a specialist post concussion team helped - the reassurance that what was happening to me was normal after a TBI made a vast difference.

Have you got a neuropsychiatrist or just a psychiatrist? Anecdotally, on here, they seem to differ in their approach. Plus a neuropsychologist can be really good value. They can test and see what areas you might have issues with, then help you develop practical strategies to cope. Have you talked to the Headway helpline yet ? They're really good.

What form is your depression taking?

[Shackleton1 in reply to Painting-girl]

Hiya :). Just have the psychiatrist. Sadly I seem to have the full gamut of symptoms commonly considered to form depression. Rather than list those, I came across this little video clip which I thought very descriptive in a creative way and sums up how I'm doing

youtube.com/watch?v=XiCrniL...(Not working as expected?)

My main issue is having a load of negative thoughts which I really struggle to deal with...

Shackleton

[Painting-girl in reply to Shackleton1]

It's really tough dealing with negative thoughts. I think I'm nore prone to getting stuck in my thought processes since the MTBI, it's hard to change sometimes, I think it's probably because my executive memory was impaired, so decision making is harder sometimes, and apparently I have a heightened response to stress too. I'm more aware of it now though.

That's a really good video clip to share Shackleton, thank you. Glad you have a psychiatrist, think about getting a neuropsychologist you get on with - the neuro people come with a different approach because they are able to allow for the brain injuries. Might be worth talking it over with the Headway help line when you feel up to it?

Take care