Taking a medication called roaccutane 20years ago has ruined my life. It has damaged my brain and i’ve been living with these awful side effects all through my 20s and 30s. I’m utterly fed up with chronic head pains, scorched sensations, cognitive problems, brain numbness/deadness, ringing in my head, visual snow & glare, all because of that f***ing medication given to me by the nhs.
i should be waking up looking forward to the weekend but am debilitated by these brain problems and just can’t cope with it.
I don’t want to kill myself (although have lots of ideations), but also can’t live with this damage, so what do i do? i’m just want to live a happy life without this, and to make things worse, no one seems to understand. Haven’t got anyone around me who i can talk to about it. Have given up on trying to seek help from doctors, who seem to know nothing and also don’t listen.
Always been a happy, kind person interested in life and nature but these problems are pushing me into a dark desperate place.
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Dann2
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It worked for me and others on this site, but it did not work for others. There's no harm in getting tested, because if it does work for you it will change your life.
I've heard some bad things about isotretinoin (roaccutane). Reports suggest it can in some cases adversely affect hormone levels with disastrous results. Unbalanced hormones can cause mood swings, depression and a host of other unpleasant and very physical side effects.
Here I must point out that I am not medically trained. I say this because your description of your symptoms immediately suggests to me that you're experiencing classic migraine. Migraine can be caused by hormonal imbalance, along with a whole host of other triggers, ranging from food intolerance to cerebrospinal fluid pressure dysfunction. There's a heck of a lot in between those two.
Not all migraine is painful. Some migraine is complex. Some is continuous. I've had complex without pain but with several of the symptoms you describe. Visual disturbance, strange nerve sensations, loss of one-side function, brain fog, loss of speech, incapacity to think clearly - and that's not an exhaustive list either, it's just what I experienced for decades. At first, it frightened me. Migraine can mimic stroke symptoms.
My suggestion to you is two-fold. First, and if you haven't already, I think you could do with a referral to a headache clinic. These are usually run by a neurologist. They are the migraine specialists. Ask your GP for a referral. You might have a long wait; you might not.
Ignore the clichés and silly, heroic assumptions about loving/supportive partnerships! Focus on the diet and exercise stuff. It's a pointer regarding re-balancing and increasing feel-good hormones. Pick and choose what might work for you and ignore the duff stuff.
Finally, I recognize your anger about being mis-prescribed something from years ago. I think it might benefit you, as it did me, to try and move on from anger. Here's something to think about if you are indeed experiencing migraine. This condition can start at any age and be triggered by a variety of things. It could be the result of taking roaccutane; it might not be. The onset of migraine and taking prescribed roaccutane could be entirely co-incidental.
I think what you're in need of is professional, sound, robust advice and a sensible way forward. I hope you find both very soon!
Okay Dan, take things one minute at a time and try to keep calm.
Take some deep breaths and try to blank out all thoughts. You could do with trying to get into a mild meditative state until your thinking clears.
I think you could do with talking to someone as a matter of urgency, whether or not you've been down this route before. I recommend you call 111 and select option '2'.
Then, if you haven't already had a complex scan, I think you might benefit from a comprehensive MRI venogram of your head/neck to make sure that your nerves and blood vessels, particularly outflow through your internal jugular veins, are all working properly. You need a referral to a neurosurgeon to obtain this kind of scan. Your GP might help with this. It needs assessment by an experienced interventional neuro-radiologist. They are best placed to find anything amiss.
They might find nothing, but that doesn't mean they shouldn't be looking. One important thing; does your head feel worse when you change position? Is it better upright or laying down, supine or prone? If it is positional, it is very important that you tell the medics this when you speak with them next.
I hope this post is of more use to you and apologize if it's just repeating things you've already tried/been there/done that. I know how frustrating obtaining a sensible diagnosis and the right support can be. I hope you get both sooner rather than later.
hi Dan welcome to this group .. you will find lots of people with knowledge of brain damage from very different experiences .. I don’t have the knowledge that others do but have found this group in the last 2 years more help than anyone else .. I do however understand the despair of dealing with complex mental health issues from my life before I had my accident And after my accident and it is horrendous to deal with from whatever angle you come from ..
You undoubtedly need help with the medical side ( you will get good advice on here where to try) and emotional you also need help to deal with this .. just joining this group is a massive step forward .
I’m not sure if you have received counselling .. but it does work .. it’s no miracle cure it hay help you find a better way of dealing with the situation you are in .. if you have had it and it didn’t help try it again as not all counsellors are good / have the correct treatment for you or their approach is wrong for you .. they very drastically and also use many different techniques ..
I do know this from personal experience And wouldn’t be here now without leaning / talking about many different issues including brain injury …
From what you have written being able to talk to people who actually understand how difficult life can be with our wonky brains Will help you not feel alone .. help is out there and hopefully chatting on here will help you start your recovery .. Sue
thanks, is there a specific type of councillor that deals with coping with brain injury? i feel totally isolated with these problems and find it terrifying to talk about fully
I’m sorry I don’t know if there is a councillor that does just brain injury but any type of councillor would be good for you .. you said you find it terrifying to talk about it fully is showing that you need to talk .. a councillor isn’t going to change you medically But talking about how you feel , what has happened and how your life has been affected is something that will be having a massive effect on you . This doesn’t replace what you need from Drs and specialists in what has happened to you .. this will help you deal with the situation you have found yourself in .. someone on here said to you we are all on here because something went wrong .. for you the side effects of meds 😢 totally crap !!! For me I woke up in what felt like someone else’s body because someone altered the ladder I was about to step on and it collapsed … Drs do nothing but join my bones together and am waiting for another op in two weeks … that’s the short version … but mentally I could do something positive and counselling so one of the thing I did .. I knew this was the right thing to do as I have had to do it before my head injury with other catastrophic events in my life …
This is totally from personal used I would recommend any form of counselling CBT is one form but it’s not for everyone .. ring Headway’s for possible a help in finding the right counselling for you ..
I dosnt get rid of the crap but it does help you find a better way of dealing with it . Sorry for the crap word but I can’t find anything that suits the place we have all found ourselves in . Sue ..
I’m all good about the op I can’t wait … my only reason to say where I’ve been is to hopefully help you see that what ever has happened to you counselling will help .. Infact just talking about it to anyone helps . The old saying “a problem shared is a problem halved “ is so so true . Our problems in our head can destroy even the nice positive things in our lives .. sue ..
what things/ interests give u pleasure? Silly little things that don’t take much effort? Read, paint/ dawdle? Solitaire saves me when am down?! To sit with a pencil, paper and just doodle? No effort other than a hand and a few neurons?….have been down the road I’d counciling. Either long wait or not able to go on-line. Life is bloody frustrating!! Look for silly little ways to loose u time, write a book? Bo-one can read it but very therapeutic!! Mine saved me in my teens, rewrote it in hard times on later life!! Hope my waffle has been inspiring, oh wonderful tool to spite depression/ anxiety? SMILE to spite it?! Have half a working brain &xan still find silly pleasures!! Good luck, come back to this site whenever u feeling low, it helps me greatly
have read a lot about it already, thanks. it’s horrible and shocking and hugely upsetting. No professionals will touch the subject with a barge pole. that’s why i’m left totally on my own with it.
Hello Dann, it must feel horrible that this was a result of taking prescribed meds, and that you're feeling bad at the moment, we will all feel for you here because none of us chose a brain injury no matter how we got it, one day we were ok, and then we weren't, but with acceptance and support here we each try and get something worthwhile out of our days. Lots of good advice here, you sound as though you need emotional support as well though, so don't forget you can talk to the Samaritans at any time on 116 123 and that you can also ring the Headway helpline during office hours - perhaps give them a ring tomorrow?
Quite often we find GPs not that easy to get help from, so Headway might be able to point out what your options for support could be
Always feel you can ask for support and help in this forum too. Let us know how you get on.
thanks, i’m really scared about what’s wrong with my head. feel very isolated and not right, all the time. Always trying to act normal around others but i know i’ve got some awful things wrong. Don’t know how to feel better. head is ringing and on fire all the time.
Try and pick up the phone and ring the Samaritans and Headway for a start today, It's very hard to try and work out what to do when you're on your own. This is Headways number 0808 800 2244 - ask them what you can do, they've been brilliant whenever I've rung them.
It sounds a bit like you might have a migraine, which happens a lot after brain injury, and there are meds that can help that.
What help and support do you have like friends and family D? What is your situation at the moment?
sounds frustrating!! Been trying to come to terms with my new life, may sound silly but smile on the face of adversity!! May frustrate u even more to feel the corners of y mouth twitching?!!
speak to social services, they helped me greatly. Somewhere safe to meet new similar people. Was 20 year ago! Hope they can help, if not. This is a great support site!! Good luck, oh &smile to adversity!! Keep safe, chat soon ok!
Hi Dann2, sorry to hear about all that is going on for you and how alone and frustrated it has made you feel. I’ve been there - and I second Sashaming’s suggestion to call Headway’s helpline. I know that in itself can feel like you’re putting yourself out there and be having to tell the same story over again but several on here encouraged me to call them and I’m so glad I did. The consultant I spoke with at Headway was wonderful - they listened without judgement, they empathised and they helped point me in the right direction and gave me other options to think about that I hadn’t even considered. They were so supportive and I know that I can call again about anything worrying me.
I hope you find the help you need and wishes for the best future health possible.
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Exhausted (and really frustrated about it)
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Frustration / can't look at screens / fatigue
