I had a Hemmoragic Stroke in June 2020 caused by a ruptured AVM, had 3 neurosurgeries and spent 7 weeks in hospital, have balance, Vision and Speech problems. I am now at home. Although I had a good experience of physiotherapy when I was initially discharged I have had very little medical treatment since. I find Anger and emotion an issue but do not know how to deal with it. My GP wants me to medicate, I find the medication becomes a Sedation so refuse it. We are at an impass. I don’t know what to do?
2 Likes
@TimD
I understand you not wanting meds. I came off mine after about 6 months and refused to go back. Personally I think this decision should come from a neuro specialist.
Depending on how strongly you feel about the meds maybe you could try it for 6 months and then bin it if you don’t feel any benefit.
I still have vision and balance issues but found extra physio and light gym work helped. I went to knee recovery classes at the hospital!
Have you tried yoga? I need to go back and do more but can’t find a suitable class yet.
Best wishes Tim
1 Like
Hey @TimD,
I’m Merl a member of the modsupport team here on Ben’s Friends.
Firstly, Welcome to Ben’s Friends and well done you for identifying an issue and looking for answers. It took me a long time of fighting with myself before I identified I needed some help. I had a craniotomy, not for an AVM but for another type of growth. I was trying to get myself back to work, but my symptoms kept increasing and I was getting REALLY frustrated with it all. It was actually my wife who could see what was happening. I’d convinced myself I was building stamina, when in reality I was driving myself into the ground, but couldn’t see it. Asking for help was one of my better moves on this journey. Only wish I’d done so earlier.
I’m in Australia, so I’m unsure of the services available to you.
I understand that you have spoken to your GP. I’ve found GP’s can be great for your ‘normal’ medical needs. The sorts of things ‘Here, take a tablet…’ may help with. But I wouldn’t call anything neuro related as ‘normal’.
Have you tried the social worker at your treating hospital? Most hospitals have a social work team attached and they can often link patients with local services. Many of them have already established relationships with such services and this can make the process of accessing them a little easier.
There’s also groups such as Headway - the brain injury association | Headway that maybe able to assist in accessing services within your vicinity. I did a quick Google search of ‘Brain Injury UK’ and a few services popped up.
Look, this journey is not easy and anybody who tells you otherwise has never been here. We know this because we live it too, so come talk to us.
Merl from the Modsupport Team
1 Like
Tim,
Welcome! I’m trying to think about the anger and emotional side of things. It might be helpful if you could describe how these show themselves: sometimes there’s a medical reason for them and sometimes it’s more to do with the level of “change” that you’re being shoved through.
I’ve been very lucky because I’ve come out of the whole thing being very well but I think there are a bunch of friends here who are less well and when that’s the case, we often find ourselves frustrated, hacked off, about the loss of our capabilities, perhaps not being able to drive or coordinate or problem solve or any of the difficulties that remain. It is perfectly normal to be hacked off about stuff like that.
I’m no expert at how to help you get to a better place but being frustrated about a more difficult way forwards than you were used to can be a big part of it.
Do tell us a bit more about what you know about your bleed and where your AVM is/was and if you’ve got any idea what’s driving your anger or emotions.
Very best wishes,
Richard
1 Like
Welcome, Tom D.,
First of all, you deserve congratulations on your survival of a ruptured AVM. I survived one over 30 years ago. I knew how extremely blessed I was to have survived, but I too experienced difficulties with anger and depression. How could I not? My life had been changed by 180 degrees. I had been an active ICU nurse, now dependent on others to assist me. I suspect that you are experiencing something similar.
I agree with you regarding meds. They may be what you need to smoothing things out a bit. But, check with a neuro-psychiatrist first, and see what other modalities might be of assistance.
I wish you improvement in the coming weeks.
1 Like
Thanks for your reply. The decision to come off the meds was with the support of specialist medical professionals who monitored my progress. The initial decision came by a request from me. I was on Levitracetam (Kepra), given as a precaution while I was in Hospital. As i was experiencing severe mood swings after discharge from hospital my GP practice decided Sertraline would solve it (this was all done by telephone, no consultation) Even though I objected the effects on my Family had to considered. It turns out Kepra was not needed (i had never had a seizure) and rhe SSRI (Sertraline) was to combat the effects of the Kepra on my mood! I have had no review of any medication since.
1 Like
Thanks for the reply. I have had 2 different Psychiatric specialists involved during the last 4 years, they have helped me understand some of the issues I have, but I still haven’t fixed it! My biggest issue is one of inactivity and a feeling of inability. I cannot drive or do any work of any kind, I am so reliant on others (which I find very difficult) and I am having a huge negative impact on my Family (which really troubles me). I don’t want just answers, I need advice on how to deal with this, I am more than willing to do the work needed!
1 Like
Thanks for your reply. The issues i have appear to be on a cycle of between 12.25 to 13 hours. A bit random and unpredictable. The AVM occurred in the Cerebellum, the Surgeries were to relieve the pressure, fix the AVM, and finally fit a shunt to stabilise the pressure/fix. None of the procedures carried out have ever been discussed. Any information i have has been derived from my discharge notes and my own research/guesswork.
1 Like
My daughter’s rupture was also in the cerebellum and has left her very sensitive to noises. She was extremely angry and anxious. Zoloft has been very helpful For her.
1 Like
Thanks for the reply. How is your Daughter getting on now? I have an appointment with my GP in a few weeks. I cannot do anything Medically unless I have my GP’s approval first (very annoying) I know we will end up arguing about my treatment, but feel I have to start somewhere!
We are very fortunate with her recovery. It’s been 8 years now and she was 10 when it ruptured. She has come a very long way — it was a devastating stroke. She has worked very hard the last few years and now enjoys a lot of things that regular 18 year olds do — driving and a part time job. But she continues to struggle a bit socially and has difficulty with fatigue. Her mood is much better but she can still have low tolerance for people and gets annoyed easily.
I hope your treatment plan goes well. It’s always evolving for sure.
— Allison
1 Like