3 and a half years post stroke and I am getting intermittent bouts of light headed ness and really bad tinnitus. My head feels like it’s not connected to the rest of me ( strange feeling) I was wandering if anyone else has these bouts of dizziness (off balance) feelings.
Hard to describe but disconnected head from body is near the mark.
Regret that I cant say what causes it. Several have suggested that Citrizine might be a cause, but I have reduced the citrizine and no change. I will soon eliminate citrizine and, if the fatigue noticeably reduces I will be on here shouting.
Our ears do seem to get a pounding post stroke. Tinnitus is the pits. My friend gets some release by using sound eliminating headphones. Thats a small plaster on a large cut, but anything is helpful.
Hi, I just joined this forum to ask the exact same question. Your question has answered mine! Thanks. You describe it beautifully. I had a stroke 20 months ago and this feeling has come and gone throughout that time. Strangely, it helps to hear that others have the same experience. Recently I've been concerned that something else was happening.
I am about the same time of recovery, my tinitus has improved since the stroke! Lightheadedness does seem to be a problem occasionally, especially when I'm in a crowd or have to face noises coming from many directions. Two years ago the same problems were almost insurmountable so obviously I have improved with time.
I also get dizziness, especially if I rise from bed too fast, but I don't blame this on my stroke because I had them occasionally in the past.
Thanks for the replies, slightly more comforting to know I’m not the only one. They say time is a great healer, hope it heels before my time as it is debilitating. I always get a headache for about 3 days after the dizzy spells and feel really down. It’s good to be able to share with people who understand as people who haven’t been through this can never understand and can only sympathise.
Dear Stonecold and Iain
Don't know if this helps, but the one thing that has not troubled me during the 22 months of my journey, is headache. Logic suggests that if I have an attack on my brain then I would get headache. I don't. I used to get frequent migraine but since stroke migraine is very rare. Silver linings !
One of the issues many report and I suffered, was the waves of depression that attacked. Whatever causes that attack might be similar to your feeling down.
Would it be fair to say your dizzy spells are stroke fatigue ? I got/still get severe SF which I thought was typical but perhaps mine is on the bad end of the scale. I had SF for nine months and then it drifted away. Oh what joy, alive again. But two days later SF returned in an amended form. It is still busy trying to ruin my life and I am now at 22 months. Things do ease a little.
And there is no medical help at all for SF.
On the plus side my paralysis lifted fast. We are all different but we do share many common issues.
Nice to have you two on the forum. Male and well in to your journeys. Deigh has been an ever present superstar, helped me masses. As have others.
Hi Colin and Iain
I didn’t consider sf to be honest I thought maybe something going on brain or nerve related. Now you mention it, sf could be playing a part as I do start to suffer towards the end of the working week. I went home Thursday last week as I was feeling really awful, slept for hours and woke with a drum banging in my head. Management don’t seem to know the difference between tiredness and fatigue. The tinnitus seems to get worse after the light headed episodes although it is a constant. I try not to let it get me down but it’s never easy and offen find I’m very quick tempered and so find myself going into silent mode so as to not snap at anyone. Thanks for staying in touch it really does ease the burden knowing someone else understands how your feeling.
Thanks for all your responses and thoughts. I don't have much else to add to the stream except to record my gratitude again. My recovery in the last 20 months has been up and down in terms of this lightheadedness and fatigue. Recently, it seemed to get worse and lasted longer than in the past. Last Monday, was extreme and I was finding it hard to keep from falling over. In recent weeks I have become quite anxious wondering if I might be on the way out! Visited my GP who is sympathetic and good, but has never had a stroke and along with other health professionals finds it difficult to relate. Speaking to other stroke victims, like yourselves, has reminded me that we stroke survivors are best at supporting each other. Thanks for your honesty and compassion. It seems that each of us travels a different route in this process, but there are crossroads where we experience the same things. My stroke nurse in Australia told me that recovery was a lifelong process. The best days I have are the ones when I focus on what I can do rather than what I have lost. My brothers (and sisters), we came through strokes and we live today. Let's continue to support each other. It seems we all have down times.
I found it helpful to define just what SF felt like. For me its like a metal clamp on my head. Others have said treacle, fog, velvet curtains but the best of all was head in the washing machine.
If I meticulously prepare for a task then things are easier.
Lack of ideal sleep and the slightest level of "overdo" cause all sorts of difficulties. My ultimate guide is whether or not I can get socks on and how straight forward is that task.
The dizziness is a bit difficult. And I am also quite stupid. I keep doing things that I know will get the SF going. Like a third glass of wine.
I have a morning regime of washing, shaving, make bed, dress, tidy living room, eat breakfast and then the important bit, sit quietly for 20 minutes. If I fail to do this regime then I will have a rotten time, often a whole day later.
That's a good thought Iain, focus on things I can do. I will remember that when I next attempt to move furniture.
I too am so much more quiet as I will say things I don't mean.
Nice to have you guys online.
Reading all the mail in this correspondence makes me very aware on the differences everyone has. It is hard to understand that our similarity is that we have all had a stroke. If we had had a broken leg, appendicitis, a heart bypass or even a cold the results would be near identical but in many of us the stroke was not even easily recognised. I have a friend who lay on the floor of his living room for three days unable to make a decision until a phone call forced him to pull the instrument off the table and keep shouting for help into the mouthpiece. Today he has no speech problems, no walking problems and no loss of strength but persistent tiredness! Extraordinary!
I have similar problems to most people but I have easier conditions to handle them with. My wife is the prime car driver, I live in a small 'village' where everyone is a pensioner and all of them have problems of some sort so everyone keeps an eye on everyone else. New Zealand has a moderate climate, a realistic health system and a sensible answer to most problems. I am warm, dry and comfortable. I can't sue my Doctor, I have confidence in the police and fire service to look after me in an emergency and could run for parliament if I had the energy!
Recovery is a lot easier under these conditions.