my name is Norma I had my stroke 3 yrs ago I have got a funny feeling in my head all the time it feels twisted inside and makes walking about very difficult I also have double vision so when i take a shower without my glasses I have to close one of my eyes any help please
Hi Norma, have you spoken to your GP about the sensation's in your head and your double vision? I know it can be difficult to get hold of the GP at the minute but if I was in your position I would give it a go and not give up until I'd spoken to the GP.
If you feel having a shower is unsafe it might be worth asking your council's adult services for an occupational therapy (OT) assessment. If its beneficial they can provide things like shower seats or other useful peices of equipment.
I have been to the doctors dozens of times he doesnt understand all he thinks is it is anxiety which it is not. I have asked him if I can see a neurologist to which he has told me there is a long waiting list so I am prepared to wait. I have been to an ear nose and throat specialist and after a good examination and an hearing test he told me it is nothing to do with my ears. I have practically given up I just wish somebody has got the same thing and we can share notes with each other. Thanks for your reply. With best wishes Norma 81 yrs young .
Hi Norma, extremely frustrating, but if you have the energy and inclination stick to your guns, and be persistent. You know yourself better than your GP, so it's a case of being politely assertive!! Don't give up!!
Take care xx
Hi Norma. I also was told there would be a long waiting list to see the neurologist when I asked my GP when I had a problem with numbness in my leg. I was seen within 3 weeks because the neurologist was concerned I may have had another stroke which GP hadn't even thought about! I hadn't as it happens but yes, definitely stick to your guns.
The trouble began 2 yrs ago when I was advised to have a botox injection in the muscle inmy eyeto cure the double vision.There was a spillage of the botox inmy eye and it cured the double vision vertically and caused it horizontally which I still suffer with. My head was not anywhere near as bad before I had the botox. Any information please. Norma.
I feel I spend all my time trying to convince my doctor that I cant live like this he looks at me as though it is all in the mind and tries to dole out some more medication.which is of no use at all. I had a counseller that lasted one phone call and that was that. I dont know which way to turn and try to be positive. I sound like a terrible moaner but I hope somebody can give me advice.
Dont give up. Try to remedy things by your own efforts. GPs are not in a position to help much.
just dont give up.
things will improve.
colin
Hi Norma Jean- It's Jeanne again. I was just thinking about your mention of the doctor trying to give your more medications. I tried to get off as many meds as I could after the stroke. I can't even remember all their names. Some I had to gradually get off of, but thankfully, now I am on just 3-- elequis(blood thinner and my security blanket) dilitiazem for afib, and zetia for cholestrol. I use cbd oil when I occasionally have a leg spasm or anxiety (maybe 1x a month or less). I respect the meds as they helped a lot when I needed them, but I think it's best to take as little as possible. It's not all in your mind. People that haven't had a brain injury can't understand. But others of us do. You're not alone. Take care.
Thanks for your replies it does help to know somebody is out there for me. Best wishes to you Norma.
Hi Norma,
I am 2 years in and have the same every day a headache and like a build up of pressure that make thinking, concentrating etc so hard that after a short period the dreaded fatigue sets in! The docs don't understand as Jeanne rightly says unless you have had a brain injury they can't understand. Stick with it Norma I just do what I can, when I can still trying to come to terms with not being the same person and potentially never will be but we just need to keep going never give up.
Wishing you the best
Andy
Thanks for replying Andy I do hope your head is not like mine. Nobody understands as they cant feel what it is like and I cannot explain it to them. We go a walk every afternoon down a country lane we dont far as I dont really enjoy it I feel as though I am walking in my sleep but it is exercise and that is important. I keep hopinng it will get better I have had it for 2 yrs now. Thanks again and best wishes, Norma.
Hi Norma, 100% understand, I have tried to explain to numerous doc, specialist etc and they have no idea. I feel as though they understand what's in text books and what the gernals say, but they will never understand what it is actually like. What I have understood from reading on this site no two people or two strokes are the same, they don't get that! Don't know if it helps but I started to write how I feel and what the effects are to me. I keep it short A4 on laptop but go into the detail then I just give the docs that, this way I don't forget anything and hopefully they might get it. I undate this doc as and when any symptoms change, this is also good for me to relate back on my progress or lack of it.
Take care Norma
Thanks Andy
Thanks again Andy I agree with everythin g you say you just cant get it through to anybody. I feel my family try to understand but it feels as though I keep on about it as I have got it from the time I get out of bed till I get into it. I never stop moaning not that it does any good. I try to do things but struggle . We have to live with it so try our best. We must keep positive and carry on. With very best wishes. Norma.
Hi Norma
I am an orthoptist we deal with double vision. I also had a stroke nearly 5 years ago. Have you seen anyone regarding your symptoms.
Yes I have had double vision since the stroke 3 years ago. Ayear later I had a botox injection inmy muscle in the eye which cured the double vision horizontal but unfortunately it spilled into the good muscle and caused double vision vertically and since then I have had trouble with my head I cannot explain what it feels like it is giddy inside my head all the time and affects everything I do and my balance is awful I go a short walk every afternoon But I feel as though I am drunk and I dont touch alcohol at all. I am waiting to see a neurologist but have got to wait a long time I am getting desperate as my life is very limited. Thanks for messaging me I hope you will have some useful information for me. Norma. 81yrs.
Do you live in the UK have you been back to the ophthalmologist, orthoptists can try with prisms on glasses to see if the double vision can be corrected. Usually the botox wears off after a while.
I am under an authopist at the hospital but at the moment it is at a standstill. They cant believe the botox hasnt worn off after so long. I have got prisms on my glasses they do help but its my head that has given me trouble since I had the botox. Nobody can understand what it is like and it causes me no end of trouble. My balance is awful and I cant do much at all. Sorry about all the moaning but life isnt much fun. Norma.
It must be so frustrating Norma as its affecting your quality of life. Covid restrictions not helping in getting hospital F2F appointments. Do you have balance problems with the glasses on Or without. Maybe you should see an ENT consultang or your neurologist
Shazia
Hi Norma my name is Donna had my stroke just over a year ago aged 58 I know what you mean about your head.Finally got to speak to a doctor a week ago and he has decided to wean me off my antidepressants which I need as I have had 5 very close family members die in this time.Feel 10 times worse this week.So Norma if you are on tablets don’t let them wean you off them until hopefully your head feels a bit better or it will be like mine feeling even more twisted with electric shocks is the only way to explain it.Good Luck and it’s important to remember that there are plenty of people doing really well.