Hi all, I’m here for my dad to ask if anyone has suffered with dizzy spells. Since March 2020 he has suffered with dizzy spells not very regularly. To the point where he would have to hold on to something or put his head in his hands. He’s found it happens more when he lifts his arms up or cranes his neck up if he’s looking for something. Anyway last night 29/5/20 my mum rung me hysterical crying my dad had collapsed and she couldn’t wake him. I raced round and my dad had woken up and managed to get himself on the chair but was vacant and didn’t respond to anyone talking to him. After ambulance had been and my dad refusing to go because despite this going on since March none of his GCA drs have an answer as to why his dizzy spells keep happening. But this time I think it scared him as he couldn’t remember what happened, didn’t remember me coming holding his hands. I’ve told my dad to get in touch with his GCA dr and request head scan again in case the biopsy has done something to the rest of the artery.
He is a 67 year old man, only has GCA not PMR always been fit and healthy all his life till December last year As my dad says he’s fit and healthy from his neck down it’s just his head
Has anyone else suffered with dizzy spells since having a biopsy or suffering with GCA?
It’s now getting my dad really angry that no one can tell him why!!!
My dad and his brother ( blood) both have the condition GCA and is the only known siblings to have it. As it shocked the drs because they’d never know it to be potentially hereditary. Or just a fluke that both brothers get it.
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Passion4cars
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Thank you for that. Reading it does seem very similar to my dad minus hearing loss. He hears just fine. Do you know if this was linked to having the biopsy?
As far as I know - no. The Research all started because a Consultant had 2 patients who when he first saw them complained of loss of hearing as well as the other symptoms of GCA. He came to a support group meeting and asked the question.
He then realised it needed research, so we undertook some basic stuff and when that result, showed deafness, tinnitus and vertigo. Subsquently the NHS (we had to give them a starter of £,1000) research department completed the research and verified the findings, resulting in the published paper.
In future it will be included in new guidelines for diagnosis - but they are at least 3 or 4 years away.
Do you know which hospital his Consultant is in................if so you call him/her.
Do not ask your Dad to do it - sounds like your Dad is like most men (except when they get a cold) and you know the rest.
So take the bull by the horns make that call and and ask him/her if s/he has seen this paper, offer to send it to him/her or just the link.................and see what happens.
That is what I would do........but then I am odd and pushy..........and would be even more so if it was one of my parents and it can do no harm and perhaps the Consultant might just learn something.
Not impressed by those doctors to be honest - there is a genetic component to GCA and PMR and brothers will have the same genetic background. It isn't hereditary as such but there is a distinct trend in some families, the posh term is familial aggregation! Maybe they need to google it
Has anyone checked his blood pressure BP in both arms? One cause of fainting like this can be subclavian steal syndrome - and it is one thing that is part of a differential diagnosis with GCA, i.e. other things it might be. One sign is a noticeably different BP in the two arms. Depending on where the narrowing of the artery is, raising the arms may reduce blood flow to the head enough to make the patient dizzy and even faint.
However - he really should go to hospital when it happens as badly as that. The dizziness could be what is called a TIA, transient ischaemic attack or mini-stroke, They don't leave any signs on head scans, which is how they differentiate between a TIA and a proper stroke. However, they can be warning signs that a major stroke may happen in the near future. That may be more likely in the first year or so after a diagnosis of GCA so they do need keeping a close eye on them.
Another possible cause that the doctors may have difficulty picking up is episodes of bradycardia, slow heart beat. I had this problem together with atrial fibrillation and it is probably due to the autoimmune part of the illness having damaged the electrical system in the heart that regulates heart rate. The slow episodes happened after a brief period of fast heart rate and often I didn't notice it unless I had a dizzy spell. At first it was just like a wave passing over me, it never lasted long and I didn't even feel faint. But over time it happened more often and and was a bit worse. I had ECGs, 24-hour monitors for heart rate and for BP and only once was it caught - my BP had plummeted but it wasn't obvious why. Then I had a multi-day monitor but it was the wrong sort, it happened but it only recorded once you pressed the button so it was always too late. They must be recording when it actually happens - it doesn't happen every few minutes, it doesn't even happen every day.
Finally I did faint, hitting my head and twisting my knee - had a fantastic black eye! I also had a transient global amnesia (TGA) at the same time - that means you have no short term memory for some time, it can be up to 24 hours but can be far less too but it does come back. I was taken to hospital - and put on a heart monitor where they saw the irregular heart beat and the slow periods. I was having pauses in heart beat of up to 7 seconds, that would be a pulse of less than 10 per minute if it lasted long! No wonder I fainted! They kept me in, on a monitor, until they fitted me with a pacemaker. No such problems since!
So maybe the doctors are looking in the wrong place - its not necessarily the head! And your dad does need to be investigated thoroughly and not just by his GCA doctors who are really not very good at cardiology! I had asked my rheumy, a world name in the field of GCA, but he held up his hands when it came to the dizzy spells. Looking back it became quite obvious but the doctors need the evidence before they can do anything,
Hi Passion4cars, I am a 74 year old male and I have dizzy speels. I suffer from GCA/GPA. The dizziness began last August after deveoping a cyst on the lumbar region of my spine. I would never wish this dizziness on anyone. I have not been able to get an answer from a multitude of consultants and doctors. They don't know what causes it. I have had 4 falls because of it, thankfully all onto carpet. I had an appointment at the Balance Clinic here in Leeds but 2 days before the appointment I received a phone call and it was cancelled; all to do with the current virus..... they cancelled every referral.
I am so unsteady on my feet now that I have to use a walking frame and have also bought a rollator; I grip hold of each and every surface just 'walking' about the room. I experience it from the moment I wake up until I fall asleep at night. It is the worst ailment I have ever dealt with.... everything in my life has changed.... from the smallest thing upwards. Nothing is straightforward now, everything needs planning even if it is just going to the kitchen. Any time I stand up I fall if I have not got anything to hold on to. I was taken to hospital after the first two falls but all they did was to put me in bed and watch me for 2 days. They then arranged a brain MRI and a CT scan but nothing was found. One consultant told me it is 'usually' because of a small stroke, but they couldn't find any stroke indicators in my brain. So I was discharged with the advice to take care! Your father has my sympathies but I'm afraid there is no advice I can offer to him, I am still trying to work it out myself. If there is anything I can do for you, just drop me a reply.
You might want him to go to a audiologist. He could have a crystal that has gotten out of place in his inner ear. If it is an out of place crystal doing the Epley maneuver will stop his dizziness. And he can do it himself. It's just a way of moving your head. Just Google it for instructions. It is also possible that he had a stroke or Tia and since he didn't go to the emergency room he would not know. However if it was a stroke he could still get a CT done of his head and they will still be able to tell that he had a stroke. If it was a t i a they would not be able to tell anymore. I'm assuming he has no lasting deficits since the incident.
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