On the 13th February I had my last 'trip' to the haema. He told me my platelets are in normal range still and to continue administering 45mcg Pegasys every 10 days. After a pause he said, he was happy with my other readings but didn't share. Yesterday for the first time, I had a really dizzy spell and felt as though I may pass out. this is not like me at all. throughout the most hideous situations in my life, I have not been one to pass out but this was followed by a spell of being slow with thinking (about 30m minutes) and then back to my new normal! I needed to sit down because I felt unwell.
I suspect this may be due to low something in my blood. Can anyone identify with this and give me a clue as to what may have caused this. I have had more pain and headaches since my last injection on Sunday 17th. and fatigue levels are increasing at present. Still drinking my water all the time and clopidogrel 75mg daily. Dog walking the morning and doing my best to stick to the anti-inflammatory diet. Today I will see if I can get hold of my blood results. All the best to you all. P
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JackLina
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Hello JackLina, not a very nice experience for you, dizzy spells are awful. Do you have a specialist nurse at your hospital that you could contact to discuss this? If not, then go and see your GP about it. Hope you feel better soon. Maz
I Jacklina, it sounds like you had a light TIA. Trans Ischemic Attack. It’s a light form of stroke, very common in ET patients. I’ve had 7. My biggest was my third, which brought me to the hospital. By that time, the symptoms were almost gone and only a numb brain was left over. That’s the day That led to my diagnoseis, after looking at my blood test. It usually happens when the thrombos go up. Hope that helped.
Oh I certainly hope not. I have had so many TIAs in the past but since being diagnosed in March last year, I have had nothing but improvement with platelets reducing etc. Clopidogrel and Pegasys are doing their jobs I hope! Thank you for your response.
Hi JackLina, how are you feeling about it being your last visit to heamo? Have you ever experienced a panic attack? I have and it was much like you described. I'm not an expert on any of this, but it just sounded familiar and if you're anxious about 'going it alone' it could bring one on.
I hope you've heard back from your nurse and that all is well now.
Hi . Thank you for your concern. I should have said my 'latest' visit to the haemo. I have not yet had my last and don't expect to any time soon. I do not suffer panic attacks and this was something very different from my many TIAs or past stroke experiences. this happened when I was casually leaning against the side of a patio door, looking out t the birds and squirrels and commenting on the lovely relaxing scenery. Definitely not a panic attack, which I have observed in other family members!!! I am seriously too tough for those...really! All the best Angel I hope you are feeling better about your situation. x
Hi Jacklina I’m phil I’ve had E T for few years now I’m on hydroxycarbamide Apixiban and many other medication
I had a Tia in 2017 October I lost my vision temporarily didn’t know at the time what it was
I have frequent dizzy spells the Tia was something called amaurosis fugax and the dizzy spells something the stroke consultant said was presyncopal symptoms I have a fall detector on my wrist now off social services it’s like a watch connecting to your phone with 24/7 call centre
I had to lower myself in the bathroom recently and was admitted to hospital I’ve had while driving it’s frightening I had my license revoked for two months they took me off clopidogrel and aspirin and put me on Apixiban but still have the symptoms
Not great yours might not be related you need to speak to your haematology team
Oh dear, that sounds very severe. I have had those type of TIAs for many years and beside losing sight, I also lost my speech and understanding of words. Quite frightening and debilitating for a day or two and not back to normal for two to three weeks but this was not one of those.
Thank you for taking the time to reply to me. I hope you are managing to come to terms with your dilemma. All the best. x
Hi JackLina I'm just wondering did you find out any information on your dizzy spell from your specialist nurse or gp?
I just had the same experience earlier today, your explanation is exactly how I felt, along with never experiencing anything similar in my life. A little disconcerting to say the least. I feel a lot better now but still slightly wierd.
I am only recently diagnosed with ET and overall have been relatively well, a bit of pain in the toes and tingles in the fingers along with a few days of fatigue (they were tough enough). I am just on aspirin and was informed on my most recent visit I am low risk thankfully
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