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Fuzzy/full sensation in head

Hi all, just a quick question, has anyone else suffered from a strange feeling in their head?

I have been on Glivec since September 09 and over the past week I have developed a srange feeling in my head. It comes and goes throughout the day, but it feels like my head is full. Its not quite a headache, but like there is some pressure building up and a slight tingle.

I notice that CHRISSBB mentioned something similar late last year but I was wondering if anyone has any advice on what it could be or what I could do to reduce the symptoms?

I'm not dizzy, have any pain or light headed, its just a weird feeling. I have been feeling a little anxious the past week so I wonder if it could be that?

Thanks all

Michelle

Hi Michelle,
From reading your post i can actually relate to every single symptom and timescale. How you have described it is word for word how i have always told my doctors and GP dealing with my CML. I started Glivec in Jan 09 and the sensations started about 3 months later, which also seems to be your case from when you started treatment.
I also brought it up as a question for the specialists at the seminar in Nottingham. And there were 2 other people in the audience who had had very similar things going on with them, one lady had to switch treatment because of this alone. But i know you will be anxious as i was every time it happened, i honestly thought i was having some other problem with my brain, But from it been such a common occurrence before Christmas i got in touch with my Haematologist on how worried i was getting, which led to a CT scan on my head. I got my results back last week and everything on the report came back normal !! What a relief, but i would suggest if your worried to put your mind at rest and do the same. We are on a fantastic medicine, i can cope now i know it is nothing serious. I also still get alot of chest discomfort when i get tired which comes on around the same time the fuzziness come with the head.
I hope this helps a little don't worry, but you can feel free to e mail me on christopher105@hotmail.com if you want a chat about it in more detail.
Take care Chris.

Dear Michelle and Chris,

I am interested in this side effect as it must be quite worrying when it happens. I am glad to hear Chris that your scan was clear as I am sure you must have been quite worried about it all.
I was wondering if your HGB counts are within normal range? I remember before I was diagnosed, which is over 10 years ago now, that I experienced something quite similar. In then end of course it was explained by the fact that I had CML and a very low HGB.

Coping with the worry and stress (often unconscious) brought on by busy modern lives is challenge enough... the fact that we also have to live with CML taking therapy in the long term, does add a lot to the general 'normal' stress and everyday worries that we all have.
I am sure this has a physiological effect- in fact I know it does.

Imatinib keeps most of our blood cells at low levels whilst it is doing its job, especially in the first years. When you think about it ...at least as far as the white cells go.. this is a good thing, because it means the the PH+ cells are being kept to a minimum.
However this inhibiting effect can also include red cells. When I was taking imatinib my HGB only ever got up to 10 (never more)and I did notice an amazing change in overall physical strength when I finally recovered from the immediate effects of my stem cell transplant. My HGB recovered and reached its present rate of 13.5
and this fact alone has made a lot of difference to how I feel..and not only on the physical level.

Hoping that time will resolve this issue for you both,
Sandy

Hi all.

Whilst I don't strictly have CML, but rather a "subdivision" of it called Chronic Eosinophilic Leukaemia (Fip1Li-PDGFRA), I have been on Imatinib at 200mg a day since last year. Started on Imatinib 400mg daily in May 2008.

I have the same side effects. My consultant at Addenbrookes, Cambridge thinks it is to do with the slightly less efficient transfer of fluid across membrane surfaces.

This is consistent with the slight water retention around the eyes that some people get as well (interorbital swelling?).

Just a thought, but I'm happy with that explantion and so is my Doctor.

Just had latest PCR (my 4th) and I remain PCR Undetectable.

Fuzzy head, but feeling very fortunate.

I dont know if this helps but just after I posted on CML Support on Friday, the sensation was about the worst I had experienced yet, its weird as there seems to be no pain and the sensation seems to slowly move around areas in my head. Because of the movement I am never sure if I imagine it at first?

Anyway, I went to bed and within 5 minutes of lying my head down I experienced 3 little pops in my left ear. The pops were no way near anything like what you get when you fly, but I am so sure it was air escaping from my head/brain! And I havent felt the sensation since all weekend... WEIRD.

I can cope fine with most of the side effects, but this is def a strange one!

My HGB was around 11 the last time I was tested (about 3 weeks ago).

Speak soon.

Michelle

Dear Mathew,

good to know you are responding well to imatinib and that this drug is effective in CEL. PCRu is a great place to be.... fortunate is an understatement ;o)

Is imatinib licensed for use in CEL and if not are you part of a trial?

Very best wishes,
Sandy

Dear Michelle,

that does sound like a strange experience but I am sure it would not be air escaping from your brain. It is more than likely that owing to the extra fluid retained around the area of the eyes and face and which is a very common side effect - see Mathew's post below- the build up of pressure in the sinus area might cause this effect- hence the ear popping.
I am sure it is not serious or anything that you have to worry about unduly and hope this strange effect will resolve over the coming months...and it is very good that your HGB is at a reasonable level.... .

Best wishes,

Sandy

Sandy,

Thanks for your comments, I am very pleased believe me!!

As for Imatinib and CEL. Well, it's licenced for certain types, but not all subtypes of CEL. It's a rare Leukaemia with 3 or 4 different "flavours". Luckily Fip1l1-pdgfra is one that responds.

However, NICE don't recognise CEL and therefore Imatinib is not strictly straightforward. My Consultant made an Exceptional Cases appeal and the drug was then given on NHS.

It is ridiculous really that we go through these fights for our lives with NICE.

Hi All,

I was diagnosed with CEL (FIP1L1-PDGFRA+) 2 months ago. While not CML, it is very similar and there are no support groups that I have found in the UK.

My mother had AML, and my daughter ALL. Sadly I lost my Mum to the disease when she was just 54, but my daughter is fine after 23 years (she was diagnosed at 3).

So i've lived with the spectre of leukaemia in one form and another for the last 30 + years. To be diagnosed myself with CEL has rather knocked my off my feet. My health had began to deteriorate markedly when they eventually tested for, and found the FIP1L1-PDGFRA gene fusion. 2 years of strange symptons and then a routine blood test picked out a FBC that way out of limits for eosinophils, and a mast cell tryptase level 10 times higher than normal. BMB indicates CEL rather than HES, but the prognosis and treatment is the same - so whats in a name!

Aquired, rather then hereditory, I'm told. Too much of a coincidence if you ask me.

Anyway I'm currently on 100mg imatinib daily and learning to cope with primarily the headache and occasional brain fog, but most of all learing to solw down! I'm a senior Army Officer having served for over 35 years and don't know how to slow down!!

I hope you don't mind me tagging onto here - theres so much useful info!!!!