Tingling Head

[Panda2017]

Hi

I’ve been taking Hydrea for just on 6 months now and have just started getting a weird crawling feeling in my head, it’s driving me crazy!! Does anyone else have this issue. Thanks Panda

[mjfin72]

Hi Panda. I have ET but am not on Hydrea yet, just aspirin.

I get that tingling crawling sensation in my legs, head and face along with other symptoms. My consultant was quite baffled and isnt entirely sure they are ET related. I will be seeing him again in a few weeks and its quite possible I'll be starting on Hydrea then as we have discussed trialling it to see if symptoms ease/disappear. My platelets are currently around 1.2 million and have been for around a year now.

Sorry can't offer any advice but I know what your going through. It really is a weird sensation.

Regards

Mandy

[Panda2017 in reply to mjfin72]

Thanks Mandy I have MF n had it for 3 years n platelets went up to 1000 so was put on the Hydrea which I was not too happy about but don’t want the alternative. So it’s really hard to know if it’s the medication or the MF. I won’t see my specialist till March but may give him a call just to check.

Take care

[ChelseaF]

I am not on Hydrea but have had that sensation. For me it’s something between a tingle/pain/itch/crawling feeling. Very hard to describe. I also experienced buzzing and tingling sensations on my face, lips, tongue, hands, and feet. All have improved since I began B12 shots and vitamin D. B12 deficiency is common in MPNs and we can be functionally deficient even with high serum levels.

I don’t know for sure if that’s the cause but it seems connected for me.

[Panda2017]

Hi Chelsea

Thanks for ur reply I phoned my specialist today n he left me a msg to say he thinks it could be my platelets r up but they were only 608 last week so he will ring me tomorrow after he checks the blood test. Oh dear of course I’m in panic mode now thinking I’ll have a stroke!! Lucky I have a calm husband who sees the practicle side of things. Thanks fir ur reply I’ll ask him about the vitamin shots.

Thanks again