Hello Sarah and thanks for your post

Scalp cooling can be effective in preventing or reducing hair loss in some people. Unfortunately there are some side effects associated with scalp cooling which you can read about here.

As you can see headaches and dizziness can occur and some people are mildly affected by this, where as others can be more affected by these side effects. Before you have your next treatment, there are some useful tips for helping you cope with scalp cooling that you might find helpful.

Do ask for some painkillers before you have scalp cooling to reduce the risk of developing a headache. Bring extra layers of clothing with you to put on and bring or ask for a blanket to help you keep warm. Also drinking hot drinks can make you feel warmer. 

Hopefully some of our forum users will come along soon and share their experiences with you , as support like this can be invaluable. But it's important to remember that everyone's experience will be unique to them.

I hope this helps. Give us a ring if you would like to talk anything over. The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Best wishes,

Celene

Hi.

How did you get on with the cold cap, did you give it another go?

I've just had my 1st EC treatment and tried the cold cap, and my headache has been awful. I didn't take paracetamol beforehand, but have taken some since, but it doesn't touch the sides?

I'm nearly 48 hours after treatment and am drinking loads, hopefully this will help, but like you, I'm wondering is this down to the Chemo or the Cap

Hi there,

Just seen your post following Round 5 yesterday.  Started my HER2 positive drugs since Round 4 and now experiencing awful diarrhoea instead which is new.  Had me in hospital for a 5 day stint last month but hopefully partly infection related but we will know in a few days should the same reactions come back!

To answer your cold cap problems, I decided after feeling so poorly during Round 1 that I did not bother with the cap on round 2 as after 16 days following round 1 my hair fell out in clumps and wasn't alittle I was left with so little before starting round 2 then I took matters into my own hands to have some control and shaved it off!

Round 2 happened and didn't at all feel the same effects so I put it down to the cap.  Yes, I still felt sick for about 3 days and I still felt like sleeping for England with a dull hangover but it was so light. No headaches, no dizzy spells, no migraines and it was so much better for me too.

I know it's a personal choice but for me I'd rather loose my hair agsin that to ever feel the way I felt on top of what else we all have to put up with!

I have since managed to watch, learn and listen to my body each cycle. Oddly enough it grows in between in cycle, then days 14-16 comes and then it goes again!   I have though been lucky enough still to hang on to my eyebrows and still have nice nails.  I eat nuts as much as I can but I also sweep caster oil all over brows before bedtime as like my nails and they still look good!  Can't say the same for eyelashes as they're very short but castor oil didn't agree so close to my eyes.  So I just use eyeshadow instead as a liner to give me some sense of who I once looked like!  That and playing around with wigs but am quite happy with a beanie most days!

I hope your journey improves and please feel free to keep in touch and how your journey goes.

Best wishes for a good marathon in the best way you can and I pray the results follow!

Sarah x

Hi Sarah.

Thank you for your reply, I've only just signed up to this, and saw your post regarding headaches, cold cap etc.

I've just been told that it's likely cold cap. Fortunately almost approaching 48 hours, I am starting to feel better. Its a very vague headache right now. I'll have to think long and hard for round 2. I'm glad I gave it a go though. Sorry to hear about your stint in hospital, I hope your feeling OK as possible now. Great to hear you've kept your nails, brows, and some good tips, I'll just go with the flow, as there not too much choice on this.

Fortunately I've not experienced dizziness or nausea, but I think the headache has been way enough for now.

Sending love and hugs to you x

The thing about pain and painkillers, painkillers tend to be more effective before the pain begins, than once it sets in. Similar to anti sick meds, it's better to take those meds prior than to get on top of it once the nausea sets in.

You should have been given them prior to treatment.

I suffer from migraines, and luckily i get auras, which give me around 40 mins notice before the headache starts. If i take the pain meds at the beginning of the auras, the headache is more than bearable once it appears, and is away within hours. If i waited until the pain began, i'd be floored with the meds doing little or nothing to relieve it.

Good point, I wasn't told to take anything, or offered anything, even though all along I'd said I'd like to give the cold cap a go. 

I've just started on Ibuprofen now, I didn't like to put too much in my system, and I was unaware...

But will definitely know for next time, if I decide to give it another go. Fortunately no sickness, headache is manageable, but just highly irritating. 

I had my first EC treatment yesterday and feel fine apart from the slight headache I've been experiencing ever since, I knew it must be from the cold cap but like you I wasn't asked if I wanted some paracetamol or anything first before having it. The cold cap itself was fine, totally bearable I didn't have any issues apart from I will be bringing extra clothing next time (boiling outside so the ac was on full blast, I was literally quivering).

I also used a homemade cold cap when I got home for an hour as I didn't want to pay for penguin caps but what I liked about them was continuing for a bit longer once home, so I just made my own alternative .

So I know why I have the headache and am reassured it's not just me!

I have auras and the chemo EC has increased the frequency. So few people understand how scarey it is. What to you do to manage and did chemo make your worse? It's a worry that so few people understand aura.

I used to have maybe 1 a year perhaps 2 now it's 3 in 6 weeks. 

Thanks for sharing 

I cannot tell you how relieved I am to read this. Had first EC with cold cap 2 weeks ago and was admitted to hospital 24hours later. I can’t remember anything but couldn’t answer basic questions, my family said I didn’t know how to get dressed. I felt dazed for a few days afterwards and like you, not sure what was chemo, cold cap, stress or infection! I’ve decided not to continue with cold cap as had terrible headache and am convinced it was that that caused it. I’ve got you d 2 on Friday and terrified it will happen again but planning to get in and out as quickly as possible!!! Fingers crossed it was cold cap and I’ll be fine. 

Can I ask was you better without cold cap had my 1 st round every used cold cap was in hospital felt having a stroke headaches numbness eye blurry ct clear said side affects but is it kemo or the cold cap