Cluster heads! Advice please!! :(

[Kenzie93]

I'm really struggling to cope with my chronic cluster headaches, since i've been pregnant they have had to pattern to them anymore and strike at any time, i'm now 7 months pregnant and really scared, i try to keep as calm as possible to try not upset the baby, but within 10mins i'm usually on my hands and knees crying and screaming in pain. no tablets i have been prescribed have worked as of yet. i really don't know what to do anymore, I'm 23 and have been suffering with them for 2 years now.

[Cally01]

Oh Kenzie 😢 if they're that bad you really need to go to ER. If the GP isn't helping you 😢. Have they not tried oxygen?

[Kenzie93 in reply to Cally01]

I've been once to the ER but they thought i was after strong painkillers and sent me away with paracetamol and as they last around 45mins a time by the time we get there they've stopped, i tried oxygen in the hospital when i first became pregnant and was admitted with bad sickness but it never even touched it i feel so alone with it, i've lost 99% of my social life. thanks for replying, it's nice to know someone out there understands!!

[Cally01 in reply to Kenzie93]

Awe huni 😢 what are you taking? I had migraine right through both pregnancies it was aweful. Your not alone you have a whole migraine family RIGHT HERE 😘

[Cally01]

Have you seen a neurologist? You know you can call the national migraine centre for advice x

[Kenzie93 in reply to Cally01]

No i haven't, I'm getting straight on the phone to the docs this afternoon, i didn't know you could ask to be referred to see someone, i was taking verapamil and zolmitrapan sprays but the past 5 months i've just been holding the hot kettle to my head when i can get there in time, i didn't know you could call the migraine center, thats the second call to make this afternoon, i have a bit of a smile now thank you very much!! <3

[Cally01 in reply to Kenzie93]

I wasn't aloud any triptans. Migraleve duo should give you relief, 2 pink then 2 yellow 4hrs later even if you feel a bit better. You can't take them when taking triptans . Their mainly paracetamol based and a lot more gentle than triptans.

Google for NMC contact details.

Your GP is shocking 😠😠 x

[Kenzie93 in reply to Cally01]

i might give them another go, i was taking them like sweets but only cause i thought i was going through standard headaches. you've been a saving grace if i'm honest, a little hope and advice goes a looong way! and you've been 100xs more informative than my GP!!! x

[Cally01 in reply to Kenzie93]

Please let us know how you get on 😆 i know your sore but don't be fobbed off huni.

Hassle the life out of them 😆😆xx

[MaryF]

Is there any autoimmune disease in your family, including Thyroid? Or history of other things going on? with grandparents when they were younger, or siblings, parents, close cousins etc? MaryF

[Kenzie93 in reply to MaryF]

Hiya MaryF, no one in my family has had anything like that, my nan has angina and my aunt suffers from vertigo, they're the only real medical conditions known.

[MaryF in reply to Kenzie93]

ok, as sometime people have Hughes Syndrome/APS easy to diagnose with blood tests and easy to treat, often relatives have migraines, including vertigo, autoimmune conditions, a history of miscarriage in some people and also heart attacks and strokes, often respond well to Aspirin as basically it it an autoimmune condition that makes the blood a bit too thick and sticky, some people periodically get a strange lacey like rash in places. if any of this rings any bells come back to me as I have this. MaryF

[Cally01]

Kenzie i was prescribed migraleve duo throughout my pregnancies they helped a lot. You can get them from the pharmacy. Have you tried these? X

[Kenzie93 in reply to Cally01]

I have tried these and nothing, before i understood what Cluster headaches were i these are what i took. the codeine in them didn't mix well for me at all x

[Cally01 in reply to Kenzie93]

Right if you have codien sensitivity the doc needs to get their finger out. If i was you i would keep presenting to ER until they done something. Botox is something that helps a lot of cluster migraine patients. Your ER will do it if your not hetting out of pain.

They really should scan you but i doubt they will with your condition.

In my opinion us migraine people are too nice, wee need to fight more 😠

[babs1234]

Ask your GP if you can supplements vitB 12, co-e Q10 and magnesium. They have helped me but not sure if your pregnant. Feel for you and sending hugs x

[Kenzie93 in reply to babs1234]

will ask about this, thank you very much xx

[shearing222]

Just joined so I can reply to you . . . Cluster headache sufferer myself.

Seems you are getting migraine advice here - which is a completely different disease - please visit ouchuk.org/ and call their help line - it was the best phone call I ever made.

Best of luck to you

[Kenzie93]

thank you very much, i know people confuse it alot with a migraines. i'll give them a call this afternoon. thank you for joining to reply to me..means a lot± x

[magirose]

Hi. Do you have any other health issues going on at the moment? Your migraine sounds quite extreme. I have experience of extreme migraine which is part of auto immune disorder.

[Anxbevy]

Hi hun how are u doing? I'm suffering too with bad headaches no med is helping

[ericthespark]

Kenzie .... Is this you Miss B .... from the Midlands?? .... If not, please try Cluster headaches on facebook (Large C, small h) You will find the help and advice you need there. Pain Free Wishes