Questions for those with Chronic migraine and cch

Hi there,

Sorry to hear that you are having such a crap time.

I had to smile at your opening line about living like a mole in the dark- I can totally relate to that and am pleased that you do retain a sense of humor about the situation. I  too have CCH and CM.

I cant say that I have constant symptoms like you (other than when I'm in bout) apart from the allodynia on the scalp. Theres a little spot on the top of my head. I've kinda gotten used to it now. I had a nerve block but sadly that didnt help me- but others have had good results. Initially because I was so sensitive to touch, I was diagnosed with Trigemnial Neuralgia... but I presume this had been discounted by your GP?

Again, I dont get constant bilateral pain, but I did begin to get bilateral attacks last year during the bouts. This worried me greatly, having been strictly one-sided. I am fortunate enough to get Botox and when I mentioned it to the pain clinic, they put more in the 'new' area,which seems to have stopped it. Might this be worth exploring?

Hi Miss KittyB,

Thank you and thank you for your response, sorry you have CCH and CM too :-(  I think without a bit of humour I would go a bit crazy :-/ . I get a patch on the top of my head that gets especially severely painful for a period and then goes back to normal pain levels, which my headache specialist says is part of my CM. Yes sadly we seem to get used to the pain.

Sorry the nerve blocks didn’t work for you either, I had such high hopes for them. But glad the Botox was helpful to you. I had the nerve blocks twice, both times made me worse unfortunately. This last GONB I had both sides before Christmas, I also had lots of Botox with it. I ended up in such an awful way, with side switching clusters and my constant background pain was increased up to a constant level 6 for at least 3 months and been stuck at 5-6 since, with attacks on top.  My other conditions as mentioned above worsened, and it’s been going from cluster to bilateral migraines to fluctuating eye attacks and just linking from one to another.  And at the same time the Verapamil increased my chronic background migraine and bilateral attacks.  I have never been as light/noise/sound everything sensitive for such a long period in the 16 years I have had these, been so housebound.  I also have TMD/jaw damage and facial pain disorder, these worsened too; when I eat or laugh, it sets off jaw pain, which trigger’s facial and head pain and nerve shooting pain etc etc. Interesting that you mention the TN, I have discussed TN with my headache specialist, but he believes that shooting nerve pain in the face and over the head is probably the CCH.

My headache specialist explained my trigeminal nerve is super sensitized, hence the reaction and is hoping that he can calm it down with medication and that he could retry blocks/different blocks in the future, though I would be really wary.  

Think my new combination of drugs are just starting to turn the corner just a little, as got down to my very first level 3 since Christmas last Thurs! So was quite emotional, and I got into the garden the other day to see the peony shoots coming up and all the buds everywhere, and it felt like a huge cloud starting to lift a little , but too early to say and I don’t want to jinx it…

How are your conditions managed currently?

Gerardine x

Hi,

Having tried all of the ususual (topamx,epilim, gabpaentin ,indomethacin, and others too numerous to remember), I currently only have Candesartan. It isnt helping at all. I had to stop Verapamil and Nortriptyline as that didnt work. Cant get oxygen from my GP as the Nottingham NHS will only do it with a Neuro referral! (Yes, I know about the NICE guidelines). Zomig spray works 2/10 times

I'm level 6-7 most days, but get rare weeks with nothing at all. The last week, I have been 8-9!

Botox reduces some of the migraine symptoms - and Ido have a nice , smooth forehead!

Hey, ho..

Miss KB :-)

Have you tried contacting the prescriptions adviser at your CCG about oxygen Miss KB?  Have a word with the surgery's practice manager first as she ought to know the procedure. Failing that, the CCG. 

Dorothy 

When we couldn't get an adequate supply of Triptans from our GP we wrote to the practise manager with the NICE guidelines and it got sorted out.....I guess because the NHS is expected to comply with NICE, so once confronted with the guidelines they couldn't really argue further.  It took a few further conversations with the practice manager to get their computer system to record this in a way that ensured any GP could see the info and prescribe..but we got there in the end.

Harriet.

Hi all,

I do feel that I may have 'hijacked' Geradines topic, but thanks for your replies.

My GP would have been more than happy to prescribe oxygen when I turned up last year with the HOOF form, and was very apologetic that he's not allowed to do so. The story is that the Nottingham NHS had revised their practices in the last year, so that oxygen for cluster can only be prescribed by a Neuro's letter!!

I have searched without any sucess to find this on t'interweb,but keep coming up with the general info that GP's CAN prescribe. 

I'm sure Gerardine will forgive you! 

Sounds like it's the CCG then... Maybe ask them why they aren't allowing the GPs to fulfil the NICE Guidance!

H.

Wow! It seems to have gotten busy here.  I Just got back from seeing my headache specialist in London (Dr Lambru) and having MRIs and feeling quite emotional about what was said.

Thank you Miss KB for responding :-).  I really hope the oxygen gets sorted soon.  I know Botox feels weird…although it didn’t do anything for my pain, I know what you mean about the smooth forehead, mine was quite unmovable:-/

Unfortunately, I spoke prematurely about coming out of my mole hole; I’m still there.

Gerardine :-)