Chronic migraine and ice pick headaches ??

[Lkakpk]

I’m on here to rant really .. and also to ask if anyone has similar .

So I have had headaches for as long as I can remember ( I’m 33 ) can’t remember a day without a headache .First seen a neurologist when I was about 17. Had all the scans etc . Told me not to over take painkillers etc and diagnosed me with chronic daily headache along with ice pick headaches
Since then I’ve been diagnosed chronic migraine and ice pick headaches .
ice pick headaches I agree on . Fit the description perfectly and are at times helped with indomathecin .
Now, here is my rant - chronic migraine .
I do not fit the criteria - my headaches are never ending . Always throbbing , but no start and end . I didn’t suddenly get more attacks , I just have never not had a headache! . For as long as I can remember !
I actually DO also suffer migraine with aura and they do not feel anything like what I get daily ( daily ones are actually worse !) and at least the attacks don’t last long .
Anyway , I get six week spells where I am literally disabled with the pain - constant ice picks every few minutes . Severe throbbing . Nothing touches it - then it will just one day die down and revert back to my daily pain . When I get these six week flairs there is literally no end to the pain . I cry daily . Nothing helps . Neuro says chronic migraine but why does it feel nothing like my textbook 2 day migraines ? Even the pain is different .
I queried this with neuro .. she said oh maybe it’s new daily persistent headache then if it just never stops ?! I feel a bit at a loss and feel like I would just like to know for sure wait exactly it is that I have !!
Anyone have a similar pattern or diagnosis ?
Silly as it seems , I would feel better if I knew for sure what it was !
My gut feeling is it could be iih which is increased intercranial pressure but neuro tends to dismiss this .
Sorry for rant I’m just keen to here from similarly affected people ?!

Hi,
Have a look at 'Cluster Headaches'. I'd never heard of them until I met my 'new' partner (three and a half years ago). He suffers from them, and they're awful. Worse than awful. Some doctors/consultants dismiss the pain as migraines, but they're altogether different. There's a Facebook site where you can chat to other people that have the condition, and lots of help - tips, etc. My partner finds that having an oxygen cylinder available which he breathes from at the onset of an attack helps enormously. Do some research, join the fb group, and see if you think your headaches are the same as theirs. Good luck, I hope you find some help x

@Jillybloop393 Thankyou for replying . I’ve often thought mine might be a variation of this but always been dismissed as definitely migraine with ice picks as a sub category if you like . I will join the group though and see if i can get any tips . Thankyou x

You're welcome - I hope you find something that helps. If you do end up thinking it could be cluster headaches, and you want to try the oxygen route (which a huge amount of sufferers find helps the most) you might have to really push to get it. Some Drs just won't go along with it. My partner has one in the lounge, one in his bedroom, and a small canister in his vehicle, just in case! A company delivers them, takes away the empties when they bring the new ones, and also do checks occasionally in the home to ensure that they're being kept in safe places - not near fires for instance.
If you need more info just let me know. I'll find the fb group, too, hold on ...

It's Cluster Headache UK. Obvious really, ha ha! They're a supportive bunch .... but I hope it's not what you're suffering from, because it's hugely debilitating.

Has your neuro done an MRI to look for signs of IH? Or tried medication like Diamox? There's some useful info here:

https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/idiopathic-intracranial-hypertension

Addenbrooke's are doing some interesting research into IH and it might be worth asking for a referral to neurology there from your GP, if you're not too far away geographically.

I was diagnosed Epilim by a consultant at Kings College Hospital and that really helped. But I also had Aura Therapy and that also worked for a few months.

@PragmaticWench I’m actually under neurology currently ,
they don’t think it’s iih. I don’t have paplidema and I’m not over weight ( although I know neither are needed for diagnosis ) I have had mri and no signs on there either but all my symptoms do match up . Unfortunately neuro see quite adamant it’s not that and said even if it was without vision loss we would treat it the same as chronic migraine. Frustrating x

@Rocknrollstar hi , what is epilim ? Not heard of it ? X

Sadly you CAN have two or more headache disorders for the price on one. I have a diagnosis of chronic migraine and chronic cluster headache. I am under a specialist headache neurologist at a hospital headache clinic. I can recommend contact OUCH UK if you might have one of the rarer forms of TAC (trigeminal autonomic cephalgias) They truly suck and eat your life. My vision varies day by day thanks to chronic migraine. Concentration can vary wildly depending on pain levels. Drugs that help most rarely touch chronic migraine. If you have worked through three or more preventative drugs ask about Botox for migraine, hurts like heck to have done to your face but works to reduce symptoms and pain levels for most. Another possibility is the newer Clonic antibody group of drugs. more info can be found on the Migraine Trust website as can info on chronic migraine. There are some FB support groups for chronic migraine but they can be a bit of a mixed bunch. Ultra high flow oxygen may be used but you can only access home oxygen provision with a clear diagnosis of CH. TBH it is about the only thing that can really help. Sumatriptan is the go to as it’s about the only 5HT drug that can kick back. If it’s for CH push for nasal spray at the least and sumatriptan autoinjectors as the best. The tablets take too long to work and if it’s CH a you really REALLY a need a drug that can kick in before 15 minutes. Keep an in-depth headache diary with as much detail as you can. That will help your neurologist to work out what type of headache disorder/s you have going on.

I have a bad headache or migraine or CH 24/7 and it is not fun. had to give up looking for work and now on PIP. It really can be that bad. (Typing with migraine avec triptains so I hope I have made sense)

@triballeader Thankyou for this . I’m truly sorry you suffer too . I wouldn’t wish it on anyone !
Ive tried two Crps ( made things worse ) Botox didn’t help and also had a few nerve blocks which are always hit and miss .

im currently under a headache specialist and she has changed my diagnosis from chronic migraine and Ice pick headaches to New daily persistent headache with migraine feautures when I queried the fact my headaches never started as episodic then increased and also they feel nothing like my textbook migraine with auras I get about once a month on top of the daily headaches and flairs .
It just frustrates me I don’t fit into any type of box and I can’t stress enough how many gps have said it can’t be just one migraine when I’m on week six of constant 24/7 pain !

@Lkakpk Concur with nerve blocks being hit and miss. Sometimes they may help but they can also make things so much worse. I am sorry botox has not helped. It can help some but certainly not all and sadly there is only one way to find that out.
In my case covid19 played absolute havoc and mixed chronic migraine with ECH to produce a hellish chronic form of both. It’s a good day if I can get up and get clothes on. My neurologist was appalled at how severe and disabling it had all become he went and argued that I had the most pressing need for the hospital to fund botox, CGRP and nerve blocks. It really is the most horrible and debilitating disorder. I did try to go back to p/t work for two hours a day but my God, the increase in pain was beyond anything I could actually cope with and I have a high pain threshold.

Try and keep the most in-depth headache diary that you can. Not all migraines have aura warnings and migraine can change how it presents over time. Mine likes to take a pick and mix of migraine with aura, vestibular migraine (scary and the one I truly dread the most as it makes me so very ill for days) and ocular migraine. Chronic forms of migraine and related chronic headaches are incredibly difficult to treat once they get going. chronic CH causes Horner’s syndrome resulting in well meaning members of the public offering to call an ambulance as I look like I have had a stroke. Not a great look.

The hospital arranged for me to have most of the drugs in A&E at home so I could avoid having to wait in A&E whilst they track down the on call neurologist. My GP only prescribes as my headache disorders have been rated too complex for GP management, current headache neurologist describes them as being extremely challenging for a specialist neurologist to manage. Push to be seen by a spec list hospital headache clinic. See NICE and BASH guidelines for supporting your request. My headache clinic allows me to make an urgent self referral when it gets bad. I found OUCH UK to be very supportive and have found the brainwreck rebels online one of the saner social network support groups as most live with two or more chronic headache disorders. I applied for and was granted PIP. I recommend the Brain Trust UK for support in applying for disability benefits Thankfully I have a very supportive husband so I have not had to face the horror of applying for UC or similar.
Hang in there, whilst this is rare and you are unlikely to meet another face to face with this you are not alone.