Status migrainosus

Sorry everyone feeling totally done in physically and emotionally, currently day 12 of my latest status and feeling totally abandoned by GP and consultants. Hemiplegia worsed overnight so now having to use my walking stick to shuffle around and totally mega.

The thing is I was really ill over christmas and new year so unable to work only to be told on my return that they could no longer employ me as a phlebotomist but could offer me a job as a receptionist. Working as a phlebotomist was ideal for me as I had my own consulting room dealing with one patient at a time in a quite controlled environment; whereas working as a receptionist it is noisy over stimulating environment trying to deal with 10 things at once, i.e. very stressful. I was given a few days to think about it and although I loathe the job I decided I was best accepting their offer especially in this current economic climate. Well on January 9th the day I had to give them my decision I woke with a HM, despite how bad I was feeling I started work the following day and I made it through to the end of the week by using triptans. Well Sunday evening my head erupted and I've been off work since. I know that this is stress induced but also know now that I'm looking at losing this job.

Great to hear from you, but so sorry things aren't any better.

Even if you aren't able to work now, you have done so well to work at all, and built up some experience on your CV.

Stay in touch - I often think about you and how you're getting on x

Thanks Sarah, I think of you and the rest of our little gang often it's a shame I've lost touch with you all not purposefully I can assure you. I'm always just so desperately trying to move forward with my life I find I have very little time at my computer but as you can see I'm back to square one yet again. I don't mean to leave you all out its just the way it goes but I'll try harder to stay in touch properly.

So how are you doing?

Love and hugs

Michala
Xxx

Hi hunny

So sorry to read your news - but you are quite right the stress will not have helped with all this, neither will be taking all the meds to get through - but you know all this

You were doing so well and you gave it a damn good go and you should be very proud you managed to get back out and work

Just a thought - do they have a back office job you could do?? My GPs have people in the background that make calls and sort out reports etc............ its a long shot but an idea.

I am also really sorry to read you are not getting the attention from either your GP or consultant (he has been brilliant with me over xmas) .... is the ONSI doing anything to help?

Did you have the Botox?

xx

Oh yes, I'd forgotten about the Botox. I think that was the last that I'd heard, but I can't remember if you'd got funding or not.

No need to apologise for not being in touch. Same old same old here.

I'm not taking any acute meds as nothing helps deteriorated further overnight head is horrendous I just don't know what to do????

Hun is someone with you?

Did you respond to DHE when you had it done - I am just wondering if it gets to the point where you cannot cope - you should go to A&E - but the best they can do is DHE?

Is the ONSI still in - can you turn it up?

Have you emailed Dr S?

Tee x

Had morphine helped before - A&E can do that too....

I don't know what to suggest. Can totally relate to that 'what can I do?' feeling. Wish I could think of something.

xxx

Hi Tee,

Unfortunately have tried dhe 3-4 times with poor results, had oramorph in QS after surgery and didn't have a very good reaction to it.

When I last saw Dr M and Dr S together back in November they said if I went into status again I would have to go through it, except for one injection of chlorpromazine at A&E, which I had last Tuesday for all the good it did after a 6 hour wait!! The doctor I saw contact Dr S's registrar who confirmed that it was ok to have injection and said that he would get Dr S to call me but heard nothing I've tried chasing it up but to no avail.

However we're now 2 weeks on and I am far from improving. I had my last Botox on 17th December, which is the second course I've paid for privately and what infuriates me is the fact that I was doing ok and if work hadn't have done what they did I know I would have been ok, money down the drain, which I certainly can't afford!

ONSI is still in but unfortunately does nothing for my migraine but does wonders for my SUNA.

I will be emailing both Dr M and Dr S today because I just can't continue like this but what good it will do I don't know!

Thanks for your support during this nightmare.

Michala
Xxxxx

Before you give up hope, please tell me more about your symptoms

I'm suffering from a 10/10 headache with pain in the left side of my head mainly at the back with pain running the full length of my spine, severe left sided hemiplegia, with severe nausea (taking ondansetron tds), dizziness, phonophobia, etc. Thankfully due to Gabapentin I'm not off my head!!

Ok, could you be a bit more descriptive about where exactly the pain is on the left side of your head?

What about sleeping patterns? Do you sleep well or feel exhausted when you wake? Do you wake up several times during the night either in pain or not and if so at what times?

The more information you can give me about your patterns the better the picture I can build in my head.

Do you get ear ache or jaw pain? How about a clicking jaw joint? Do you get sensitive teeth or find the anaesthetic doesn't work particulalry well when you go to the dentist? Do you find you seem to break your teeth and fillings easily?

Sorry for the question bombardment!

The pain is mainly in the occipital region but comes up behind my ear and just above my ear but doesn't reach the temporal region.

I sleep poorly waking at least once but up to three times a night due to pain anything from 10 to about 30 minutes. I normally go to bed about 22.30, wake occasionally at about 00.30 but normally around 02.00, then 04.00 and then I wake at 05.45. I never feel refreshed when I wake. On the very odd occasion I can sleep through but this is very rare. This morning I woke at 04.25 and haven't slept since.

I do have TMJ and my jaw clicks when I eat. When the pain is really bad like now my teeth feel sore, that's the only way I can describe it. Thankfully I have strong teeth do have no fillings or other problems with my teeth.

Typical pattern. Perhaps this is conversation we should have in private if you wish? If you want to talk via Skype then my id is migraine.master

Alternatively I'm happy to keep the discussion going here to help other people become aware of the situation.

Your problem is that you are hitting stage 2 sleep and then waking up, your symptoms and jaw joint problems are DIRECTLY related to each other. Stage 2 sleep generally occurs at around midnight, 2 in the morning, 4 in the morning then after 5 in the morning for the 'average' person. You have a condition which is stopping you going deeper into sleep and having a major influence on your pain (basically jaw clenching and tooth grinding).

It's because of this that you feel tired all the time. Most of my patients have 'been investigated' for anaemia etc, but it's not a blood problem, rather a sleep disturbance problem

I'm happy to continue this discussion here so that hopefully it will also benefit others.

I also have bloods done from time to time to make sure there is nothing underlying.

My sleep pattern certainly appears to fit what you've said.

I have seen maxillofacial surgeon about my TMJ who provided me with a gum shield, however this was of little benefit. He then mentioned surgery to wash out the joint, this didn't appeal at the time so I never went back.

So I'm interested to hear what you have to say in helping to resolve this.

With greatest respect, maxillofacial surgeons know VERY little about TMD. Even the fact that they refer to it as 'TMJ' reflects this, TMJ is the JOINT itself, so everyone has two!! There is no specific pathway for referral and they just end up with these patients as dentists don't know where else to send them. I've not met a single one who knows how to diagnose of treat correctly. They normally give soft bite guards which will make the problem worse and are contraindicated. Failing this they advise a 'soft diet and pain relief' but again this has extremely limited benefit.

Surgery is of very little benefit, it aims to address the pain without addressing the underlying cause. At most, perhaps a steroid injection into your joint to reduce inflammation but certainly not surgery

You really need a FULL diagnosis as at the moment we're just shooting in the dark. It sound like you would benefit from having your migraine symptoms controlled and correct therapy for your jaw joint to manage the chronic pain here also. At the moment I can't tell you whether you have a true jaw joint problem or simply a muscular problem around your jaw joint, there is a difference between the two and this will directly affect what type of results we would expect to see.

Remember before I've stated that a migraine is a disproportionate response by your brain to abnormal sensory modulation, so even with HM I would expect to see an improvement in symptoms. To what extent? Impossible to know! Typical results are an 80% reduction in symptoms severity and frequency in around 6 weeks. My most difficult cases may take 12 months, but these are the people who have quit their job and won't leave their house as the migraines are so bad

So what are you suggesting as the way forward?

You either need to find a dentist who understands this stuff or come to see me.

I've said this before but we learn NOTHING about migraines and headaches at university and out of 5 years of training have around 5-8 hours is dedicated to jaw joint problems. I've learnt this stuff from some great people in the US after university

I'm fully aware how little time is given to studying about headache conditions at medical school as I still live in hope that I'll be able to go to medical school sometime myself in the not too distant future.

I am assuming coming to see you would incur a fee so I would prefer to know more about what would be involved in diagnosing and what your treatment plan would involve.

Hi Kala,

Firstly, you need to know that I'm a DENTIST. And yes you are welcome to ask as many questions as you wish.

You can call my practice anytime on 01302 364545, the best person to speak to would be Leah and she is next in on Wednesday

Diagnostics involve a full history of the pain and an assessment of you jaw joint, muscles and teeth as well as any x rays. Treatment plan would obviously be dictated by what we find at diagnostics

Thanks, I will consider taking this option further but for the time being I need to get through this current episode of status before pursing further options.

Having spoken to Dr S on Monday I now have an admission date for 31st January for DHE although I'm hoping and praying it will have run it's course by then!

Hope you feel better soon!

I'll be here when you're ready

Unfortunately no room at the inn yesterday so hopefully QS can find me a bed today!

Oh no......... so sorry..............Hope you get in today and it works.. xxxx