Good days - bad days.. not much professional help

Hello everybody!

I am 33 years old, got a daughter who is 2.5 and the most patient, calm and understanding partner. The last 3 years have been mainly a living hell and it hurts me so much to say that as it should have been the most amazing time of my life being pregnant, giving birth to my daughter and being on maternity leave.. I could fill a book but I will try and keep it quick!
My grandmother and great grandmother suffered really badly from migraines - my mum has had episodes but they stopped when she came off the contraceptive pill. I struggled a lot with severe tummy cramps which no one could find a cause for as a child and eventually at the age of 16 they removed my appendix 'just in case' - after having read up it could sound like my migraine was abdominal back then. Please please spare my daughter!!!

I have been (and am still being) fobbed off by my GP - I had to beg and cry (actually did both) and eventually after 2.5 years and unsuccessful affairs with pizotifen, propanolol, diazepam, naproxen got to see a Neurologist. I was in tears after my visit. He didnt ask me ANY questions about my lifestyle, my health, my symptoms, what medication I have tried - NADA ZILCH big fat nothing. I was prescribed Pregabalin by my GP started on 75mg twice a day but after going chronic and nearly losing my job he doubled it to 150mg twice a day (have been on that for 5 months). I am very aware of rebound headaches and will not take additional painrelief more than 4 times a week. I take Imigran Radis (sumatriptan 50mg) on the onset of a 'real' attack and 9 times out of 10 it stops it in its tracks in about 2 hours. but I always have a baseline headache and I never used to before I started on Lyrica/Pregabalin. When I go chronic I use Naproxen as a pain killer twice a day, sometimes will have 2mg diazepam before bed (not even once a month as I can honestly not really feel any effect at all so would rather not) my neurologist (in my 10 minute visit) pretty much sounded like a topamax sales person - he should have had a badge saying 'There is always topamax' but seeing as I live in the UK I am presuming there is no commission medication sales thing going on? I have in the last few months had bad days where even thoughts of suicide has crossed my mind. I would never ever resort to that. I got too much to live for but my GP told me that unless I had those thoughts every day it wasnt a depression/mental health issue and if I really felt it ACTUALLY was he could always give me some antidepressant pills on the side - but also to bear in mind he didn't really have time to discuss these things with me or listen as he sees 50 patients a day. I left a message with my neurologist's secretary about my concern for my mental health and whether I could bring my June 2012 appointment forward to discuss my medication, no one ever called me back. ARGH!! I am a strong, positive, individual and for me to flag up a possible mental health concern (or even go to my GP in the first instance) is not something I would never do lightly.
So what do you do... it is like Tee (I think it was) described in a different post - you go through the motions of diagnosis, different medications, being fobbed off, hoping. I am now at the point where I have realised that I do not have any professional help on my side.

I really would love a slice of my life back - I am not even referring to being able to have a few drinks, go more than 2 hours without eating, or drinking less than 2 litres of water a day, trying not to be stressed, I don't even want to be ridiculously happy all the time but being in constant pain, working full time,being a mother, partner, and putting meals on the table, doing food shopping when I most of all don't want to eat a thing after 5pm, just doesnt work - I cannot think clearly, short term memory is in pieces and whenever I have brief moments of no pain I go to a nearly ecstatic elated place which makes me realise how big a hold this migraine and/or medication has on me. I have memories of dragging my 12 week old baby on a blanket across the floor so she could at least scream next to me whilst I was throwing up and at that point my other half would still be under the 'just another headache then' mentality which he has apologised for since. I darent say anything to a professional out of fear of PND being put on me and I knew I was NOT depressed.

Why is this illness not being taken seriously?

Anyways enough of me rambling - can open worms EVERYWHERE!! Sorry for being incoherent - my thoughts are with all of you suffering out there,

xxx

Miyah,

Sorry to hear you're having such a hard time! I hear this a LOT and it's heart breaking

So we can understand more, can you give a more detailed insight into your symptoms?

Thanks

Thank you for your reply - much appreciated. I suffer from common migraine (I believe the classification is, nausea (although only vomiting on ocassions), photophobia, heightened sensitivity to noise the pain is always on the right hand side around the temple area and it starts slowly and will build up to a pulsating/sharp throbbing and I will have to go to bed with a heavy pillow on my head and wait until it passes (usually 24 hours) I used to get these attacks on average 5-6 times within a 30 day period. The pain sometimes comes together with jaw ache, blocked nose and sinus pain and my skin feels very tender on the right side of my face - nearly as if the nerve endings were exposed. My gp told me it was tension headaches and referred me to physio and prescribed me lorazepam/diazepam and NSAID pain relief (diclofenac) neither of which really made a difference. Was lucky to see a locum GP as my own was on holiday and he gave me a big hug and said it was time for prophylactics/prevention medication. I took pizotifen but I was an emotional wreck, cried all the time, extreme moodswings, very dry mouth and couldnt stop eating - after 3 weeks I stopped taking them. I was put on Propanolol and worked my way up to the high dose as recommended for prevention staid on them for 6 months or a bit longer I think - but nothing happened migraine wise so I came off them - I was quite pleased about coming off them as I have raynauds which affect both hands and feet and my feet blistered a lot and were quite tender and purple (I was told this wasnt a concern as I am young?). I then started pregabalin: 150mg of pregabalin split into 2 doses. after a few weeks I did feel a difference - and it was really good but in October last year it went chronic pain and it took every last inch of me to get up in the morning - spend 9 hours in the office - pick my daughter up from nursery and get home. I would simply just collapse and not be able to do anything, I started having days that were very dark and constantly felt I was snapping at my partner (who thankfully just ignored it) I was impatient with my daughter and feeling depressed about not seeing friends or being able to cook without it feeling like the end of the world. I double my dose (at the advice of my GP) and after 2 weeks I did get some respite but it has gone bad again now since January. I am not sure whether you can build up tolerance? I have worked really hard on implementing life style changes: I go to bed/get up at the same time every day, I do not drink alcohol (apart from special occasions!), I drink at least 2 litres of water a day, I stay away from nitrates and matured cheese, I take supplements of 1000mg magnesium malate, 5-HTP, Q10 and vitamin B complex. the definite triggers I have found are: skipping meals, dehydration, sparkling wine (even expensive champagne), hot and humid weather and my main one: stress. I have never considered myself a stressy person or one with tendency to depression - but i keep asking myself: is it because I am in constant pain that I am stressed and feeling depressed - or is this on top of my migraine and if it is stress how do I stop that when i am not aware I am stressed?? Imigran Radis 50mg is a God send for the big ones - I have not had to spend more than about 3 hours in the bed in darkness as when I take them early they will stop the unilateral sharp piercing, throbbing pain but I am left with a constant feeling of being washed out, lethargic, nauseated, tearful, depressed and pain allover in my head and I am not sure what my next step would be? I am scared of coming off the pregabalin as I might get massive migraines again (it seems the pregabalin has evened everything out to a constant blurb which my GP thinks is good as at least I am now not missing days of work) he says I can take antidepressant on top of pregablin but I am starting to feel like a patched up pill box.

I forgot to mention I had the Mirena coil in May 2010 and that is when it seemed to escalate - had it taken out March 2011 as I wasn't sure whether it was the problem. Also in July 2009 my daughter at two days old accidentally (obviously) cut my cornea in my right eye which unfortunately turned into Recurrent Corneal Erosion MOST PAINFUL THING EVER!!! I was under consultant care and recieved PTK surgery in Sept. 2010 which was 80% succesful. One of the consultants had a theory that the constant tension from the severe pain experienced my eye caused migraines and I should consider botox injections.

Hope all of this makes sense - years of not being able to share details and look what happens when someone asks!! thank you for asking xx

I went on holiday for 9 days in Antigua with the in-laws in January and only had 1 migraine (which I stopped within two hours with imigran my own fault for celebrating my engagement with a small glass of champagne!) I had cocktails throughout the holiday and had a whale of a time with my family.. So stress/everyday living might be the cause? and how do you work with that?

You're not teling me anything I wasn't anticipating.

Can you tell me more about the pain distribution? Where exactly do you get the pain, are there other areas where are less sore than the main area but still painful?

The fatigue is as simple as sleep cycle distrubance

I find it really difficult (but am getting much better) to distinguish the different pains - especially when it never really stops completely. I have the 'actual' migraine which is always without fail on the right hand side - somewhere behind my eye but level with my temple. This pain is very cut through and I catch it with imigran before it escalates. I also have pains in my left temple (also behind the eye but higher up) and either side of my head (but not all the way around) it is quite high up - this pain is seldom stabbing or fierce but more like a pulsating, throbbing, dull 'I would like to put my head in a pillow sandwich or vice' - all of these dull pains can become unbearable when I get up from my desk to get someting from the printer - basically if I move it gets worse so I probably look like a walk a bit funny when i get up! I also find I use the lift a lot as the stairs feels like torture. We recently bought a new mattress with a latex/memory foam top - it is lovely but I am with you on the sleep cycle disturbance as I have very lucid dreams about people hurting my head - i crawl straight into the shower which helps. I often wake up with pain having gotten worse so I have recently started to eat some oats/non ripe banana an hour or so before going to sleep in case my body was counting the sleep period as missing a meal.

I feel a bit lost - tried to ring my neurologist this morning and they cannot move my appointment forward but he might be willing to prescribe me topamax through my GP without a visit. I dont want to appear difficult but I would love for someone to talk me through medication choices - how they work together (or not work) I have not tried the antidepressant way forward yet but do believe some people have success with this? I am worried about constantly feeling depressed, sad and in pain - feel like i am stuck in a vicious cycle.

I'm not a fan of medication.

You certainly have classical migraines. The pain behind your eye and over your temples is not neurological in origin, it's muscular.

There is a muscle called the lateral pterygoid which originate from behind the eye and is involved in jaw movements. Pain behind the eye is fatigue of this muscle. There is also a large fan shaped muscle called the temporalis which is obviously where the term temple comes from. This too is involved in jaw clenching

The problem with medication is something called medication overuse headache which is the bane of my life, and this is the vicious cycle you need to be weary of

Correct muscular and neurological control should keep you comfortable and hopefully negate the need for any medication

Have you seen my post on 'triggers'?

May I ask, do you get clicking, popping or locking from your jaw joints? Any pain in or around your ears or pain on eating? Any neck/shoulder pain at all?

Have you ever had any accidents such as falling off a horse or car accident? Any joint problems elsewhere or any kind of knee/hip/back/sciatica problems?

Sorry for the numerous questions, I'm trying to build up a picture of what is going on!!

I could tell you some stuff about why you find it difficult climbing the stairs but you probably wouldn't believe me

Ask away!!!

My jaw is fine and I have never had any pains or popping/locking. I do find that my headache spreads down over my face and into my jaw/sinus area if that makes sense? I have been seeing a Physio through a scheme at work (sadly this has run out) and whenever i can I treat myself to a neck/shoulder/head massage (the woman I see also does Reiki although i am a cynical person i must admit it feels fantastic) but we are very strapped financially and these luxuries are the first to go. I read something you posted about an iPhone app - maybe setting aside some time before bed listening to that to try and achieve better sleep? I really don't like medication and sometimes I don't know whether I am too much of a martyr as I don't take much painrelief (naproxen normally) unless its really dire - it never really takes it all away but it shaves maybe 15% off the top which stops me going insane and enables me to go to work. Although i could have headaches relating to overuse of the lyrica I am pretty sure I keep myself in check for the others. Imigran - I do not know if this is a common side effect but my heart rate goes up dramatically and i tend to tuck myself away for the two hours before it works.

I was in a car accident (1st June 2011) an acquired mild whiplash to my neck and lower back these pains themselves disappeared about three months later (I have been doing stretching exercises) but my migraines were bad before then -so not sure whether it made a difference.

You have intrigued me about stair climbing! Do tell!!

The history of whiplash is significant. It usually means there is a ligament insertion injury which often goes undiagnosed and missed which can have a huge impact on pain levels

The sinus issue again is likely to be a form of migraine. You've heard that blod vessel dilate in your brain which cause the throbbing sensation? It can happen in your sinuses too, and is usually misdiagnosed as sinusitis. Now, you'll appreciate that without examining you I'm guessing!

I'm developing an iPhone app which will help you log and track your migraines so you can build up a good picture of how they are affecting you

With regards to the stair climbing, I'd bet good money you have collapsed arches/flat feet which is affecting your balance and leg strength

What treatment is recommended to treat or at least diagnose whether the whiplash left some longer term damage?

If your doctor is comfortable diagnosing this then they may have done already. To be honest, this has not been my experience. Again, my training is primarily US based in the field of pain & migraine management.

If there is an underlying problem which is not being addressed, then the results of any other treatment can be significantly reduced. It kind of like treating a deep cut on a finger and ignoring the underlying broken bone.

Pain management is a massive and complex field!

If there is an underlying problem which is not being addressed, then the results of any other treatment can be significantly reduced. It kind of like treating a deep cut on a finger and ignoring the underlying broken bone.

Pain management is a massive and complex field!

I couldn't have said it better myself. Two different GP's have been wanting o put me on anti-depressants for over a year but I feel strongly in myself that I am not depressed - it is simply my pain that is making me so. It just seems like everything ends with a prescription - no-one really considers what medication you may already be on, personal circumstances etc. My most important role in my life is bringing up my amazing daughter - I wanted to breastfeed her till she was 1 year old - GP said it wasn't worth it as I couldn't take any medication - but I did it anyways, it was really hard at times and we did spend some days with the curtain drawn and I would sleep every time she had a nap I feel like I am in a vicious cycle and I also feel like I could come out of this but I had hoped it would be with the help of an enthusiastic professional that would treat me holistically. I slept great last night, I was in a fantastic mood and I am pain free at the moment, this might sound silly but I think it is because I found this forum and because you took the time to read all my incoherent posts and actually replied to them and asked me questions. This year will be a good year and I will find a way to make my life better

There are ways to get you out of pain, they're just not well known or understood!

Being able to vent, and reduce the stress a little may certainly help in reducing pain!

Hello and welcome to the forum

Pav has given you some great advice

(Sorry I have taken a while - had a masive vertigo mig then inetrnet went down....)

Anyway - firstly I agree with Pav - its sounds like you have classical migraine........ and you have already worked out that this is a life style illness and that there is no cure - just better management.

You need to not feel guilty re your son - My chronic stage started with the birth of my twins - so I know where your coming from... but he is young and his memory of now will be limited - you need to get YOU sorted so you can be the mum you want to be.... a good doctor once told me it was better to have a ill mum than no mum at all!............. and my 11 yr old says some of the best days he remembers is when we had a PJ bed days - I basically was too ill to do anything - so we would stay in PJs all day and struggle in bed and he would watch TV........... we given had lunch in bed........... to him it was one to one time and he loved it - they will remember that hug and kiss at night xx

I know its hard - I have been there - but let the little things go - so there are toys on the floor - you can step over them and they will only be there again tomorrow - and beside mess shows there was fun!!

Let those thought of guilt go to........ when you get one simple image them floating away - sounds odd, but you need to stay in a calm, stress free space right now.... It is interesting that you say Reikie works - I am a believer in energy healing - but it could also be the fact that it is a period of time when you STOP and relax.......... you need to find a way to do this on your own (so £ is not a issue) I would suggest mediation or Beuyko breathing......... I am about to write a note on how to do mediation and will share the link once I have done it.......... but learning to be in the NOW and forget yesterday or tomorrow and to switch the brain off will help you relax ....

Are you keeping a migraine diray??

The treatment you are getting from you doctors is frankly not acceptable - you have highlighted here (very bravely) that you have suicide thoughts already - one of the side effects of Topamax is suicidal thoughts - I have been there and it is not a nice place to be - they are not listening to you. .......... where are you?

The first thing to sort out here is professional help - the GP has a duty of care to make sure you see the right consultant - The best approach is to go in and say you want to see Dr XXXX... this doctor X needs to be a migraine neurologist - Not all neurologists are the same and finding one you can work with is so important..... It took me 4 to find the one I work with know and he is fab........

Here is a list of of NHS hsopitals with clinics https://migrainetalk.forumotion.co.uk/t95-neurological-departments-in-nhs-hospitals and https://migrainetalk.forumotion.co.uk/t96-migraine-clinics-in-the-uk

But if you let us know where you are I am sure someone will be able to recommend someone.....

The supplements you are taking sound good - but what brand are you taking - like neurologist all mineral etc are not the same - you need to make sure you are taking a natural one - the supermarket ones are not good enough - Higher Nature do a True Food group of mineral which I can hand on heart recommend....

Re your bed - did the migraines get better or worse when you changed your mattress not your sleep but the migraine??? and what pillow do you have??

You sound like you have a few of your triggers worked out - have a look at this list a few more may jump out at you - https://migrainetalk.forumotion.co.uk/t330-types-of-triggers

Hope this helps

Tee x