Hi Daisy
You obviously had a bad night as I saw you'd posted in the early hours. I hope you managed to get some sleep.
I'm sorry I had missed your earlier posts but have just quickly read through your history. I want to say that I'm no expert on migraines but have had a long and arduous struggle with them and have seen many very well regarded specialists so have learnt a lot as the years have passed.
The main overriding thing that hits me from reading your posts is that of anxiety and fear. The unknown can be terrifying and that is what you are trying to deal with at the moment, the unknown. It is actually sometimes easier to deal with a known obstacle when it's standing in front of us.
Only you can know what is best for you, only you have all the facts about your history but I tried putting myself in your shoes and tried to work out how I'd handle your situation.
You need answers and definitely need the reassurance of having a thorough overhaul so the MRI may give you a bigger picture. I don't know what your father's neurological condition is but you refer to it often so I'm wondering whether you think you have the same condition. If so, would an MRI be able to determine that or would a lumbar puncture be needed too? You've mentioned MS a number of times, have they tested you for this?
Your anxiety could well be being caused by your physical symptoms, equally it could be that anxiety is causing your symptoms, and of course it could well be that both are concurrent and are caused by the same and different things. So many questions! Get the physical tests done so you better know where you are.
As far as migraines are concerned many of the symptoms you have discussed can be those of aura and prodrome with or without the headache. Nausea, pins and needles (I get these down the left side of my face with some aura), exhaustion, apathy, phantom smells, odd tastes in the mouth, lack of interest in food. As I was reading I was almost writing a tick list. At one point I though, this lady needs to speak with Mary G, I then read on and found you had!
The fact that so many of these symptoms started after the Mirena was fitted set off more warning bells. Peri seems to change our coping dynamic, things that were tolerated before, in peri suddenly aren't. My migraines kicked in at the start of peri along with all sorts of allergies and heightened reactivity to things. One thing's for sure, it seems you need to balance the progesterone hit from the Mirena with a good dose of oestrogel.
Stress too is an awful trigger for migraines and you've had an awful lot to deal with recently. You mentioned your anxiety sweeps in in waves, could that be related to the adrenaline surges we can experience before flushing, have you noticed any relationship between the two? The raging hormonal swings some of us experience in peri seem to trigger anxiety and depression in lots of women. For some HRT can help enormously with this but for others they also need some ADs. There are many women on this site who need both. Whilst ADs shouldn't be the first port of call to treat peri symptoms, often it's necessary to combine HRT and ADs. We are all different; there is no set formula.
One thing I have been told by docs repeatedly through the years is that, it is very common for those who suffered with PMT, and other hormonally driven difficulties to have a tough peri. That applies also to mental health, therefore if you struggled mentally with periods, PND etc it's an indication that you may well struggle similarly with peri.
One thing I've noticed is that too high levels of oestrogen can cause symptoms very similar to PMT. We have discussed this subject many times here. Therefore it is sometimes difficult trying to work out whether you are struggling with too much oestrogen or too little. I think CLKD suggested that you keep a diary of what's happening to you. All of my specialists insisted upon it as it can assist them with identifying what may be triggering your symptoms, especially if it is hormonal. Just a few minutes each day recording what's happened to you, bleeds, breast tenderness, changes in cervical mucus, mood changes, high anxiety, particular stress, anything that could help build a picture. It is amazing how quickly patterns start to emerge and this info is a tremendous tool for docs to work with. Also, and I may be a control freak, but I think it helps enormously to just recognise why you are feeling like you are. I like to known what is going on and why!!
I've never suffered with anxiety or depression and for that I am immensely grateful because it would have made my experience to date much more difficult to manage. I am therefore reluctant to offer advice with this. However, I've experienced many years trapped in my bed for anything up to 24 days a month and I found that when the going got tough the only way I could deal with it and with the accompanying chronic pain was to find a release, a way to deal with it. I would simply close down. I would allow my brain to slip away into a number of storylines. Who knows perhaps this was a form of self devised meditation but it would allow me to exit the present and the pain as much as that was possible. I also had a go to ‘feel good' DVD series which again distracted me. Even the music on it was enough to start to ease my load!
Sorry to have rambled, I felt so sad for you last night that I wanted to try to offer another perspective. If you want to ask anything about migraine do please contact me. The hemiplegic migraine doesn't necessarily cause long term side effects if you were worrying about your client.
I wish you well Daisy x
