MIGRAINE..-OR ..?

New diagnosis and before diagnosis
1

Morning all

I continue to wait for neuro 1st appt and after about 8 weeks, most of the ‘symptoms’ that drove me to GP again have abated. This is good, in respect of not being preoccupied when they are ‘in your face’ (pun intended !) Also not good as it fits a remission pattern of course

Anyway, think i had posted re lightheadedness and nausea before re whether a common experience for those with MS and again making a bid for some more detail. I will approach GP about this, though her common response to anything now is to ‘wait’ for appt. To be fair, i think current problems would merit neuro appt so is much of a muchness in that respect but keen to hear similar experiences of others, or not?

Lightheadedness has been a common problem for me on and off for years.Its not vertigo or true dizziness, just that spaced out/slightly woozy hungover feeling though it it horrible Its also invariably accompanied by nausea.

I have had migraine since my 20s, mostly hormone related i think. Sometimes i get aura with no headache, but headache with no aura. For a good while have had headaches that i thought have probably been worsening migraines and just generally getting on with it . Some GPs think lightheadedness is prodrome though tried to tell them its not always accompanied by a headache…go figure

However over the past months they have felt quite constant and steadily worse though wondering now if they are TN related an am misreporting them and this or facial tingling has been symptom of something else and not migraine. At one point i thought i had a migraine constantly for 10 days but that is unusual i think even in Chronic Migraine

I have downloaded a migraine app (Migraine Buddy if interested, charts frequency, triggers, weather etc - its free and v good) and for months i have pretty much had migraines or nausea and lightheadeness on a daily basis.

Its become very intense to the point that i am now affected for hours per day, and am noticing also it appears to be post eating, I do have T1 Diabetes but posprandial spikes in blood sugar are not new, nor excessive numbers am seeing but every day if feels like it starts then and doesnt move even in line with reduced BG numbers

I will approach GP, not looking for diagnoses honestly! I just dont want to go on a Triptan or nortryptiline if its not migraine and ordinarily a trip to neuro should have been made before now for the lightheadedness but they went down cardiac route intially then … nada. i did go just after T1 diagnosis and neuro said its ‘probably’ just my body adjusting. However, ask anyone with T1 diabetes and they wont recognise these symptoms unless its low or prolonged high bg

Feeling desperate now as all though altered sensations and bladder have calmed down and looking forward to something resembling normal… this has now become a major PITA

2

Hi EML,

Do you have a date for your Neuro appointment? I can tell from your post how worried you are and I totally get it, it’s so hard to know which doctor to talk to about what when you are on the waiting list but not yet being seen. Been there myself!
Keep ringing the Neuro department in case there are any cancellations - I managed to get my first appointment brought forward a bit. It’s obviously a personal choice and only you know how much the headaches are affecting you but if I were in your situation I’d be weary of starting any new meds before seeing the Neuro. So if I could manage to hold out I would just in case they recommended something different. But if it’s unbearable then I’d take what your GP suggests, they’re not going to give you anything that would hurt you at the end of the day.
Feel better in 5 is a book my sister bought me a few months ago and I’d recommend it to anyone with chronic health issues. It’s written by a GP and the basic message is that there are some very simple and easy things we can all do to help ourselves feel better. Might be worth a read in the meantime while you wait for your appointment. I know I tend to google when I’m anxious and it only ever leads to more questions than answers and more anxiety. So having something positive to read instead really helps me.

Sending lots of love anyway. All these symptoms are no fun at all. Hang in there and hope you feel a bit better soon x

3

Thanks Charl

Am not/haven’t really been an anxious person and still not-barring all this carry on. I am actually quite a proportionate person re Dr Google, and dont tend to ‘fit’ myself in to things though this most recent attendance at GP wil now be 3rd time have mentioned concerns re MS to them. I am also generally a ‘self manager’ esp given I have an existing long term condition but its the array of symptoms and of course limited access to usual appts etc due to Covid that is driving current anxiety.

Sorting the wheat from the chaff is the most mentally draining thing just now. I haven’t asked for a Tripan or other meds, as there is a bit of me that would absolutely want a proper assessment of things (migraine/bladder) before I start taking meds. In saying that am heartily p**d off with symptoms I cant ascribe to one thing or another hence questions re symptoms so much

Increasingly problematic migraines would i think merit a referral to Neuro but in the meantime living with daily something or other is dragging me down a bit. Ongoing issues with Lightheadedness/nausea would also merit Neuro now ( they said before they might need to be). So, all roads lead to Neuro. Though have been symptomatic of something or other for weeks, referral was only made early July so even in non covid times there wouldn’t be appt by now and options to speed it up are limited. I also think that of course people with symptoms of brain tumours, serious issues absolutely should be seen first but am becoming increasingly despondent - can see anxiety building, poor sleep etc.

I have lots of strategies to try and alleviate it, but mind over matter absolutely impossible just now

I have of course looked at private (though I really wouldn’t want to ideologically etc) but their restart is slow too.Then i worry that if i cant cope with limbo/prospective issues, how will i be if it takes forever… or get diagnosis

I know lots on here have been in safe boat.

4

So sorry you’re having to deal with all this. I wish there was something more helpful I could say. I totally get what you mean about never feeling quite right dragging you down. I often wonder if there will ever be a day when I genuinely feel ‘well’ again. As in completely well, no ifs or buts. Each time someone casually says how are you and I answer fine thanks I’m very aware that I’m lying!
I hope an appointment comes through for you soon. If your referral was early July then I would expect them to be sending you the date for it shortly even if it is still a bit of a wait away to actually be seen. Xx

5

Got 3rd generic letter today advising am on outpatient waiting list and covid impacting on this etc. When saw the letter cone on i knew it was NHS and then hopes dashed again. Been sniffling ever since as hopes dashed. Day off work today as exhausted and literally cant be at peace…esp as now have twitching muscles and creeping fears re this noq. Going to go buy magnesium today and vit d- figuring it wont harm me

6

So frustrating for you! Good idea re the vitamins, if nothing else it’ll feel good to know you’re doing something about it if you know what I mean. If you keep needing to take time off work let your GP know and you never know they may upgrade your referral to urgent if it’s having that big an impact on your day to day wellbeing.
For now though it’s Friday night, nothing can be done until next week so do what you can to distract yourself and hopefully switch off from it as much as is possible. X