Huge set back!!

Hey everyone this is my first post in this forum! I was diagnosed with chronic silent vestibular migraines with visual vertigo around 12 months ago by a neurologist after lots of investigation into symptoms which started following the birth of my son in April 2014.

My neuro recons I get daily silent migraines with the main symptoms being balance problems, dizziness, inability to cope with busy environments and artifical lights, nausea, fatigue, low level headache, dislike of bright lights, sinking and rocking sensations, foggy slow thoughts etc. Some days are worse than others but I never have a day symptom free. I work part time and have a nearly 3 year old so try and take it easy when I can but it's difficult. I am considering taking preventative meds but at the moment am using changes to diet, supplements and vestibular rehab therapy.

I have also had a few what I would call classic migraines and I had my worst attack ever a week last Sunday! I ended up in hospital for 3 days as they suspected meningitis or stroke or bleed but everything was ruled out. It started at 8 pm with aura and loosing half my sight, I took Asprin and went to bed and tried to sleep but after my right side went pins and needles and then numb the pain hit and it was unlike anything I'd ever felt and all down the back of my head and neck I was screening in agony so took dihydrocodeine but by midnight I had lost the ability to talk and was vomiting so in a panic my husband called an ambulance... I've never felt pain like it and unfortunately a week on I'm still really affected, the fatigue is crushing me and I seem to have been left with bad tinnitus and an overwhelming feeling of being a but depressed which is not like me. Has anyone else experienced anything similar? I'm struggling to come to terms with this all being linked to these migraines :-(

Thanks in advance

x Emma x

14 Replies

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  • When you say everything was ruled out! Did they test your for Hughes Syndrome/APS, (antiphospholipid syndrome) - something frequently missed by neurologists, an autoimmune disease, often in the family other relatives with autoimmune problems including thyroid, or a history of miscarriages and strokes and heart attacks at an early age.

    Simple blood tests, (NOT lupus tests) despite the misleading name, also symptoms here.

    londonlupuscentre.co.uk/hug...

    I do suggest you insist on the correct tests being done sooner rather than later.

    MaryF

  • Hi MaryF I am not aware that I have been tested for any auto immune disorders so I will certainly look into this, thank you! I don't think I have any of the family history except my dad who had a hemorrhagic stroke in his late 50s!

  • Not everybody has a family history, however I would still get tested. MaryF

  • I collapsed after an unusually severe migraine at work 7 years ago and I am afraid that I am still suffering on and off (on at the moment) with all the above. Migraine related - well who knows -my experiences are as you describe all above but my diagnoses are different - ME (or chronic fatigue syndrome) with a functional neurological dsorder of gait...and the migraines are just my migraines...somedays they knock my legs out of action, other days not.

    Whatever the labels, dealing with the impact has the same methodology. Pace yourself well, rest proactively (so before you feel tired), practice good sleep and pain hygiene, avoid any triggers if you can work out what they are, and always go to A&E for a thunderclap-style headache.

    I found low dose betablockers as a prophylactic worked for a while with the headaches, although along with everything else they found their way back to me after a few months. But respite is good, if a bit unsettling when it all comes tumbling again. I suppose that would be the other advice - hold on tight and scream if you need to. It's a rollercoaster of a ride...

  • It is horrible isn't it! My neuro did mention that I might also have CFS last time I saw him, he seems to think illnesses such as that and fibromyalgia often go hand in hand with chronic migraines! I have quite low blood pressure aswell and I'm sure that doesn't help the faintness I feel almost daily and the jelly legs :-(

  • You have my greatest sympathy - it is so hard just to live like this day to day and feel you are achieving anything, specially with a a small child too.

    This sounds like the migraines I suffer from - a week of pain and vomiting, with my GP coming out every day to give me injections for both, as no other drugs do anything (and the injections of diclofenac work only for a short while). When these symptoms go I just feel wiped out, as though I have bad 'flu. A really severe one takes me 3 weeks more to feel recovered enough to carry on as normal. I have had various preventatives: amitriptyline, beta blockers (half inderal), topiramate (horrible side effects) and others I can't remember. They work for 12-24 months (migraines are very mild) before the migraines return. I also have Almogram and 900mg aspirin as soon as the aura starts. This can mitigate the pain but I still feel nauseous and crappy. I have buccal antiemetics to take straight away as well. I have found medicating as soon as a hint of migraine occurs generally helps (but not always). My migraines were menstrual as well as stress/tiredness based and I finally managed to get a hysterectomy and my life has been transformed. Instead of spending one week out four in bed vomiting, I am now able to work on a full-time basis. I realise I am older than you and my kids grown up, but I did try a hormone implant before the hysterectomy to test if hormone suppression would help and it did. This may be a possibility if yours are hormonal?

    I live with almost continuous headaches now that I can treat with aspirin and Almogram, but have only had a couple of severe migraines in the last 6 years since the hysterectomy.

    Ask your doctor for some sort of preventative - different ones suit different people, so you may just need to try a few until you find the right one. Oh and diclofenac (Voltarol) suppositories can be good with major migraines when injections are not available.

    I hope you find something to help you.

  • Thank you for your reply :-) that's exactly how I feel like I'm getting over bad flu! I went into work today and thought I was hiding how I felt quite well but obviously not as loads of people asked me if I was ok.

    I have been advised to try topiramate but am scared of some of the things I've read about it - how long did you last on it!? I'm really worried about the weight loss as I'm quite slim now (5ft 5 in and 8st 9lb) because I'm nauseous all the time I don't eat much! Can't afford to loose loads of weight!

    Mine also definitely have a hormonal element, my worst days are usually a few days before and during ovulation and then again before and during periods.

  • I lasted about 6 months on topiramate. I lost all interest in food and didn't really want it in my mouth. I ate because I knew I had too. I stopped the topiramate because I started to have anxiety attacks (I have never been an anxious person before) and would end up vomiting with the anxiety. I did lose weight too and was thinner than I wanted to be and I started to worry about it (I was nearly down to 7 stone - I'm 5'3") . However, since then I have met people who take Half-Inderal (beta blockers) and topiramate together and that really works for them with few side effects.

    In the end it's a question of what you can put up with most: the side -effects or the migraines. You know what the latter are like and you can always stop the medication if you feel awful and try something else, but it may make a real difference. Only way to know is to try.

  • Life must be very difficult for you with a young child to care for when you have been so badly effected by your migraines and balance problems. I suffered for most of my younger life from dibilitating migraines. I had one or two every month, wiping me out. Dreadfully painful with vomiting, taking to my bed for a couple of days. I remember often taking my young children to bed with me, asking them to play nurses and look after me or play with their Dollies until my husband came home.

    At 35 I was diagnosed with high blood pressure and prescribed Beta blockers. My life changed overnight. My migraines disappeared. I have only had one since 1987, after a death in the family, until a year ago when I had been cleaning my house with a strong bleach. In the evening I took a funny turn. My face and head feeling tingly and numb with my arm and shoulder going numb. I also found it difficult to speak. I thought I was having a stroke, as did the ambulance men and the consultant in the casualty dept. I went on to have several attacks in hospital. Had an inability to speak, form words or even think in straight sentences. I was diagnosed with Aura Migraine. I was super sensitive to light, patterns and smells. I stayed in hospital for a week and have now thrown all cleaners with bleach out of my house for fear of causing further attacks. So far, so good.

    I do hope that you improve and you find out your triggers, which may help you too.

  • Thank you! It really is a juggling act and although it's horrible to hear other people are struggling too it's nice to know I'm not alone :-) my little boy just insists that I'm not poorly now because I'm out of hospital and won't play Dr's with me haha bless him he's a bit too young to understand.

    The aura part of the migraine is awful for me too! I work for a stroke charity and my dad had a bleed a few years ago so u do try not to panic but this last time I did genuinely believe that I was having some kind of stroke or TIA. It was my first day back at work today and I still feel like there are some effects lingering, I was especially worried when I couldn't work out how many 5s went into 40 and had to use a calculator!!

    Wierd that you mention cleaning products - I just threw out some citrus anti bac wipes because they made my head burn!!!

  • I think I will always will have to be careful with cleaners, especially bleach. After my aura migraine my sister reminded me that bleach always brought on a migraine.

    I had a mild stroke about 15 years ago and genuinely believed that I was having another one and begged the doctors for some aspirin whilst they stood and watched me and talked to me. They said another man was on the ward too who was paralyzed all down one side. He had aura migraine too and they said he would recover.

    Problem is that these migraines present just like strokes so must be investigated.

    Good luck to you for the future. Hoping you remain well.xx

  • That sounds awful, Emma.

    I don't think it's unusual to feel wiped out after a bad attack, & it's understandable to feel depressed after having such a frightening experience.

    I have silent migraines too. I often get dizzy & have bouts of tinnitus. My children were very small when my attacks started & sometimes it was really hard. You can only do what you can if you don't feel well. There is nothing wrong with extra CBeebies if you need a little rest or ready meals (for the others if you can't eat them).

    Be kind to yourself at the moment. It's tempting to try & do everything round the house & the childcare & work as usual but take all the help you can. It will get easier. Try not to panic & think that things won't improve because there is every chance they will.

  • You poor poor thing. I have just had a similar one. But I know what to expect and just get under the duvet, no light, sick bowl at the ready...mind blowing agony.

    I am using the Angela Stanton Protocol, which has reduced my migraines considerably and am feeling loads better in myself. You have to cut out all forms of sugar, take extra salt and drink regular, and plenty of water. That is just a resume, but she is online. She is a neuro specialist who used to have migraines herself and has studied extensively on the issue. Her belief is that magraneurs have ultra sensitive brains and need to control their electrolyte balance.

    Good luck.

  • You may want to check out the free, online event called the Migraine World Summit from April 23-29. The top global migraine and headache experts speaking on topics relevant to us migraine sufferers: migraineworldsummit.com?afm...

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