Anybody experience silent migraines like mine?

I was wondering if anybody has experienced silent migraines? I have had migraines with the whole headache, light sensitivity, nausea, vomiting etc since I was 8 years old. I've been through times of frequent migraines of 2 to 3 a week at times in my life and other times they have been one every couple of months as I've got older. I am now 42 yo. Sumatriptan has been really good for those migraines with the headache.

Lately I am getting daily nausea, dizziness when standing only. I also get daily numbness in my limbs, frequent urination, fatigue and a very long list of neurological symptoms which can happen in any position standing or sitting. I have loud ringing in my ears a lot of the time also and some hearing loss.

I have been told by a Neurologist that I have a constant migraine with the neurological problems and I am not allowed to use Sumatriptan unless I get a headache migraine. I have to consider using a preventative treatment. I have spent 2 years now with limited activity due to these possible silent migraines.

I have lived with Rheumatoid Athritis and other chronic health issues for the majority of my life and was getting on top of my multiple illnesses causing me disability until all of this started. I feel frustrated and alone in that I just don't understand how you can have ongoing Neuro problems every day but no migraine headache to follow. I have found I am worse in the morning and improve a bit as the day goes on. I sometimes get a hormonal migraine and do get the typical migraine symptoms as well as the nausea which is constant then not just when I'm standing up. I use my Sumatriptan for that which is mostly effective.

Anybody out there experience this?

17 Replies

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  • Hi there, just to rule it out, you should check you do not have Hughes Syndrome, some people with migraines like this, turn out to have this condition, a long shot, but worth a look. Mary F x

  • Thanks for the reply Mary F. I have not heard of Hughes Syndrome and will check it out.

    Thanks again. Karryon.

  • Yes, I have similar symptoms to you and I have also been told that I have silent migraines by my consultant audiologist - and I also have sumatriptan for the migraine headaches. I find it very scary especially when I get the dizzy spells .....

    I also have systemic scleroderma, Raynauds and other auto immune conditions ....

  • Anteater, can I ask you do you feel sick and dizzy most of the day, everyday almost and do you take a preventative? I can't do much but sit in my recliner chair most days as the nausea & dizziness is always dominant on standing but eventually settles when sat or laying down. How do you manage? Anything that helps you?

    I also have multiple autoimmune diseases and Raynaud's.

    Thanks for the reply, Karryon.

  • The National Migraine Centre has been doing a study to look at the links between this sort of migraine and Hughes Syndrome: here is an article:

    telegraph.co.uk/health/4400...

    Mary F

    ps I have this myself also!

  • Yes I have similar symptoms without a full blown headache plus a constant buzz in my head which sometimes sounds like a radio signal inside my head. I feel tired all the time now and depressed as it has got worse. I used to think I just had tinnitus which came on sometimes but in past two years it has really got much worse and is not just tinnitus.

    Told by neuro that I have Migraine Variant Syndrome and have been given Pizotifen to help me sleep but does not take away the symptoms. It is truly awful, worse in the morning and seems to be better when I can go out, but comes back at night really very loud.

    Cranio-Sacral Osteopathy gives some relief and I am trying that at the moment, but any other advice would be really helpful. Thank You.

  • Yes I can totally relate to the noise level with what they call tinnitus. I find it's awful when I wake up in the morning to the load buzzing noise & just wish it would go away.

    I was not happy to hear I have hearing loss particularly bad hearing loss on the high pitched noises.

    I didn't really ask the Neuro exactly what to call my migraine syndrome but he explained it was not that common & it is mostly Neurological symptoms.

    I haven't found anything to help yet. I take Riboflavin 400mg a day, Wild Krill Oil 1000mg a day & am hoping to start on Magnesium, Vit D3 & Co enzyme Q10 but they all add up with costs. I would also like to try Acupuncture. Take Care.

  • Hello

    .

    I know what you mean. I do not have any hearing loss yet, so I am fortunate. It does not appear to be related to my hearing and I do not know how to cope sometimes. It seems worse when I just try to lie down. Waking up and going to sleep are the worst. It can change - like a radio signal in my head almost - do you get that? It feels almost like I have some kind of chip in my brain! Does if feel like its in the centre of your head rather than a ringing in the ears which is tinnitus. Tinniutus usually comes and goes, or calms down at least with sleep. This buzz is now there all the time. The neuro just keeps saying its a neuro symptom of some kind. They really do not know.

    I have some kind of chronic pain syndrome which is also difficult to deal with but could be related. Medication for that such as Oromorph makes it worse. I take Omega 3 oils and Vit C plus a multivitamin. Yes it does get expensive but some stuff you can get through the NHS and you should ask your GP about it. They are more sympathetic than consultants to that treatment. I have got some relief from Cranio Sacral Osteopathy but get a good therapist. Are you in London? I have a great Shiatsu practitioner who has a private surgery in South East London. It is worth a try as well. Never found acupuncture helped me but it differs what helps with different people.

    Also my neurologist did give something called Pizotifen. It is a antihistamine based sedative which does help me slee and not addictive - just strong. In fact I just doubled the dose as he said last night, and, have been asleep all day, when I got your message. Good to find a chat site that is really genuine.

  • I'm actually from Australia so there is the time difference to consider. I found this site under a week ago & found that there seemed to be a good spirit amongst the community.

    I take a lot of medications for my arthritis & other auto immune problems. My main drug is Rituximab or Mabthera with Methylprednisolone which I've been on for 5 years now & has been life altering. I was going along really well but just under 2 years ago I started to get symptom after symptom until I can no longer function.

    I have trouble with being in a standing position with the dizziness & nausea but the light sensitivity, tinnitus, bladder problems.........etc is there a lot of the time regardless of body position. I can use Sumatriptan if I get an actual Migraine headache but not when I only have the Neuro symptoms. I do have good & bad times. I'm going through a bad one at the moment.:-(

    I have just learnt after a lifetime of having Migraine headaches that it is actually a neurological disorder. I had an MRI for Multiple Sclerosis diagnosis & was told the lesions were probably from my migraine history. I then read about migraines & learnt a lot more about how they work. I understood the whole Aura thing before migraines but I still cannot get my head around having a migraine without a headache all day long & almost daily as well. I recently ceased my anti inflammatory & it seems to have exacerbated everything for 2 weeks now.

    I need to consider a preventative but am nervous as I did try when I was in my late 20's & had respiratory arrest & this was possible being an asthmatic. I've also heard that a lot of the beta blockers & anti convulsants have horrid side effects. The Neuro wants me to have tests for Autonomic Nervous System problems such as POTS & Postural Hypotension first as I do display these problems & he wants to eliminate those before putting me on any preventatives.

    I understand pain totally. It's something you hate but have to find ways to live with it or it will take you backwards. If you try meditation & I find music is what helps my pain. If I'm struggling I listen to music as it makes me happy & being happy can ease the pain.

    Take Care.

  • Dear Karryon

    I do sympathise with you. I am 59 but all this migraine type syndrome started up 10-13 years ago when I stopped taking Seroxat and anti-depressants. I stopped them too quickly because my GP at the time said that was okay. I then ended up on other pain medication and diazepam. It has really escalated in the last few years.

    The pain is a result of surgery which also began around the same time. It has increased and different types of medication have been tried but really nothing helps - just seems to make it worse. One pain doctor has told me it is all to do with the Central Nervous System and recommended I just detox myself off all medication and see what happens. I am trying that route, but as you get older you do feel your body cannot recover completely.

    I am having a terrible weekend myself. Just been asleep for two days because of the new dose of Pizotifen. So I am going to cut it back tonight to half again. At least I do get some sleep with it, Managing to go out an do something also helps. I write a lot - have you tried that - doesn't matter if it is any good or not - just keep a journal of your feelings - when you feel like it. You would be surprised how it begins to mount up and you can edit the best bits maybe into a poem or short story.

    Yes - I am a Buddhist and getting treatment at a low cost complimentary therapy clinic which has really helped me cope. A combined approach works as well and, for some people they can just take the complimentary route. It mainly deals with people who are HIV positive so they are very experienced with these kind of syndromes that doctors now talk about. There are a few places around which do not charge or give concessions to low incomes.. Really the only things that keep me going sometimes. Practising meditation is a struggle with the noise in my head. which is just becoming really bad, although I am learning new practises to deal with pain in particular.

    There are a few other posts on main blog. Do keep letting me know how its going.

  • Hi Karryon

    I was diagnosed with silent migraines a few years ago although I also get the headache ones as well. I went to the doctor with frequent nausea, dizziness and visual disturbances which I put down to the long-term use of medication for chronic pain. Having come off the pain medication I still get the seasickness - though not as often now. The flashing lights appear so often that I tend to ignore them now. I've had numerous checks on my eyes and MRI scans of my brain and there is nothing sinister going on.

    I've been having botox for my facial pain for almost 3 years, and it's had the effect of turning down the migraine headaches. More recently I've had physio on my shoulder and neck and I don't feel as dizzy. I think my neck and spine have a big part to play with the migraines. I know that if I can keep on top of the pain I am less likely to have them.

    I agree with you about the sumatriptan- there was no point in taking it because it didn't work and didn't have any effect on the silent migraines.

    I sometimes find the silent migraines frustrating because they last for a long time, and although not actually ill as such, I feel weird. But in some ways it's good to have a diagnosis. When I was younger I used to have days where I just felt sick, dizzy & washed out for no reason & I think people thought I was making it up.

  • Hi teadrinker,

    I have just gotten progressively worse in the last 6 weeks. I had Vestibular Testing or Inner Ear testing & immediately afterwards it caused really loud tinnitus of varying levels with increased nausea & dizziness. Then a week ago I was hit by 14 hours of Vertigo where I couldn't even be upright and had to lay down all day. I do wonder why the tests exacerbated my problems. I've never had such loud tinnitus. The day I had the Vertigo was miserable but I noticed that the day before (when I was in hospital overnight for other tests) I had difficulty conversing with people as the room was set up where I had to turn my neck to talk to people & I started to feel more dizzy & nausea then the tinnitus started to escalate to all different levels of ringing & buzzing. I had an actual migraine headache days earlier due to hormones where I used my Sumatriptan & got relief. I am still curious how I could always (daily) have problems for 2 years now & am still not totally believing I have had a silent migraine for the 2 years. You would have thought things would get better after having a head pain migraine & settle down but instead I always have the daily array of symptoms & never have any relief. I have decided that I am slowly increasing my Endep or Amytriptaline to a higher dose so my GP has prescribed 25mg tabs for now. I've been on 10mg. I hope & pray this will help me. Thank you for you reply previously as well.

    Karryon

  • I have also suffered from migraine since I was around 8, but they started off as excruciating headaches. When I got older they turned into silent migraines and I still get them to this day. They mostly come in the morning/afternoon with aura, confusion, dizziness and sometimes depression/anxiety and feeling sick. All I can do is take paracetamol and rub my neck/ shoulders and that sometimes helps shorten it's duration. They seem to pick and choose when they come on but lately its been 2-3 times during the week especially when I'm hormonal

    and lately its been happening in evenings too.

    I also suffer from occasional hives, anxiety, dyspepsia due to over production on stomach acid. I also have had bouts of vertigo and breathlessness over the past few months.

    Reading these posts have made me wonder if any or all of these symptoms are linked in any way? Last time I went to my doctor about it, she done next to nothing. I had to come off birth control as it made my migraines unbearable and debilitating. I'm glad most of you guys have professional help and are making me realise I should really go get it seen to as I'm 26 now and the migraines aren't getting any better

  • I can relate to a lot of what you have said. I just don't seem to have any days without symptoms. I have decided to seek further help and see an ENT or Ear, nose & Throat Specialist (here in Australia we call them that) as well as getting a 2nd opinion from a Neurologist.

    I have been recording a diary of my actual headache Migraines & they routinely fall during my period. I was thinking if I could take the pill constantly & not have a period I would not get the headache type migraines but I'm not allowed any birth control pills anymore after having Pulmonary Embolisms. I've also been told this wouldn't help with either the Silent Migraines or the Headache Migraines.

    I've previously tried Propranolol but had respiratory arrest & I also have Raynaud's so shouldn't take that drug. Every drug I look at seems to have awful side effects. I am already on many harsh drugs for my autoimmune problems & also Methylprednisolone which packs on the weight easily & many migraine preventatives list weight gain as a side effect. This is why I am seeing some specialist advice now in the coming couple of months as I feel I am alone trying to sort all this out myself.

    It's funny really because I've had the headache migraines all my life & they have been horrendous at times & yet I understand them & somehow manage better than living with a daily silent migraine with nausea, dizziness, tinnitus, pins & needles, loss of vision, fatigue, itchiness that comes & goes & so on..... I guess I know the headache migraine goes away eventually but the silent migraine is with me everyday & I'm starting to think it will never leave me alone.

    I really think you should see somebody about your symptoms. I know my breathlessness on mild movement was my first problem 2 years ago to take me to the doctor. I think you should be sure you are not having chest / heart / blood problems with this symptom. I do sympathise about the Vertigo as well it's such a joy to have. :-)

    Karryon

  • Thanks for your info, it's great to be able to talk to people who can relate!

    Talking of birth control, have you heard of Dim Plus? Since I wont take birth control, I tried dim plus to see if it would help my hormonal acne and migraines, and for the two months I took it, my migraines were not gone but greatly reduced. Since running out, my migraines have been happening like they used again. Dim plus is an all natural supplement made from cruciferous veg to help people with hormone imbalance, menopause symptoms and is supposed to help reduce hormonal imbalances that lead to cancer. There are hundreds of reviews on amazon if you want to look into it. I may be onto something here.. Gonna order another tub and see if I notice the difference again.

    Liana.

  • Thanks for telling me about Dim Plus. I've read a bit about it & it sounds great from most people's reviews. How many do you take? I have to find them cheap in Australia as I will probably need more than the 2 a day. I noticed some people are on 6 a day. It is certainly something I will be looking into further & probably give it a try. Thank you so much for that valuable information.

    I have wondered all along if hormones could be playing a role in my daily dizziness, nausea etc & would really like to try natural products first. I've been on Wild Krill Oil 1000mg, B2/Riboflavin & Magnesium (Citrate) 600mg, Vit D & they all cost a fortune with no improvement. I would definitely continue Vit D for my Osteopenia & Krill Oil for my Arthritis. I will continue the other for a full 3 to 4 months to ensure I have given them a good chance to work but if no benefits occur I will have to cease them.

    It's so familiar how your symptoms of nausea & dizziness are typically in the first part of the day. It's always the same for me. I also am worst in the mornings & struggle to get going with the nausea on standing ruling me to sit back down & it passes until I get up again. It feels like such a waste of my life.

    Thanks again, Karryon.

  • No problem, natural is best I find and I've just ordered my second bottle of Dim Plus so will keep you updated on it. I took two a day but will try 4 a day and see if it improves. The amount of research I do is unreal, as you probably know your self, and I've even read up on weather changes affecting migraine sufferers, as I get more migraines when it's warm and muggy or stormy and warm outside. A lot of people have noticed this too.

    Thanks for your feed back and I will be interested to exchange experience on the Dim Plus route.

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