Hi all.. I have been struggling with a health problem for two and a half years now which has cost me my job, caused me to have alot of time of sick and to be honest, taken over my life.
Im about 4 months into a new job where I have just about managed to get through the day and had my 3rd major flair up.
I'm really hoping to find others that have experienced something similar and managed to get their life back on track..
Ill talk about the symptoms, what the neurologist thinks it is and what treatments I have tried..
Symptoms.
It feels like an event happens where I'm using a pc and my vision goes blurry. This is then accompanied by a squeezing in my head my someone has a pair of tweezers pinching my brain. It also comes with heavy pressure in my chest and alot of nausea feeling.
Ater the 'event' my neck is really sore, I feel nauseous whenever I look at screens (phones a little easier than a big screen) and it seems to be text which is the main cause with video conferences being OK. I also get extremely nauseous doing everyday things like the dishwasher, brushing my daughter's hair.. I also get alot of pressure and ringing in my ears. The last time these symptoms kept me off work for almost a year and I'm really worried I'm going to lose my job again. If I try and force it I get alot of pressure and pain in my head and feel so sick.. I'm also getting daily migraine auras.
Diagnosis
I went private to see an nuro and have had maybe 6 appts with him over the last two and a half years. His diagnosis is muscle spasm headaches but so far nothing has helped and I feel worse now then when I went to see him.. he's also mentioned photophobia as one of the symptoms but not said why I'm getting it.
Things I have tried.
Anytriptalyne for a long time and quite a high dose. I have had a brain MRI which is apparently ok and I am waiting for results of a neck MRI. I have been on the emergency waiting list for nerve blockers since Feb but this hasn't happened... I'm currently taking beta blockers to try and get the migranes under control. Before the beta blockers I was taking riboflavin and coenzyme Q10 to try and get the migraines under control.
The 4 weeks before last Friday when the latest 'event' happened was the best I have felt since it started but now I feel back to square one. I started planning to actually enjoy life and signed up to dating sites, started exercising and all the things I just haven't felt well enough to do over the last two and a half years.
Any advice would be greatfully received from a desperate 36 year old single dad.
Thanks
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Bbtb321
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Hi there, I also suffer with migraines and associated vertigo and my vision blurs with computers and also nausea, in fact I feel all those symptoms typing this. I totally sympathise with your anxiety over the prospect of losing your job due to the illness, and dealing with everything whilst feeling so debilitated. I’m sorry I can’t be of more help but I just wanted to let you know that you’re not alone in feeling this way,Louise
Hi Louise thanks for taking the time to reply. It's really horrible isn't it. Does it come and go for you? Have you found any solutions? No I'm currently on beta blockers to help with the migraine auras which really seemed to be helping. For about I year j was taking 6 cinnerazine tabs a day for nasuea with no real difference.. they did help with the head pressure but the Dr said to start coming off them..
It’s good that something is helping with the aura. If you are still having sickness then I’d def look into prochloperazine. They take the sickness right away for me, and I’m pretty bad with my condition as I have long term migraine vertigo. But when I get sick from over doing screens etc they work a treat! Also betahistine, I wouldn’t be able to travel down the road without the two medications. In regards to glasses I have special lenses that an opticians in Canary Wharf recommended as it’s common for pc users to have vertigo with screens, I’m not sure what they are but they are very thing and don’t have much of a curve on the lense which distorts your vision at the sides and makes you feel unbalanced if you suffer with vertigo. I couldn’t be without them. They mentioned that larger frames lenses also exacerbate the problem (worth noting).
Oh, that all sounds very familiar to me , except I wasn't always seriously affected, and not all those symptoms always occurred together. I do get aura migraine, so maybe some of the symptoms were related to being a 'migraineur', but in my retrospective estimation, most of it was attributable to my neck, with which I had a fair bit of trouble over the years, starting in my mid twenties. I remember not really being aware there was a problem with my neck at that time, but I was fully aware of dizziness, photophobia, difficulty with focusing (both mentally and visually) and slight nausea.
Eventually, by my mid thirties, and having been seen by various hospitals and offered various drugs (none of which I took), I got thoroughly fed up and tried cranial osteopathy privately on the recommendation of a friend. That turned out to be the most effective treatment of all; I went to a very good cranial osteopath about every six months, usually just one visit, and he'd treat my neck and head (and treat everywhere else too) and keep everything functioning, so I would strongly suggest you find a reputable cranial osteopath and try that.
I don't go to the osteopath any more, he's retired and my bones are too fragile to take the treatment these days now I'm old, but I do miss the relief a treatment brought. Now I have some acupuncture periodically, and that can be quite effective for any pain and stiffness, not so much for visual problems. The aura migraine I got rid of completely since I stopped eating cheese and most other dairy about 4 years back now, which was an unexpected and welcome side effect of changing my diet for other reasons... but I do still get headaches when my neck is irritable...
If you decide to try cranial osteopathy, I really hope it helps... good luck.
Hi thanks for the reply. I straight away has a look for one and found one who mum knows the wife of so I have contacted them. They seem to think they can help so fingers crossed!
Hi! I’m probably talking a load of rubbish but I’m wondering if it’s some kind of migraine. I suffered really badly with migraines when I was younger. Mine was terrible pain though. I’ve been through the change now and don’t get them anymore. I do get the occasional aura migraine which seems to come on for no reason. I’m wondering if stress may play a part as well. Having a young child and rushing around to get her off to school or nursery can be stressful as can keeping up with the housework as well as working. When you weren’t working for the year you were probably a bit stressful about the fact you should be working. It’s a viscous circle. And the other thing. The screen on a TV or Computer can be a well known trigger for setting off migraines.
I’m just talking off the top of my head here. It may not even be migraines. Just trying to help.
Thanks yes both neurologists I have seen think migraines are playing a part and have given me beta blockers to help them. This is also helping with the stress of dealing with it all! It happened right as I was starting to feel I was getting my life back so I was in a pretty good place 😭
Maybe have a weekend just concentrating on your Daughter. Have you got a seaside near you or a zoo. Maybe even go for a walk in some woods with her. Get away from things you know you’ve got to do. It will wait. Have you got someone who can give you a hand if only for a little while. See how you feel after you’ve done something like that. Really enjoy the weekend. If you feel better at the end of it you will know it’s probably stress. I was lucky that I could work at home with a job I wasn’t pressurised at all with. It was actually very mundane and repetitive. Sometimes a pressure job is just not worth the stress. Ok I didn’t get paid much but we survived. My Husband was the main earner. My money was used to keep the Children clothed and me of courese😁 and also pay for Christmas and Birthdays. Of course I could still get stressed but I could wind down. If it is some kind of migraine then maybe they will come up with a treatment plan for you. Good luck and try to keep calm.
Thanks yes I live right by the beach and have been doing 5 mile walks down it nightly this week and pretty much just been relaxing in the garden in the day, I haven't been able to work unfortunately..
I hope resting away from it all helps. You are lucky to live near the beach. I’ve gotvto go about 15 miles to my nearest. I love the sea. It’s so relaxing.
Just curious have you seen a Neuro-Opthomologist? This is a doctor that only focuses on the brain and eyes. Or have you had your vision well screened. For why your vision becomes blurry. If he said you have headaces, not migraines they are treated differently.
I take a over the counter migraine with caffeine and quickly drink a cold can of pepsi. They can often stop the headace from becoming a migraine.
I have never heard of one to be honest.. I have seen a normal nurologist privately 4 or 5 times now and he's not suggested it.. I have had 3 eye tests at the opticians as well so didn't seem concerned as well as a mri
Just be best if an MD sees your eye to give you the clear. It is very hard to get into a Neuro-Optho. There are many things you can do to help with migraines if that what it is. But make sure an eye doctor clears you first.
Oh bless you. I really feel for you. Having been blighted with chronic migraine for the last 6 years I feel like I have no life. It does sound like your symptoms could be migraine related. Also, please don’t think I’m being flippant but could it possibly be anxiety? Anxiety can cause all manner of symptoms.
Hi thanks I definitely have had issues with anxiety over the years but this definitely doesn't feel like it, it feels physical and from my neck.. the nuro diagnosed it as muscle spasm headaches... Beta blockers have been great for anxiety levels if nothing else..
Beta blockers really helped me too with the migraines. Anxiety can do funny things to the body. I watched a programme called diagnosis detectives & there was a guy on there having up to 27 seizures a day. They did scans etc & couldn’t find anything wrong. Turned out he had PTSD from something that had happened years ago. He got therapy & the seizures stopped. Not saying this is the case with you at all - it’s your body & you know how you feel. It’s horrible when you feel like that & there doesn’t seem anywhere to turn. I really hope you get some relief soon 😊.
Hello, you mention pressure in the ears and ringing, assume you've been tested for Ménière's disease which also causes vertigo and nausea? Just thought I'd mention it. I have been suffering chronic migraine since January and currently signed off work worried when I will feel ok to return so can empathise want your story. All the best.
Hi Cara I was given 6 cinnerazines a day to help with the sickness that they also use to treat Menieres. I feel like it helped with the ear pressure but not much else to be honest. I have had to stop taking them and the ear pressure is definitely worse again!
Sorry your experiencing that, its pretty horrible! Whats your main symptoms?
Hi. My main symptom is a constant daily headache which fluctuates in severity depending on the day. Secondary symptom is dizziness which am told is due to continuous/ chronic migraine. Can't imagine ever feeling normal again at this point!
Thats horrible... What meds have you tried? I am wondering if I should try a different one. I have also bought a pair of FL-51 rose tinted glasses which are recommended for migraines and am giving them a try. They seem to help with the light a bit so far (Day 1)
I've tried all the standard preventatives and recently CGRP Injections at huge cost privately, I'm about to do my third injection but so far it hasn't worked which I'm gutted about
I get these exact symptoms you describe. Good to know I’m not alone. It’s been recommend by others to get glasses with tints or blue light blocking glasses - Which may help with triggers such as bright lights / computer screens and reduce blurred vision etc. Also, a work station assessment which will look at how your work station is set up.
Sorry for the delay in replying. I goty work to buy me a benq eye care monitor with built in blue light filter. I have been off this be week on leave but still felt as sick as a parrot all week..
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