Desperately in need of help.. migraines, photophobia, sickness

[Bbtb321]

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 tired.

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

[Cat00]

Do you mean Amitriptyline? Have you compared your experience with cluster headaches?

Obviously none of us are medical just migraineurs, but Cluster headaches are more common in men and tend to start in your 30s. They tend not happen for months at a time, sometimes years and then when they come they come in batches. They are excruciating and difficult to treat and reasonably rare.

Having said that I've met a few men over the years who have them whereas I've never met anyone in person who has chronic migraines which I have so they can't be that rare.

[Hellytheelephant]

Hi, I can't really say that I have 'got my life back' as I have multiple health issues, as well as a lot of migraines, but there is stuff that helps.

re the photophobia.: Have you tried dimming your computer screen, and/or wearing tinted glasses? I do both of these and it does help a lot when I have to look at the pc.

The nausea sounds a lot like the sort of seasick feeling I get with a migraine. Until I was prescribed BUCCASTEM Buccal tablets I was also vomitting a lot- it works for both nausea and sickness.

Wishing you all the best,

H

[DRunnerchick]

Bbrb123,I don’t have all your symptoms but I ado have persistent, chronic migraines treated w/ supplements of B2, COQ10, Magnesium Cotrate, topiramate and Aimovig.. I also have a very rare disease called Stiff Person Syndrome Disorders. You can try blue blocker glasses when working on the computer. Also, try extra lubricant eye drops (not Visine!!!) perhaps something like Blink or Systane✨

D🏃🏽‍♀️