Recent diagnosed with IIH/BIH
Posted , 3 users are following.
Hi all. I'm 37 recently diagnosed. Had bad headaches for years I just thought it was just a migraine but now they obviously weren't. Optic nerve is swollen, has the pulsatile ringing in my head, I can even hear the fluid - yes I know that sounds bizarre and the drs who I tell that to look pretty dumbstruck when I say it too but I can honestly hear it all the time and have done so for many years.
Had a L.P. done on Friday level was 28, took nearly 2 hours, lots of times of the needle hitting bone and needless to say was a horrible experience but I just kept telling myself that I had better get used to having them now that I have had this diagnosis.
The following day got rushed into hospital in an ambulance, pain in my head was horrific, I could barely stand or walk, couldn't bare the light in my eyes - truly horrible. I had my hands holding my head as it felt like it was about to explode. Stayed in hospital over the weekend - I've pack are the best help with the head pain. Just get a load of crushed ice and plonk it over your eyes, forehead and top of skull and it really really helps.
Got given morphine too regularly but for too long as they said I could get addicted - which I thought was a load of pants as even though yes I'm sure it is addictive, it was helping me to cope with the pain?!?
Anyhow they think it was a bad reaction to having the L.P and I was allowed home the beginning of this week.
I have been signed off work for 2 weeks since my diagnosis on 24th july. Does anyone know how much longer I am going to need off? I'm still rather confused and feel like I'm walking on jelly, and exhaustion doesn't come close to how tired I feel all the time. I work in an office have 2 computer screens and have to read off a very small print on paper (which is what made me go to the optitions in the 1st place as I couldn't read it!)
Also how does sick pay work? I have no idea about any of this and I'm panicking about money etc, which I've been told not to get stressed as it can bring on another attack, but I can't help it..
So can someone pls advise how much more time I should take off???.
Thanks guys & much love to all my fellow sufferers xx
0 likes, 3 replies
Aggers19
Posted
sparkleyeyes06 Aggers19
Posted
Hi,
So sorry to hear of your diagnosis, it really is an awful thing to deal with! LPs are never fun, especially if they struggle with them, I have mine done under x ray guidance now as they can see where there going! It's been a bit easier! Although afterwards you can experience a low pressure headache which can last around a week and is only eased by lying flat! 😐 they are very debilitating! With regards to the time off, it really is up to you, go back to work only when you are ready and be totally honest with your employers, you are covered under the equality act for any reasonable adjustments to your job. The pay side of it, unless ypur company provides there own sick pay, would be statutory sick pay, this is arpund £83 a week. Check with ypur employers as to how this is paid. Try to rest whilst you can and don't rush things. This diagnosis takes some getting used to! Also contact your local job centre and council, they may be able to assist with bills whilst you are off, it took me 9 weeks to feel ready but everybody is different,
Good luck and take care xx
LP1981 Aggers19
Posted
I wish there was an easy answer to this question but there isn't. Everyone is different and dealing with the pain and the side effects of medications can be relentless. I had post lumbar headache as well, they are exponentially worse than IH headaches. Not everyone experiences the post lumbar puncture headache.
Look into family, medical leave act at work. They may not pay you if your not a salaried employee but it will protect your job. And sick pay should be able to work.