Hi I’m new to the group, I was diagnosed with chairi type 1 a few months ago. The neurologist referred me for a lumbar puncture as I was showing symptoms of ms (thankfully it was negative) but now I’ve basically just been left and I don’t know who I am supposed to contact. I’m going to my gp to try and get some help and information. Basically just looking for a bit of advice I have episodes usually if im too warm or standing for to long. Where I get faint and heavy in my legs with shaking and palpations etc. Though recently I’m struggling with what I can only describe as exhaustion and stiffness in my joints. The pain behind my eye comes and goes. Is there any medication the Dr can give you to help with this or is just pain killers and do what you can? Sorry if this doesn’t make sense just trying to get a hang of things as it’s starting to impact on days with my son I don’t want him to miss out because I’m to sore / tired to do anything with him most of the time.
Hi Finixx, you should consult with your neuro. Constantly taking pain killers put your kidneys in danger of damage. You have to work with your neuro to decide on alternate treatment preventing pain. I for example am on Remeron / I use generic Adco-mirteron . The active ingredient is mirtazepine and it works in the brain to prevent pain. Also Lamicton for balance and pain. For palpitations I use cardiocor. In other words, use safe medicines in co-operation with your neuro and gp. Work on planning your life around what you are able to handle, no overloads. Furthermore, no lumbar puntures now you know you have Chiari. It can cause a further displacement of the tonsils. Standing too long causes stress on the spine which will affect you negatively as a Chiarian. All the best.
Hi a couple of days after I posted this I ended up in a and e (I had a bad turn and didn’t know if it was chairi or not) . I’ve been reffered back to my neurologist so I’ll speak to them as soon as. Thank you
They sent me for a lumber puncture after I’d been diagnosed. I was warned it may make things worse though tbh I didn’t realize how much worse.