Sarcoidosis really sucks
Posted , 6 users are following.
Hi all, does anyone else have headaches that floor you, add in some constant tinnitus, persistent upper respiratory infection (staffocous Sirius) that blocks off upper airway with very large hard crusts of,,,, well,,,,, snot.
My neurologist started me on botox (for migrain) but Im in agony,,,, it's 31 injections in the head and neck and after the second set of it on December 19th iv decided it doesn't work, (maybe because I don't have f@@king migraine) I have had months now of hell in my head, does anyone else have neuro symptoms like this and if so how do you cope with it,,,, honestly I'm at my wits end now,, after the last 3 months or so not even my family can put up with me
0 likes, 11 replies
tangles peter52775
Posted
I am sorry to hear of your discomfort.
It may not be sarcoid that is causing your pain.
Have you had a head scan done to check for other things.
Regards
Tangles
peter52775 tangles
Posted
Yes iv had full body Mri done loads of times for strokes, lumbar puncture for infectious diseases, I have a ILR inside my chest recording my heart if it even farts out of line.
Over the last four years iv gone down hill rapidly, iv had lung Sarcoidosis for over12 years now but it's spreading fast,,, it's now confirmed in my skin, eyes, nasal cavity, and is suspected in my bowels. I have several lesions in and on the vertebra in my upper neck, they suspect they are sarcoid granulomas but won't biopsy to confirm because of where it is it's probably the cause of my left side weakness/numbness and may explain some other problems as well,,, it's horrible this disease
tangles peter52775
Posted
Sounds like you have covered every aspect.
I wish you improved health.
Regards
Tangles
peter52775
Posted
lauren57354 peter52775
Posted
Lauren
peter52775 lauren57354
Posted
hi Lauren, sorry to hear about your dad,,, I'v been like this for 5 year's now and it's been hell, my neurologist is still no clue whats going on, after countless Mri, CT scans and heart recorders and all apparently clear he's come up with FND which means functional neurological disorder.
With this all test's come back clear but the sensations are very real and very painful.
I still tramadol for the headache and others aswell but still in agony most days,,, hope this helps
Guest lauren57354
Posted
Hi Lauren
My daughter suffered with debilitating headaches, with no apparent cause, she was bedridden and couldn't move they were so painful. She was put on 2 x Amitryptaline a night and they seem to be working.
Best wishes
Dee
peter52775 Guest
Posted
Hi, my neurologist put me on the strongest dose of amytriptylene which is 100 g at night which was
Good initialy and now I take epilem twice daily and I have to say its much better, even so I do still get days that it still floors me,,, it's not very nice to go through
Cosmic-al peter52775
Posted
Hi Peter, how r u getting on?.
Living the exactly same symptoms! Sarc trigeminal neuralgia/neuropathy/headache
Botox less than a week ago, feel worst I've ever been? Where's your path taken you now for pain? Regards x
peter52775 Cosmic-al
Posted
Hi, I've just opened a new discussion if you want to look at it, I've just had a long stay in hospital and this is what they're saying to me now
david03145 peter52775
Posted
Hi Peter, have had Sarcoidosis in my chest confirmed by biopsy about 7 year's ago. Doctors are still struggling to diagnose collapse leading to imblance/ severe headaches of 4 years ago. Also add no feeling in my feet (Periphial Neuropathy) and can say life is difficult and painful at the best of times. There is a suggestion that migraine, which may be unrelated to possible Neurosarcoid in my brain, is the cause of the headaches.
The only thing l have found effective against the headaches is Acupuncture and on occasion lots of red wine..... to the point of becoming comfortably numb!
Good luck in your search for answers
Kind regards
David