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

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11 Replies

  • Posted

    Hi Peter

    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.



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    • 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

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  • Posted

    Peter, any updates on your sarcoidosis and headaches? My dad’s been getting paralyzing headaches now for a couple months now and he did the whole CT scan, MRI, neurologist and ENT thing and they don’t know why he’s getting these headaches every day sometimes just causing 10 out of 10 pain. He was diagnosed with sarcoidosis a couple years ago. If you have suggestions, doc recommendations, anything I would like to hear. I hope you’re doing better by now. 


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    • 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

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    • 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


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    • 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

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  • 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


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