1. < Brain & Nervous System

Pachymeningitis: Anyone else?

Posted by cgrammie2 @cgrammie2, Aug 11, 2012

We live in Tennessee and my husband has been dia, with a very rare disease called pachy meningitis he is being treated in Nash. Tn. took a long time to get a name for his diease most people and Doctors haven't ever heard of it he is looking for someone to share stories and treatments with being is has no clinical studies it is so rare! has anyone ever heard or know someone that would be willing to share information about this disease even if you are a professional neuro doctor is ok!!!

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ewebster1981 | @ewebster1981 | Apr 9, 2019
In reply to @gigirambo "Yes, Was diagnosed first of April. Had been suffering with headaches that became more and more..." + (show)
@gigirambo

Yes, Was diagnosed first of April. Had been suffering with headaches that became more and more severe. My internist prescribed a CT scan and immediately sent me to the ER. A lumbar puncture was done and I was admitted into the hospital for more testing. Had MRIs - with & without contrast- and was started on antiviral meds as they weren't sure what my diagnosis might be. After release from the hospital, I was prescribed steroids for approximately 2 weeks and referred to Emory Hospital in Atlanta, Ga for further testing. Met with a Neurologist there that wanted all MRIs done once again....and concurs with the original diagnosis of Pachymeningitis.
Headaches have lessened in severity and manageable with OTC meds ( but can't lean over as pain becomes severe) I am to return to Emory in 3 months to have MRIs repeated. My question is what should I be doing to lessen the chance of this getting worse again and if diet, supplements, etc might help in treatment? I understand that there is not much info on this condition, but feeling like I'm on a roller coaster. Dr.s have told me to take it easy and rest over the next several months and avoid stress as much as possible. Trying !

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Did anyone have a high white blood count

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ewebster1981 | @ewebster1981 | Apr 9, 2019

How did you get the doctors to listen to you ive been to er 2 times this week for migraines and today they sent me home and my head is still killing me

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Moderator
Lisa Lucier, Moderator | @lisalucier | Apr 15, 2019

A number of you have posted about your experiences with pachymeningitis, and it would be great to hear an update from you all. I think your responses will benefit many members in this discussion.

@ewebster1981 - how are you doing? Did the migraine subside you had last week?

@tracyb - are you still in the wait and see mode you mentioned previously? How are you doing?

@megmor - are you still experiencing some of the improvements you saw with the steroid treatment?

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2 replies
tracyb | @tracyb | Apr 20, 2019
In reply to @lisalucier "A number of you have posted about your experiences with pachymeningitis, and it would be great..." + (show)
@lisalucier

A number of you have posted about your experiences with pachymeningitis, and it would be great to hear an update from you all. I think your responses will benefit many members in this discussion.

@ewebster1981 - how are you doing? Did the migraine subside you had last week?

@tracyb - are you still in the wait and see mode you mentioned previously? How are you doing?

@megmor - are you still experiencing some of the improvements you saw with the steroid treatment?

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Still in Wait and See mode. Having MRIs every July to check for progression. Next MRI is July, 2019. Regarding symptoms, my mild 24/7 headache may be getting a little worse, my eyes feel "heavy" and my stiff sore neck is worse (although I do have facet joint disease which may be a problem with the neck). Will be interesting to see if my next MRI shows progression. IMO, I don't feel as well lately, but my symptoms still don't warrant steroids, etc, but we will see when I meet with my neurologist. If there is progression, that could change my mind about treatment.

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megmor | @megmor | Oct 9, 2019
In reply to @lisalucier "A number of you have posted about your experiences with pachymeningitis, and it would be great..." + (show)
@lisalucier

A number of you have posted about your experiences with pachymeningitis, and it would be great to hear an update from you all. I think your responses will benefit many members in this discussion.

@ewebster1981 - how are you doing? Did the migraine subside you had last week?

@tracyb - are you still in the wait and see mode you mentioned previously? How are you doing?

@megmor - are you still experiencing some of the improvements you saw with the steroid treatment?

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Hi all I hope you are all getting on ok .I have managed to taper off steroids in April ,so i have just been on mycophnooate since ,so my head made a significant improvement from the starting point of treatment at the begining of Jan 2018, the next MRI in April 4 months after starting showed massive improvement ,but not complete resolution.I have had 4 MRIs since and it has remained stable ,I've had two bouts of headaches and face pain both lasting 6 weeks ish and then it seems to resolve and the scans always say no significant change so who knows what the headaches are about ,so that's me stable ,I'll take that ! I Would be keen to hear how you are all getting on Meg

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helena49 | @helena49 | Jul 17, 2020

Hi..I'm 71, I live in VA and was diagnosed with Pachymeningitis in August 2018, at Wake Forest. Treatment with steroids almost killed me. The only symptoms I had was loss of hearing. It was so drastic an MRI was ordered for my brain. Thus the Pachy diagnosis....fast forward to 2020 I got a second opinion at Duke and was told it was not Pachy, but a brain infection. It went away and has now returned. Still, I have never had headaches, very little vision loss and I'm thinking maybe 3rd x the charm..and asking for another opinion at Mayo..Currently, I am on no medication and will refuse steroids. Any thoughts out there??

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2 replies
Ellen | @helenfrances | Jul 17, 2020
In reply to @helena49 "Hi..I'm 71, I live in VA and was diagnosed with Pachymeningitis in August 2018, at Wake..." + (show)
@helena49

Hi..I'm 71, I live in VA and was diagnosed with Pachymeningitis in August 2018, at Wake Forest. Treatment with steroids almost killed me. The only symptoms I had was loss of hearing. It was so drastic an MRI was ordered for my brain. Thus the Pachy diagnosis....fast forward to 2020 I got a second opinion at Duke and was told it was not Pachy, but a brain infection. It went away and has now returned. Still, I have never had headaches, very little vision loss and I'm thinking maybe 3rd x the charm..and asking for another opinion at Mayo..Currently, I am on no medication and will refuse steroids. Any thoughts out there??

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Pachymeningitis is rare.
You are going to a good place (Mayo) where you might have a thorough lab evaluation,(repeat MRI?)and a diagnosis.
Let us know.

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Leonard | @jakedduck1 | Jul 17, 2020

I was curious if anyone has had a seizure or been diagnosed with Epilepsy as a result of this disorder?
Take care all,
Jake

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1 reply
jrt26 | @jrt26 | Jul 17, 2020
In reply to @helena49 "Hi..I'm 71, I live in VA and was diagnosed with Pachymeningitis in August 2018, at Wake..." + (show)
@helena49

Hi..I'm 71, I live in VA and was diagnosed with Pachymeningitis in August 2018, at Wake Forest. Treatment with steroids almost killed me. The only symptoms I had was loss of hearing. It was so drastic an MRI was ordered for my brain. Thus the Pachy diagnosis....fast forward to 2020 I got a second opinion at Duke and was told it was not Pachy, but a brain infection. It went away and has now returned. Still, I have never had headaches, very little vision loss and I'm thinking maybe 3rd x the charm..and asking for another opinion at Mayo..Currently, I am on no medication and will refuse steroids. Any thoughts out there??

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Hi @helena49
I live in San Francisco Bay Area and was also diagnosed with ideopathic Pachymeningitis In 2016. They first thought it was meningioma in the cavernous sinus area affecting the TN and a few other cranial nerves. Treated twice with gamma knife, however, after the second gamma knife in 2014 I did not feel well for over two years. Dizziness, shooting pains, headaches, blurry vision, hearing loss and facial numbness. The inflammation spread throughout my dura(right and left side) and a craniotomy was performed for a biopsy. Treated with steriods for 6 weeks and felt a little better but came right back plus i have type 2
Diabetes. Then treated with rituximab infusions x3 and so far that works but I need treatment every 12-18 months. Let me know if you have any questions.
Thanks,
Joyce

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jrt26 | @jrt26 | Jul 17, 2020
In reply to @jakedduck1 "I was curious if anyone has had a seizure or been diagnosed with Epilepsy as a..." + (show)
@jakedduck1

I was curious if anyone has had a seizure or been diagnosed with Epilepsy as a result of this disorder?
Take care all,
Jake

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I haven’t been diagnosed with seizures or epilepsy. The shooting pains from TRigeminal neuralgia seems like seizures but I don’t think they are since my doctors haven’t mentioned that.

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