18months Constant

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New Member

Date Joined Sep 2017
Total Posts : 1
   Posted 9/10/2017 9:01 PM (GMT -6)   
Hello All, I am new to forums, but at a loss for options. I had to leave work 18 months ago due to severe dizziness and vertigo to be diagnosed with BPPV, once treated for that symptoms were better but not gone so ENT referred me to Neurologist who a few months later diagnosed me with Pseudotumor Cerebri (which I tack Diamox and Lasix for). Symptoms still stayed the same with terrible increased migraines which went from maybe 1-2 a month to 15-20 a month migraine days a month. My most recent episode (which is still ongoing) has lasted now for 14 days! I have tried all kinds of migraine medications including Haldol, Botox, and Kepra. Nothing has helped!!! I have had MRI, CT, MRA, blood work for Lyme disease, checked for MS, autoimmune diseases. I've seen an Endocrinologist (just in case). Nothing! No one can figure out why I'm not responding to medications. Pain meds don't help really except sometimes I can sleep with them but wake up the same or worse. The Diamox and Lasix has caused me to have low potassium and hypothyroidism. Now I'm taking medications to treat problems caused by medications. I've finally decided to try a second opinion for Neurologist, I'm just not convinced that it's not MSor Lyme or some other Autoimmune disease. I'm 43 and lead a normal busy life prior to this. I now feel like what I imagine is an 80 year old! Any suggestions I can get on what to do next would be great!
Thanks, KrissyG1974

Forum Moderator

Date Joined Apr 2012
Total Posts : 7019
   Posted 9/11/2017 12:11 PM (GMT -6)   
Welcome to the forum.

Never give UP!

I am on my 8th neurologist since 2006. I had a great one, but he passed.
I now have one that is good and is try new meds that I have not had before. Currently the combo of Topomax at 250mg a day and baclofen at 15mg a day controls my Trigeminal Neuralgia and keeps the edge off the other migraine pain. Down to a 6-7 most days.

I am aiming for 3-4.

The meds we have tried in the past year I did not do well on to many bad side effects, but the fact that the doc keeps trying inspires me.

Try to find an experienced doc, well known at a Hospital system, versed in Neuro-migraine pain management. I found mine over the internet at a local Hospital system after 5 weeks of searching.

Moderator - Depression

"...when the gift of sight is cause enough for jubilation."
Billy Collins from the poem. HIGH

DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

Regular Member

Date Joined Aug 2017
Total Posts : 162
   Posted 9/17/2017 8:07 PM (GMT -6)   

I'm on the Lyme forum here. Not sure what made me look here. I've never visited the other forums before, but I did tonight and this is the only post I've looked at.

I noticed you said you were tested for Lyme but you're not convinced you don't have Lyme. Lyme testing is not very good, and false negatives are common. Many with Lyme, including me, had no known tick bite or bull's eye rash.

Lyme is most often accompanied by other infections, usually referred to as co-infections. Bartonella and babesia are some of the most common. Both of those are well known for causing headaches of various kinds.

I assume you had a Western blot test for Lyme. Take a look at your results and see if you had any positive bands at all. Take a look at the Lyme forum info on testing. Igenex lab is one of the best. DNA Connexions uses PCR testing. Learn more about Lyme and the coinfections and get additional tests.
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