18months Constant

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KrissyG
New Member


Date Joined Sep 2017
Total Posts : 2
   Posted 9/10/2017 8:01 PM (GMT -7)   
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

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7153
   Posted 9/11/2017 11:11 AM (GMT -7)   
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.

Peace
Trina
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;

WalkingbyFaith
Regular Member


Date Joined Aug 2017
Total Posts : 431
   Posted 9/17/2017 7:07 PM (GMT -7)   
Krissy,

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.

KrissyG
New Member


Date Joined Sep 2017
Total Posts : 2
   Posted 10/13/2017 9:48 AM (GMT -7)   
Trina and WalkingbyFaith: Thank you both for your responses. I will see a new Neurologist next week for a second opinion. I did ask to see a Neurologist that specialized in Migraines and was told "All of our Neurologists treat Migraine." This frustrates me because I worked int he medical field and know that all Neurologists or most have their areas of special interest and the scheduling department refused to even try to find the right fit! I will discuss this with the new doctor as I was seeing a Neurologist that treats migraines before however my situation is complex and not responding to treatment.

I cannot say for sure what kind of test was performed for Lyme disease, I will be asking to be tested again for this as well. I am very frustrated and just tired of being sick and tired. New symptoms appear and no explanations to go with them. Now my FSH is being checked again to see if I am now menopausal. Flushing with hot flashes and hair loss along with increased fatigue. and increased blood pressure (which I am now taking meds for that too sad Seems like I take more medication that my 60 year old mother who has had and octuple bypass and COPD with high blood pressure! Current DX list: Pseudotumor Cerebri, Intractible Migraines, Hypertension, Hyperlipidemia, Hypothyroid, Vit D Deficiency, Potassium Deficiency, GERD, Facial numbness and tingling and peripheral Neuropathy, left eye droop (post Bell's Palsy recovery 2 years ago), recurrent BPPV, Vision changes every two or three months. This list goes on and on. Any insight would be great.

Kristen (Krissy)

WalkingbyFaith
Regular Member


Date Joined Aug 2017
Total Posts : 431
   Posted 10/18/2017 1:21 PM (GMT -7)   
Krissy,

I just looked for this post again. This is the 2nd time now that I've ventured off the Lyme forum just for you. Bell's Palsy is definitely a sign of Lyme but too few doctors know that. Facial numbness, tingling, neuropathy and much more are very common with Lyme and Bartonella.

Here's one article I found on it. There are more.
/www.ncbi.nlm.nih.gov/pmc/articles/PMC2751922/

By all means get checked out by the neuro, but if you want to get to the real roots of your symptoms, I think seeing a Lyme literate MD or an alternative doctor who is knowledgeable of Lyme and all that goes with it is your best bet. Doctors generally treat with antibiotics, but they may or may not be effective, especially if you've had it for a while. Many people are successfully treating the various infections with herbal medicine and supplements either with or without a doctor's guidance. Many have no choice because of finances or the lack of a suitable doctor in their area.

Please feel free to visit the Lyme forum for more information and ask as many questions as you need to.

Blessings!

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7153
   Posted 10/24/2017 11:30 AM (GMT -7)   
Walking by Faith thanks for adding the link.

I have to add that psychical trauma to head, causing nerve damage and multi-diagnosis migraines can also cause face droop.

My left droops, not drastic, most noticeable when I smile. Sometimes, my husband can not tell I am smiling.
Clearly seen in photos.

Krissy I am NOT saying that LD is not the culprit, am just putting a little bit more info out there for you.

Peace and strength
Trina
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;

Aliveagain
New Member


Date Joined Oct 2017
Total Posts : 1
   Posted 10/26/2017 3:04 AM (GMT -7)   
First you have to back up. Way up to the onset of your symptoms and start writing it all down. It will be much easier for all the doctors you are going to see. I think you have a secondary problem. This is not the kind of primary issue that a headache neuro is going to cure. So start looking at everything that happened preceding the onset of these symptoms. Dental work, swimming in a lake, fell of a bike etc. Anything you started doing that was new. Gardening in the farm run off. It's relevant. We do not have diagnostic tools but we have logic and the internet. Do not use your imagination. Use structure and dates, include any medical/dental procedures go back three years. Look very closely for a pattern. This is not easy.
Yes, a headache neurologist rules out nasty things in your brain and then precedes to prescribe drug after drug until one works. I can tell you that if's not a migraine they won't work well. Any of them. And in fact can mask a symptom that truly is causing the problem which is not in the brain but activated your nerves and causing a severe 24/7 problem. A different neuro. might help. Ask your GP if he knows any that specialize because there are lots of specialties.

I would see an the Endocrinologist (check calcium more than once), and infectious disease specialist and the DENTIST.

Try to go with the simplest explanation first even though you will be discounted. If all roads lead there then find someone who can prove it.
.
I'm writing because this happened to me. Four months to the day yesterday. Intractable 24/7 severe left sided headache, face pain, neck, and shoulder pain. So dizzy I fell into our creek. I could not function. I thought my life was over. I was trying to find a way to end my suffering as I did not want to share it with my husband. 5 trips to the dentist, 1 to the Endodontist. They said oh no nothing would a headache this severe. I went to My GP, 2 ENT's, 2 neuros, 5 mris, 1 cat, 1 lumbar puncture. So many many migraine meds. that masked the true symptoms. It was the excel spreadsheet where I saw the pattern. Then I started doing research and became convinced that I had a botch root canal. The dentist and the endo. could not find a problem so I convinced myself that it was indeed a migraine (against my better judgement). 4 months of unending pain, doctors, tests finally went full circle I just backed way up and thought, I'm 56, I didn't just get and intractable headache. I went to a prominent oral surgeon who simply shot me with Lidocaine and man it was like the hand of god released me from my pain. No kidding, I felt it sliding off me.

So start asking questions and decide whether they are even possible. Gas leak, bacterial ear infection, hyperparathyroidism etc. but you may see something on that spreadsheet that you did not expect. That's what I did for 4 months. Literally ruled out everything even TMJ. DO NOT GIVE UP.
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