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Neurologist in Nashville, TN area (Read 432 times)
Dave TN
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Neurologist in Nashville, TN area
Jan 20th, 2023 at 6:07am
 
Does anyone have a recommendation for a neurologist in the Nashville/Middle Tennessee area?

I'm a 25 year CH sufferer and have seen 2 different neurologists in the past 15 years here in Tennessee. The first I saw for approximately 4 years and the last year this guy seemed to just "phone it in" whenever I saw him. The final year I never got to actually see him because the day of my appointments I would get a call first thing in the morning with "he's not coming in today" or "he has family problems" etc. This went on for an entire year. It didn't really matter to me, as long as he was refilling my prescriptions.

Finally I changed to a different neurologist, who I've been seeing for the past 9 years. This one didn't know much about CH and like the first was willing to give me the medications I needed to abort the CH. It seemed like every thing we tried, both preventive and abortive, I had to research and bring it to him.
Like I said, he was willing to prescribe the medications I needed, that actually helped, but he was just, "My drug dealer".
Now, out of the blue I got a call from his nurse last night saying "He feels he should refer you to someone else for you CH"
He prescribed me 5mg Prednisone about a month ago, and it's working really well. The only thing I can think of is, I asked the nurse about a week ago if I could send him the info on Vitamin D3 and have him look at it so we could discuss it at my next appointment. I faxed the info to him the day before I got the phone call.
So it seems to me, now that I've asked him to do his job and research something for me, that that was too much to ask, and now he wants to pawn me off on someone else?
I don't know, maybe its me? It just seems funny that now when things were going well he decides I need to be referred out? She said he was going to refer me to Vanderbilt.
I've actually been to the Headache Clinic at Vanderbilt right before seeing my current neurologist. The 3 times I went - I was in between cycles - so the doctor didn't prescribe anything new. We just talked about how I was doing.
The last time I went, I was checked in, vitals taken, and put into an exam room to wait for the doctor. After an hour, I went in the hall to see what was going on and THEY HAD CLOSED AND GONE HOME FOR THE DAY! I'm not making this up - All the lights were off and NO ONE was there except me!!!! I was so mad I left - luckily the door opened out and I could leave. The next day I was expecting a phone call - nothing!
That's when I found my current doctor.

Sorry for the long rant but I'm at a loss for words with this whole doctor thing right now!
So, basically I'm wondering if anyone could recommend a Neurologist in the Middle Tennessee area?

Thanks for listening to my rant!
Dave
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Traveller
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Re: Neurologist in Nashville, TN area
Reply #1 - Jan 20th, 2023 at 6:07pm
 
Dave - When I moved to Tampa I just started calling Neuro offices that were compatible with my insurance.  There were about 10 in the area as I recall.  I asked each one how many active CH patients they were treating, and went with the one that called me back later saying 5 under treatment.  Turned out to be the right choice.  First visit my new neuro ordered a sleep test, diagnosed me with severe sleep apnea, treated with a CPAP machine, and I have not had a CH since 2007. 

If no one here has a good recommendation I would call around and see who is treating actual CH patients.  Best of luck.
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Graemel
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Re: Neurologist in Nashville, TN area
Reply #2 - Jan 23rd, 2023 at 12:10am
 
Hi Dave,
As a CH sufferer for many years I hear you. My quacks were the same. I even saw a highly regarded neurologist who specialised in headaches and even she was unable to meaningfully help. You do not say what medications you are on. Verapamil as a preventive and sumatriptan as an abortive are common. My wife helped me do research and in the end she saved me. I went on a high dose of verapamil and then tapered down. I have been relatively CH free for over 2 years now. I still get shadows but I live with them. The secret is to take minimum medication while still keeping CH at bay. If I increase verapamil up from 120mg per day then I start to lose quality of life. Tiredness etc. All the best and read my other posts here to get a better idea.
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Dave TN
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Re: Neurologist in Nashville, TN area
Reply #3 - Jan 23rd, 2023 at 6:02am
 
Graemel - I've tried verapamil, years ago with no relief, and am currently on 5mg prednisone that is working pretty good, it has cut down the CH tremendously to almost zero a day! I know its not something I want to stay on long term but it's a godsend in the short term! Sumitriptan injections has always been my go to abortive that usually works 95% of the time. O2 stopped working for me about 4 years ago.
It seems like everything I tried for preventative would either work initially and then stop all of a sudden, or I was at the end of my cycle when I tried them? That was at the beginning of this CH journey and I'm not sure which one it was? I may have to just start over with the preventative meds?
So I guess I'll sit down today and as they used to say "Let my fingers do the walking" - Appreciate the input!

Traveller - That's a great idea to ask how many CH patients a Nero is treating - I've never thought of that before!
That's been part of my problems in the past, out of the 3 neuro's I've seen, none had ever actually treated a CH patient before - Actually this website is the only place I've ever been able to interact with other clusterheads!
Thank you for the information!
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Graemel
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Re: Neurologist in Nashville, TN area
Reply #4 - Jan 24th, 2023 at 5:08am
 
Dave I increased my verapamil until CH ceased. I had to go up to 1200mg per day but then the miracle happened and I slept through a night. After a week on the high dose I tapered it down over a few weeks and now am on 120mg per day. Also take 1 x 800mg ibuprofen per day. It worked for me but you need an ECG at least before starting this. Side effects were bad but it has given me my life back.
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Dave TN
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Re: Neurologist in Nashville, TN area
Reply #5 - Jan 24th, 2023 at 5:46am
 
Graemel - That's great that the verapamil increase worked for you! I know all about side effects - I was on high dose prednisone last year and I think I had every side effect there was! There came a time when I questioned whether the relief from CH was worth it, until I started weening off and they returned with a vengence!

After spending several hours online and on the phone yesterday, I finally found a neurologist who takes my insurance, is taking new patients, and knows about CH - now I just have to wait on my PCM to do their job and submit the referral to my insurance, and get an appointment!! Luckily I've been stockpiling meds for just this kind of situation! Fingers crossed.


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Graemel
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Re: Neurologist in Nashville, TN area
Reply #6 - Jan 24th, 2023 at 2:03pm
 
All the best Dave and don't under estimate the 800mg ibuprofen in tandem with verapamil. Also good for prostate as an extra bonus. Grin Grin
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Peter510
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Re: Neurologist in Nashville, TN area
Reply #7 - Jan 25th, 2023 at 2:23pm
 
Graemel,

And here was I thinking Ibuprofen was supposed to be taken orally Undecided

Peter.
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Dave TN
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Re: Neurologist in Nashville, TN area
Reply #8 - Jan 26th, 2023 at 4:49pm
 
Graemel - As a former user of "Infantryman's Candy", I wish I could take ibuprofen still. The meds I'm on for back pain and arthritis prohibit me taking it anymore.

Peter - I guess I was taking it incorrectly myself?  Grin
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Graemel
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Re: Neurologist in Nashville, TN area
Reply #9 - Feb 6th, 2023 at 6:15am
 
Peter510. That is funny. Grin Grin
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