Well it seems like it might be time again to consider finding another new Dr. I wanted to take a break and get off all of my medications, so I did. But the pain is so bad sometimes. Not worse than it was when I was on the medications, haha. But enough where I start to think, please can't there be something out there that might help. Please. And so I think about it. But then I also think about the fact that I have seen 22 Drs of various kinds over the last 3 years and not one of them has been able to help me. It starts to feel kind of hopeless. And I have the words of a neuropsychiatrist that I saw once (upon referral from my neurologist) ringing in my head as she asked me, in a not nice tone, "why do you think you've seen so many Doctors?!" Ummm . . . because no one has helped me!!!! But I think about that. Why so many. I don't want to appear to be drug seeking. And I'm not just Dr shopping, trying to find one who will tell me what I want to hear. I want help. And with chronic pain, I do think it's important to "shop" to find a Dr you can deal with long term, sometimes even a monthly basis. I think I deserve to find a Dr who listens respectively, wants to find things to help me, able to think outside the box, if necessary, and has a responsible and courteous office staff. Unfortunately, those things appear to be difficult to find all in one place. I know I don't know owe anyone, really, an explanation of why I've seen so many Drs (some of it is simply seeing different specialists and getting the run around via referral to see who might be able to help me). But I feel like going through it. So here you go. And I'm not including Drs I've seen for emergencies or illness. These are only ones that I was trying to get to help me.
1. My reg Dr because I thought it was an ear infection. He was actually the first to mention Trigeminal Neuralgia. But I didn't want to believe it.
2. My dentist because I thought I was having tooth pain. Nothing wrong with my teeth.
3. ENT - because surely there must be something wrong with my ear?!? Nope, he referred me to an ENT nerve specialist
4. ENT nerve specialist - he thought I was having TMJ issues. Put me on a TMJ regimen, which didn't help. Referred me to neurologist. Also thought maybe I should see a dentist. Right.
5. Another Primary Care dr for migraine
6. First Neurologist. The most condescending Dr I think I've ever spoken with. Also had a thick foreign accent I struggled with. I saw him for several months before deciding to try a different neuro medical assistant within the same practice.
7. Neuro Physician's Assistant - he was pretty good. But then I tried to get a medical waiver for jury duty (I was in bed all the time, I knew I couldn't sit for long hours or concentrate when in pain). They gave me a hard time about faxing the form (basically, they told me they would fax it, then after I had driven 30 min to their office to take care of it, they said oh sorry we have a policy that won't do that for patients. Uh huh.), which was kind of the last straw. Office staff was rude and often didn't call back for DAYS after calling for medical advice. Not very helpful when you're having a reaction to a medication or something. I just didn't want to deal with the staff anymore.
8. NeuroSurgeon #1 - Just to see if there were any surgical options for me. He said I didn't have TN and he couldn't help me. Basically shooed me out of his office.
9. New Neurologist #2 - tried a few new meds, nothing was helping. They had a very brusque medical assistant who would take all the calls, talk to the Dr, then call back, whenever I called for questions about meds, needing urgent pain care or anything. She was not nice, at all. I avoided calling the office to avoid talking to her. Finally, when I had the 22 day migraine and really needed something to break the pain, I called back and forth with her several times over several days. They basically told me to just keep taking the meds I was on and they'd see me at my regular appt in 2 months. No help. Whatsoever. I had been desperate enough to go to the urgent care, and the ER, and the Dr who was primarily treating me for the condition just tells me to keep taking the meds I was on ( that obviously weren't helping) and come back in 2 months???? I felt like I absolutely needed something to help sooner than that and if she wouldn't help me, I would go elsewhere.
10. Back before neuro #2, I went to the first pain management clinic. All they would offer me was a nerve block. But they didn't actually have a Dr there who could do the kind of block I needed, so they would need to have this other traveling Dr do it, because he had more experience with it. But it wasn't a very common procedure. Ugh.
11. So then there was the Pain management Dr who actually administered the nerve block into the center of my head. Which was a complete nightmare and didn't work anyway. They told me they didn't know what else to do. Ok thanks.
12. Seeing neuro #2 she referred me to pain management clinic #2 that she thought would be better. They only wanted to do another nerve block, which I was fairly certain I could never ever go through again. That was the end of that.
13. After the 22 day migraine and I'd fired neuro #2, I saw an integrative medicine Dr. Very nice Dr. Tried a bunch of stuff that didn't help. He wasn't covered by my insurance and was costing me $200 a visit. Uhhh, just couldn't keep that up without results.
14. NeuroSurgeon #2 - just to see if another Dr would offer me any surgical options, because I KNOW there are neurosurgeons who do things for people with my type of pain. Nope.
15. Neurologist #3.
16. Neurotologist - referred by neuro #3. He suggested I continue care with neuro.
17. Opthamologist - referred by neuro #3
18. Psychiatrist - referred by neuro #3
19. Neuropsychologist - referred by neuro #3
20. another general practitioner to treat an allergic reaction to a med prescribed by neuro #3
21. a different ENT - to look at throat pain that I wasn't sure was related to my other pain but she couldn't do anything. Just more nerve pain.
22. And somewhere in there I also saw a chiropractor who jerked my neck so hard it scared me and I started to cry. Didn't go back.
And then neuro #3 tested me for sleep apnea with an overnight sleep study which was very expensive. And the test results were very clear that I DO NOT have apnea. They have a scale: no apnea, mild, moderate, and severe. My results were in the NO APNEA range. But this Dr basically insisted that I still have apnea and should try a CPAP machine, even though my portion (after meeting our deductible) would still be over $400. Umm, excuse me?! And we tried botox which was a much much worse experience than I anticipated and didn't help. But he wanted me to continue, because it takes up to 4 treatments to know how well it will work for you, if at all. But, umm... all it did was cause me more pain for a month! I just couldn't do it. And my last visit with him, he basically said to come back again when I decided to get the CPAP, or do botox again. So that was when I fired neuro #3.
And that's when I decided to get off my meds and take a break from Drs for a little bit.
And that's how I've seen 22 drs in 3 years.
And now I'm scared to try again. So scared. Can you blame me?