First change to medication

With the onset of colder, windy autumn weather, or possibly just by coincidence, I have been experiencing a greater degree of pain lately with more of the stabbing type 1 symptoms than the type 2 more constant general headache that I had been having over the spring and summer. Finding it less easy to cope with the pain that had been manageable on the low dose of Amytriptyline I was on, I have finally managed to speak to a doctor at my GP’s surgery, and on the phone he suggested I double up my dose & see how that goes for a while. I am happy to try this as I am finding the drug is working for me with no side effects after the initial couple of months of wooziness and severe aggression/mood changes I expect from a tricyclic drug have worn off. Just hope they will not come back as the dose increases - was ok the first morning after taking 20mg, but feeling very fuzzy today.

I really hope I can see another neurologist soon, since the whole onset of TN I have been seen by an optician, then the Orthoptic dept of Lincoln Hospital, and an Endocrinologist (under the assumption that my Graves disease was recurring), and they all have said that it is Trigeminal Neuralgia. I was referred to Neurology by the Orthoptic dept, but under the current booking system you have to go away & make the booking yourself online, and there were no appts available in any of the 4 nearest hospitals to where I live (Lincoln), and I was forced to book an appt at the Neurology dept of Kingsmill Hospital for about 5 weeks later which was August. When I got there (on a Saturday), it was deserted and I was the only patient. I was seen promptly but the neurologist (I don’t remember his name), barely listened to me, heard the word Graves, took a look and said my eyes were protruding and that’s what I had, and before I knew it I was outside his office again. I was actually reaching to take my notes with symptoms & dates etc out of my bag when he wrapped up the consultation. He ordered an MRI but for “head and orbits” so I don’t know whether the trigeminal nerves were looked at at all. I was so upset later that I went to my GP & said I don’t want to go back there, and he got the results sent to him which were “normal”. I don’t know if that was his diagnosis or the neurology dept at Kingsmill, though. The GP said he would re-refer me to see a neurologist at Lincoln Hospital, but as there is no neurology dept there and a neurologist only visits once a month or thereabouts there was a very long waiting list. I have yet to hear about an appointment.

Hi Nikki,
Well I hope the increase in meds makes a difference for you. You might feel slight side effects as you increase, but those should disappear once your body adjusts to the new dose. I usually give myself 3-4 days after each increase, I generally know I’ll feel a bit off , sometimes I’m surprised and don’t feel any extra side effects with an increase.

Your description of your neuro visit I could relate too, I think many of us have encountered " that" doctor/specialist, it can be so frustrating!!
I now say something very strongly, ( out of character for me, but it needs to be done)
When I encounter a doctor who doesn’t listen and rushes through without listening.
Either way, they’re not the doctor for you or me.
It’s awful that the wait is so long, but hopefully you’ll find a caring doctor who is willing to help you and work with you.
MRI s, you want to come back normal, it’s actually routine procedure to eliminate other causes for our pain, such as tumors or ms. I find most neuro’s only order the basic MRI, and not the enhanced thin sliced ones, unless you are exploring having an MVD surgery. With a specialized MRI they are more able to see a compression on the nerves.
I’ve had to since 2002 and still haven’t had one done. Only one neurosurgeon
Has mentioned possibly having this done.

Anyways, I hope you start to feel some relief if your pain soon, take good care of you,
Mimi