In Need of Advice/Support!

Hi everyone - I wasn’t really sure where to put this but I’m looking for a little support/help. Here’s the backstory first:

I’m 24 and was diagnosed with type 2 TN after an MRI by an ENT back in February, my doctor started me on one 50 mg tablet of topomax at night and I’m now taking one 50 mg in the morning and two 50’s at night. I noticed lots of changes with my body within a few weeks to a month after I first got the MRI however - various symptoms that come & go, some that stay, some that frequently come back.

I brought it up to my general practitioner the other day and she’s actually switching me to tegretal to see if the symptoms are from that are or something else. Some of them do overlap, but some do not I think. These are just a few of my symptoms, but mainly the ones that I think do not overlap with the topomax:

• Arms and/or legs - has come & gone since at least late March
○ they feel heavy often, and the best way to describe it is it feels like someone is squeezing my arm in a tight band when I have this symptom.
○ When that occurs, it feels like a deep ache that reaches my bones and if anyone were to so much as touch my arm at that point it hurts. I most often feel the squeezing on my arms, but can feel it on my legs as well. (I was feeling this one often, but this symptom also comes and goes)
○ This most often comes back when I do a lot the day before and overexert myself and/or do not get enough sleep

• Heat intolerance -
○ I used to enjoy the heat and the summer, granted it wasn’t too muggy or humid.
○ I’ve noticed starting in April anytime the temperature gets over a certain degree (that’s not usually that hot, like 75) I cannot function at all.
○ Same with indoors, hot showers, etc.

• Fatigue - this lasted about 2 weeks the first two weeks of April. That was not a normal, everyday fatigue. I had never before experienced fatigue like that before. It came on suddenly
○ I haven’t been as fatigued as I was that week, but still if I do too much during the day and don’t get a good nights sleep the next day my body feels like it’s been run over by a truck almost - I don’t know how else to describe it but that’s how little energy I have the next day.

• Have noticed Lhermitte’s sign (as its called I believe) a few times when I’ve bent my neck forward - a shock like sensation that travels down my neck and spine mat first I didn’t realize what this even was. Definitely the first few times it happened I just brushed it off.
○ This just started like a few weeks ago if that
○ Not sure if this could be related to the topomax or not.

What I’m looking for support/help for now is how do you guys deal with work/school/life balance? I’m currently working as an intern right now at a county sports office that I originally landed back in February (just started the job about 3 weeks ago now), but I’m struggling with the hours that my boss wants me to work because it’s more than I thought it was going to be. It wasn’t something that I applied for, I got it through connections and I knew they wanted me for more hours than my school requires (they require 120 hours over 15 weeks) and when I received the purchase order it said 25-30 hours. His assistant told me when I started my first week there it would be 25 hours because my boss was away on vacation (I actually got the internship through a connection with someone that is higher than him in the office), but when he came back the next week he told me I would be working up to 37 hours per week.

I’ve been kind of anxiously obsessing over that ever since because I’m not sure how I can handle working that many hours with how my body feels right now. My Trigeminal neuralgia has gotten way worse since February, and has spread to the other side and I’ve worked myself up in multiple panic attacks thinking about how my body is going to feel after working that many hours. I also still have classes to take for school this summer, along with another job and coaching every once in awhile (which is more of a stress reliever for me) - and finishing my classes so that I can graduate in January is more important and I think that is what is making me more stressed and anxious at this point. Because I know my limits and what I can take, especially with how I feel right now.

He’s not an easy guy to talk to, I personally think he’s a little chauvinistic and whenever I’ve tried to talk to him before it hasn’t worked. I’ve worked around men in the sports world (I’m a sports management major), and have coached at the same school for 5 years now so I think I’ve figured out that I need to send it in email form. I’ve been working 9am to close at 4pm, but when camps start that’s when I’ll be working a lot of hours per week as they run from 8am to 5:30pm.

If anyone can give me any advice on how to phrase to this in a respectful way, as I’ve never been in this situation before that would be great! I’m not looking to drastically cut hours, but I can’t work until 5:30 as my other job starts at 5:00 and I wasn’t even away of the camps until after I started the internship.

And any advice on how to balance school/work/life as I’m really struggling right now!

Thank you & I apologize for the length!

I can’t really offer any advice for your work situation, and I know you his is not what you asked for, but you may get want to consult with a neurologist or neurosurgeon who is familiar with TN, or other facial pain disorders. The other symptoms you are experiencing do not sound like TN, so you may have something else going on. Some people have TN as a complication or result of another issue. My TN is a result of a Chiari Malformation which causes many different kinds of neurological symptoms.
Sorry if I’m sticking my nose where it doesn’t belong, but I did feel that I needed to bring the possibility of further testing to your attention.

Thanks for your reply Christine, I really appreciate it! I brought it up at my last last ENT appointment (& my doctor switched me to the nurse practitioner for some reason on my last appointment) about 4 weeks ago, and as everything has seemed to have gotten worse since then I decided to bring it up to my GP last Thursday when I had an appointment for a different reason.

My family doctor actually told me she didn’t want me to see that nurse practitioner anymore, and gave me two numbers to call for a neurologist appointment but the one isn’t until September and the other until next January. I think that’s why I’ve been been feeling so overwhelmed lately because I don’t know what else to do now - I’ve mentioned to both doctors, and have a long wait now to see a neurologist.

I can understand how you feel! I initially had to wait four months to see the neurologist that I was referred to. By that time, I had pretty much diagnosed myself with TN, but he disagreed, and gave me Topomax. That is not the right medication for TN! Under his care, I was taking up to 400 mg of Topimax a day, which is a pretty high dose. It made me feel like a zombie, and lose weight. As I didn’t need a referral,I started looking for a new neurologist on my own two months later because I was getting desperate. The new doctor agreed that I had TN, and started me on Tegretol, which is diagnostic for TN, and really worked well on the pain. I hope you find some relief with the Tegretol.
Do you have to have a referral to go to a specialist? If not, you might look at the Doctors list on this site to find someone for a consultation. Where do you live?
Please feel free to ask me any questions you may have!