Hey y’all, I am experienced the typical symptoms of trigeminal neuralgia, and have seen a specialist on the topic who are sending me for an MRI, but since I saw them last week, I am developing worse pain, and they prescribed me 10mg of baclofen, which probably helps slightly, but I still get pretty bad pain bursts that I am trying to control.
My question to y’all is:
Has anyone felt pain or tingling in the forehead?
Are y’all triggered by touching your forehead and nose?
Discomfort and tingling at the top/back of the head?
Is it just starting to worry me, I plan to tell the specialist, but I might not see them in weeks… I called to try and rush an appointment.
Hi fighingsimba,
I have had tingling and pain in the forehead along with just about every other part of the left side of my head including teeth and tongue and gums. The pain comes and goes at other parts at diffe rent times. The trigger points also change. Right know wearing hats or glasses are triggers which is frustrating.
10 mg of baclofen is a very low dose and you might want to talk to your doctor to get your meds increased or adjusted. Unfortunately it seems to always take a long time to see a specialist which is made worse when in pain. I hope you can find some answers to help you soon.
Scott
Thank you for your response. Yeah having to blow my nose is so painful, and frustrating, and I wear glasses, so it’s hard to be triggered by it.
I reached out to them about being in more pain than I was before and possibly increasing medication because it’s hard to do my job, not to mention the side effects are scary and I worry about getting into a car accident or slurring while at work.
I am glad you reached out to possibly get an increase in meds. It can take a while to get used to new meds or an increase in current meds being taken. Ask your doctor what to expect and do all the research you can about treatments and meds, you are your best advocate. Good luck.
In 2013 I first noticed these funny little electrical shocks when I would lightly run my fingers across my forehead. They got worse and of course I found that it was TN. I did a lot of research and decided to have the decompression surgery and it seemed to work. I am not cured and still have problems like not being able to shave on certain days but I am much better. I would advise you to see a neurologist as soon as you can.Good luck.
Simba hang in their. Your going to have good and bad days no one is better or worse than the last. We are here for you any day at any time. I have it on both sides of my face ranging from numbness to the extreme where I can’t even talk, move, or stop screaming. A increase in meds is something to consider. But at the same time you need to find a medium to release some of your thoughts and feelings. Family and friends can only be so supportive. Try finding a chronic pain support group in your area, I have found it helpful to talk to people face to face, pun intended. Try something you haven’t done in a long time. Catch up on that book series, rewatch that movie or show that gave you that “Saturday mourning comfy feeling”, models, art,
Trolling people on the internet, get back on your nimbus 2001 and rock it. You can not let this icor sink into your mind and soul to devour the you.
Thanks Nicholas, I needed that haha
I’ve been having better days and I’m in the process of reading Striking Back. It’s been hard because of the stress of work and school, but I’m trying to be patient. My medical paperwork keeps getting mistracked by these doctors offices and miscommunication keeps happening so those are my delays. I will look for a support group. Thanks
Spent all day in the ER as per my doctors office “advice” yesterday… 7 hours sitting in a bed for them to give general tn pain relief advice. Really. Trying to find a job is hard enough with this condition.
Oh no, that’s awful Nicholas. I’m sorry that happened. That’s a fear I have. Do you know if that is typically what happens in the ER with TN patients?? I’m assuming and hoping not.
Right now, I’ve told my boss that I’m leaving and I just finished school, so I’m Hoping all transitions go well with my insurance and pain management.
No it is not a usual thing. They just never had a TN patient before. I’ve been their a couple of times in the past. They tell to have my doctor to refer me to pain management. I don’t go to pain management because one I can’t afford any pain meds they suggest and they tell me to get me prop D card but I can’t afford that treatment either
If you don’t have insurance and are paying the full retail cost of medication at a pharmacy, you should be aware that prices vary significantly between stores – sometimes a difference of more than 90%. Costco generally has the best prices and you don’t need to be a club member to fill prescriptions on their website or at one of their warehouses. If you have a prescription for something it wouldn’t hurt to call a few different pharmacies to ask what their best cash price is. Some generics might be as little as $5 per prescription, even without insurance.
My insurance covers my prescriptions. But my local pharmacy has a policy that they can’t just give me the meds without a charge. At the end of the year they give me the money back. I live in California I can’t afford my rent my landlord has been giving me for a while he understands my situation. But the rent is 2k a month. My wife left me because I don’t have a job and the only money Is from durability insurance and she thinks my TN is a excuse for me not want to talk, smile or be in a good mood. I have been trying to find work but no one is hiring 33 year old with almost no work history or a chronic pain condition. I have no prospects and no support from family
I have some good news/an update?
I have had less pain in the past week. Still unable to get the MRI appointment because of miscommunications, but I have been better able to function with my medications (slightly). I am now taking amitryptaline though (I told my doctor I had been feeling very depressed in the past two months, and I am scheduled to see a psychiatrist/therapist soon. I still have unpleasant side effects, but this week is much easier at work, so I’m trying to enjoy the calm before the next storm.
