Hi everyone, I’m seeing a neurologist on Monday, that I haven’t seen before, I’ve been waiting months to see him…
Now I’m just thinking “what am I going to ask him?” Of course I’m going to tell him what my pain is like, my medication, (which I loath to change) as my meds work sometimes for days or weeks, then all of a sudden without any reason the “zaps” will come, I won’t be able to eat, drink, do my teeth even talk because of the pain, it will be all consuming the pain will take over my life and I want to die, then, for no reason whatsoever the intense pain will disappear. And so we go on, I want him to give me something that will help during those times, is there such a thing?
Does anyone out there take any meds that help them when they are in severe pain, if so what’s it called?
Hope you can help?
Hope he can help???
Thanks in advance,
I haven’t been on line for a long time, but hope your all coping.
Much love Anne
Hi Anne,
I don't experience TN in the same way you do but I still wanted to offer a few words of encouragement and maybe a little advice. I'm hoping that you checked the new neurologist and know that he deals with TN patients. You have described your symptoms very well here. I recommend that you write it all down and make sure that you have notes with you so that you don't forget anything.
What you describe is classic though. In my early days with TN, I would have attacks that would come on strong (differently than yours) but they would last a week to six weeks and then they would just be gone. They would come and go without any reason.
Make sure you let them know what has not worked for you and just importantly, the dosage you were taking. Also, if you were allergic to anything or could not tolerate it, make sure to mention it.
You mentioned that you have problems with your teeth. Some of us experience what feels like severe tooth pain in a full section on our mouth that makes it difficult to eat. If that's what your mean, perhaps a lidocaine rinse would be helpful. It tastes terrible but it will numb the area for a period of time.
What a journey we are all on! Just make sure the doctor HEARS you. I think that is the most important thing any of us can do!
Good luck, I hope it goes well for you and that you have found a doctor worth the wait.
Cathy In MD
Hi Anne,
I hope that I can offer some advice based on my experience. I first must say that I had a successful MVD surgery 21 months ago and am now fortunately 100% pain free. Before surgery, however, I had what sounds similar to your experience.
My pain was controlled well by meds and then at about week 3 or 4, the pain would start to break through and quickly get worse as the days went by. I would have a couple of good days followed by a bad day. I had a plan with my neurologist though that when the bad days outnumbered the good ones or when really when I was ready to get that control back, I would call him and then my dose would be upped. With each dose increase, however, came worse side effects so it was always a balance of sorts. Still, I was upping my dose about once a month or so. I started on Trileptal when my TN symptoms first started and when I maxed out the amount of that I could take, I switched to Tegretol XR. This was all in a period of 9 months and at that time I had my MVD surgery. For those breakthrough days, when it was just a "bad" day overall, I would take Vicoden in the evening prescribed by my doctor. It did not control the pain that well but what it did do is take the edge off for a few hours and helped me cope with the bad days. It just made me not care as much, if that makes sense. Longterm, I'm not sure if that is the best solution, but for me, taking Vicoden as needed really helped me weather those days.
I hope this advice helps a little. Also, I would strongly recommend you at least look into having MVD surgery if you have not already, especially if you have Type 1 symptoms as I did. I got my life back with that surgery. I know there are no guarantees that I will remain pain free for a lifetime but I feel grateful and blessed for the time I've had and hopeful for a lifetime relieved from this awful pain. Please keep us posted on your neurologist visit.
Hello Anne, I am Donnie..I am new to this site but not new to the pain of Type 2
Trigeminal Neuralgia.In my late twenties til now (I am 55) My pain just
could not be managed. My Drs just kept upping dosages of narcotics. I lost my life.
Now I have a new Dr. Took me off of all the opiates and is now managing my pain
with lyrica..it zeros in on the nerve pain.Only been on it for 4 days or so.
.So I don't know if it will help or not.But I tell you please if you need
a med with opiates in it just be careful. It robbed me of many years.I will be seeing a Neurologist also.
If he recommends surgery..MVD I'll go for it I have heard many people it has helped. Donnie
Hi Anne,
Your description of pain sounds like classic TN1, and my journey with medication quite similar to yours. I was on tegretol, it worked for a few weeks, then the pain started to return, meds went up, worked for few more weeks and so on. After I got to 1200mg per day and still not giving me relief, affecting my liver and unable to function on such a high dose my neurologist suggested it was time for surgery. First surgeon I saw wanted to do purcutaneos balloon compression. I didn’t like his manner, his fees or his dismissing the idea of MVD. Next neurosurgeon was totally different, and he did an MVD.
Things to check with the surgeon before doing MVD:
Is it possible your TN started after dental work - may not be a good candidate for MVD
When he looks at the MRI is he only going to do MVD if there are visible blood vessels impacting the nerve? Most DONT show on the MRI, but will be found during surgery.
Has the surgeon done a few, or hundreds or thousands of MVDs? You want one with heaps of experience, it really makes a difference.
Good luck
I agree with Duckie on the neurosurgeon qualities you want. I saw three neurosurgeons (and before that two neurologists) and all opinions were different. I chose the neurosurgeon who had done thousands of these surgeries for decades and trained with Dr. Peter Janetta who conceived this surgery. I put myself in the best hands and then took that leap of faith and am so glad that I did. My surgeon, Dr. Ken Casey, was the only neurosurgeon that clearly saw my compression, but like Duckie said, most are not even visible on MRI. If you do indeed have classic TN1, I would seriously consider MVD surgery as that will give you the best chance of getting out of pain for the longest amount of time, maybe even for good. My drug experience sounds pretty identical to Duckie's although I did the zero to top doses on both Trileptal and then Tegretol. I couldn't tolerate the severe side effects and the constant breaking through ever few weeks. Best wishes to you.
Anne, based on 20 years of reading medical literature and thousands of conversations with patients, I think you are getting good advice from others who have already commented. If you'd like a list of questions that may be pertinent, look for our article under the Face Pain Info tab on developing a constructive relationship with your doctor. See http://www.livingwithtn.org/page/info-3
From that article, the following questions may be pertinent. Your doctor may not have time to explore all of them, so you decide which are the most important.
- Who trained you and how long ago? Have you had (or have you taught) recent training in a hospital setting? Continuing education? May I read your Curriculum Vitae? In what local hospitals are you accredited?
- How many facial pain patients do you see in an average month? Of these, how many are Trigeminal Neuralgia patients?
- For someone with my reported medical issues, what steps will you take to confirm a diagnosis and evaluate me as an individual? How can I help you?
- Do you encourage patients to keep and share with you a pain journal? Will you use patterns of pain reported in journals as an input to my pain management plan?
- If I am later having a pain crisis or severe breakthrough pain, will you be available for telephone consultation? Will I be able to talk to a triage nurse if you are engaged with other patients?
- [for neurosurgery] Which surgery (or surgeries) do you do most often for this kind of pain -- and how often do you do such procedures (a few times per year is not enough)?
- [for neurosurgery] Based on what you know about me, am I a good candidate for the treatments you most often provide? Explain why or why not. Do you have literature I can read?
- [for neurosurgery] Describe the procedure briefly. What equipment will you use? Who will assist you? How much will this surgery cost before and after insurance?
- [for neurosurgery] What is the likelihood this surgery will relieve my pain completely? Partially? For how long? How do you know? Can you refer me to on-line literature that confirms these statistics?
- [for neurosurgery] What are the possible side effects of surgery, and for someone like me how often do they occur?
- How will you follow the outcomes of my particular case over the next five years?
- I intend to be an active and participating member of my own medical treatment team. Are you comfortable with my participation? Are you willing to take time to explain to me your recommendations or to hear my concerns?
Go in Peace and Power
Red Lawhern, Ph.D.
Resident Research Analyst, Living With TN
I agree with mybell above
I am coming up on four years with no shocks, no meds!
You are already on the right track in seeing a neurologist. Family or primary care physicians are unlikely to have a clue about face pain or headaches and should immediately refer you to a neurologist. All you have to do is describe your pain to the neurologist and he or she should conduct a neurological exam (check your reflexes, face expressions, check your facial sensory nerves with a cotton swab then a sharp object, etc.) while listening to your pain description. The pain description is often the hard part because a pain level number really has no meaning unless you tell him or her the context such as "my pain level =8 requires me to go to bed because I cannot think even to just watch TV" or "I had to give up driving because I cannot concentrate at pain level = 7". If you have any treatment history such as Gamma Knife or even chiropractic or acupuncture then be sure to tell the doctor so that he will know you have serious pain. Here is a simple trick if you are in serious pain and cannot describe the pain due to the pain consuming nearly all of your short term memory at the time - take a selfie of your face and one of the side of your head that hurts then paste it into a Word document and use the insert function to insert circles or ovals on the picture on your major pain locations then click on the circles or ovals and select fill colors of black, blue or red. I use black or dark blue for a hard constant ache and red for burning pain. You can also select all kinds of symbols or clip art like lightning bolts and size them to any size. There is a huge library of clip art available if you simply select "insert" on the top menu bar. If not familiar with Word then just use colored pens on your picture.
If you don't have his attention by now then ask him if you should sign up for the following clinical trial at clinicaltrials.gov:
NCT02168764 Sphenopalatine Ganglion Stimulation for the Treatment of Chronic Cluster Headache. Just type NCT02168764 into your search engine (Google or Bing or Firefox or ...) and you will quickly see that successful clinical trials at Mayo Clinic and many other clinics as well as all over Europe have been successful for neurostimulator treatments. This current set of follow-on trials has been funded at locations all over the US in many states.
Good luck. I hope your neurologist has significant recommendations for either testing or treatment. If not, immediately go to another doctor because many doctors still don't have a clue about headache or face pain. The ones who do will immediately reply to your complaint or description of your symptoms to recommend a diagnostic then a treatment protocol. This kind of pain is no longer a "rare" unknown disorder because all the work of TNA, livingwithtn and our onslaught to pain centers has produced treatment protocols like neurostimulation. If your neurologist falls back on the always easy idea of trying many meds trials as the first step then be sure to have your list of meds that have not worked or you will have to go through the meds trials again.
This is a great suggestion! It took me 30 years to get a diagnosis and I went to four neurologists. Even my current neuro doesn't understand that there are differences in TN, such as TN1 and TN2. I am hoping to get into Hopkins, very long waiting periods but probably worth the wait. I am sure that my problem was caused by dental surgery when my wisdom teeth were extracted. I had one that was partially impacted, it had become infected and I had cysts under the tooth. The facial numbness started right after that, which the dentist did keep an eye on for awhile. I had also been in a car accident and suffered whiplash just a few years earlier. Anyway, I had done all of the above as far as acupuncture, etc. to no avail. The pain just kept coming back until it was a constant part of my daily life.
I don't know if Ronald's idea would have helped me but it surely would not have hurt. Go for it, do whatever you can to get the doctor to understand the pain you are in.
Cathy In MD
Cathy, if Johns Hopkins is backlogged, you might also investigate the nearby University of Maryland Medical Center. In years past, they've had several doctors on staff who were well trained in both neurology and neurosurgery for chronic neurological face pain.
Regards, Red
Hi Red,
I checked there and did in fact find a doctor. I am looking into the possibility of if he will take my current insurance, which is Medicaid. I should also learn soon if I will be getting disability and I am not sure if I do, how that will impact things as far as insurance so I am waiting to hear. I found a Dr. Neil Porter at UMMC.
Thank you,
Cathy In MD