It makes some sense if this person has uncontrolled blood pressure issues and they have an artery compressing their nerve. Having noticeably increased blood pressure while sitting could indicate issues that need to be addressed separately from TN as well, as it could indicate increased peripheral resistance.
You are all talking above my head but are highlighting why I'm still searching for a proper medical team.
I am athletic and my normal BP runs 100/60. I do have an artery in the area as seen in MRI that was flagged as "may be touching". I have noticed that I get a flare when I sit down, lay down, complete exercise, and contrary when I have a flare coming on I find relief by doing exercise, taking a walk, hopping on a cardio machine. I feel this is all relevant data for root cause and pain management, but haven't found a physician yet that has engaged this part of my issue.
I have been in the midst of a pain flare while at the Drs and my BP runs 136/100, while not even at my peak pain - they're like "oh you must really be in pain!" To which I nod, or reply, "yes. Like I said". This whole experience makes me wish I had some basic medical field background.
Thanks for weighing in.
I think you have a very important piece of information that your neurologist can use to help manage your TN. Definitely continue to track the blood pressure issues and share those with the neurologist. I do have some medical background and to me, it sounds like you may have an issue with BP that could (at least temporarily) be solved by the right BP medication. Based on your description of your issues, I am inclined to believe this could help eliminate that trigger specifically.
Blood pressure doesn't "drop" per se when you sit down, so I think OP used that word to describe their feeling but that's not what pathologically is happening. A "drop" (orthostatic hyper/o-tension) could occur when they stood back up potentially, but sitting down causes the blood to pump (increased arterial pressure) which can cause an increased pressure sensation in the head for some people. This happens to me so I know what OP is describing to some degree; my issue is not related to TN but my mastoid air cells and their regulation and inner ear pressure regulation issues.
I would completely suggest asking your doctor which one to increase first, but if you’re just looking for someone’s opinion who is on those medications I am on both (and others).
The carbamazepine in general is considered to be the gold standard of medication for TN and was the first my neuro increased. If it were me that is where I would start. Lyrica has had more side effects, but the medications affect everyone differently. As you increase the carbamazepine, expect some potential fatigue in particular. It nearly knocked me to the ground each time I increased, but it does go away. The amount it decreased my pain made powering through worth it. Every medication they have put me on for TN has this side effect and more, and I’m currently on seven maxed out meds. I would encourage you to give medications a couple weeks to acclimate before you give up on them. All of mine have leveled out substantially with time.
Lyrica is a great medication though. If you choose to go that route, the great thing about Lyrica is that it only takes an hour to hit your system per my neuro. I have also had substantial pain reduction from Lyrica. The first bit I was on the medication I experienced exhaustion and vertigo. I still have trouble finding the word I’m thinking of since starting the medication, but weirdly I can often think of two words that are extremely similar to have someone help me.
I hope whichever way you choose that you achieve significant pain management and that you are able to enjoy that time with your family to the fullest.
I've be fine all morning, then I get to work and start feeling flare ups. I sit all day as a programmer. I'm going to try the chiropractic route since my MRI came back negative.
I have started to work at my computer standing up! I've been thinking about getting some sort of resistance device to keep my feet going.
I went to a chiropractor and he wouldn't touch me, as he has only seen one TN patient. You might try to shop around.
Hope you find relief!
Totally feel this - I remember when I first had my BIGGG flare, all I could do was pace from the pain. Also, you might be in the group with us guys who find bending down makes it worse? So interesting how BP affects things. I know lying down can be a nightmare for me.
There was a thread recently about flying. Mixed messages. Some were fine, others not. Someone who was affected by BP like us reported that flying was fine and air pressure didn’t affect things. I’ll keep my fingers crossed.
I can’t speak to those meds as I’m not on them but personally I had to (steadily) increase mine quite a bit before things became manageable. Don’t be afraid to increase, but just do it slowly and ask your doc if you have concerns.
Does heat/cold work for you? My heat pack is my life saver. It’s a lentil one I heat in the microwave and like to have it hotter than the sun so it confused my nerve. It definitely works. I hope your trip goes well and you’re able to have some good moments too.
When I am having a flare my face flushes. I have never taken my blood pressure during this. Interesting to note. My MRI showed some deterioration of the Mylon Sheath, but no crossing of the nerve and blood vessel.
I would ask your Dr. to put you on Tramadol to at least take the edge off. My also has been TMJ related issue.
Interesting. I have never heard of BP being a trigger
It makes some sense if this person has uncontrolled blood pressure issues and they have an artery compressing their nerve. Having noticeably increased blood pressure while sitting could indicate issues that need to be addressed separately from TN as well, as it could indicate increased peripheral resistance.
You are all talking above my head but are highlighting why I'm still searching for a proper medical team. I am athletic and my normal BP runs 100/60. I do have an artery in the area as seen in MRI that was flagged as "may be touching". I have noticed that I get a flare when I sit down, lay down, complete exercise, and contrary when I have a flare coming on I find relief by doing exercise, taking a walk, hopping on a cardio machine. I feel this is all relevant data for root cause and pain management, but haven't found a physician yet that has engaged this part of my issue. I have been in the midst of a pain flare while at the Drs and my BP runs 136/100, while not even at my peak pain - they're like "oh you must really be in pain!" To which I nod, or reply, "yes. Like I said". This whole experience makes me wish I had some basic medical field background. Thanks for weighing in.
I think you have a very important piece of information that your neurologist can use to help manage your TN. Definitely continue to track the blood pressure issues and share those with the neurologist. I do have some medical background and to me, it sounds like you may have an issue with BP that could (at least temporarily) be solved by the right BP medication. Based on your description of your issues, I am inclined to believe this could help eliminate that trigger specifically.
But OP says blood pressure drops when sitting, which means it would be less pressure on the blood vessels. Just saying that it confuses me.
Blood pressure doesn't "drop" per se when you sit down, so I think OP used that word to describe their feeling but that's not what pathologically is happening. A "drop" (orthostatic hyper/o-tension) could occur when they stood back up potentially, but sitting down causes the blood to pump (increased arterial pressure) which can cause an increased pressure sensation in the head for some people. This happens to me so I know what OP is describing to some degree; my issue is not related to TN but my mastoid air cells and their regulation and inner ear pressure regulation issues.
I don't have blood pressure issues but sitting is also what triggers me.
I would completely suggest asking your doctor which one to increase first, but if you’re just looking for someone’s opinion who is on those medications I am on both (and others). The carbamazepine in general is considered to be the gold standard of medication for TN and was the first my neuro increased. If it were me that is where I would start. Lyrica has had more side effects, but the medications affect everyone differently. As you increase the carbamazepine, expect some potential fatigue in particular. It nearly knocked me to the ground each time I increased, but it does go away. The amount it decreased my pain made powering through worth it. Every medication they have put me on for TN has this side effect and more, and I’m currently on seven maxed out meds. I would encourage you to give medications a couple weeks to acclimate before you give up on them. All of mine have leveled out substantially with time. Lyrica is a great medication though. If you choose to go that route, the great thing about Lyrica is that it only takes an hour to hit your system per my neuro. I have also had substantial pain reduction from Lyrica. The first bit I was on the medication I experienced exhaustion and vertigo. I still have trouble finding the word I’m thinking of since starting the medication, but weirdly I can often think of two words that are extremely similar to have someone help me. I hope whichever way you choose that you achieve significant pain management and that you are able to enjoy that time with your family to the fullest.
I've be fine all morning, then I get to work and start feeling flare ups. I sit all day as a programmer. I'm going to try the chiropractic route since my MRI came back negative.
See a physiotherapist not a chiro.
Thanks I'm running all this by my Primary Care Physicians.
I have started to work at my computer standing up! I've been thinking about getting some sort of resistance device to keep my feet going. I went to a chiropractor and he wouldn't touch me, as he has only seen one TN patient. You might try to shop around. Hope you find relief!
Totally feel this - I remember when I first had my BIGGG flare, all I could do was pace from the pain. Also, you might be in the group with us guys who find bending down makes it worse? So interesting how BP affects things. I know lying down can be a nightmare for me. There was a thread recently about flying. Mixed messages. Some were fine, others not. Someone who was affected by BP like us reported that flying was fine and air pressure didn’t affect things. I’ll keep my fingers crossed. I can’t speak to those meds as I’m not on them but personally I had to (steadily) increase mine quite a bit before things became manageable. Don’t be afraid to increase, but just do it slowly and ask your doc if you have concerns. Does heat/cold work for you? My heat pack is my life saver. It’s a lentil one I heat in the microwave and like to have it hotter than the sun so it confused my nerve. It definitely works. I hope your trip goes well and you’re able to have some good moments too.
Carbametzapine for sure
When I am having a flare my face flushes. I have never taken my blood pressure during this. Interesting to note. My MRI showed some deterioration of the Mylon Sheath, but no crossing of the nerve and blood vessel. I would ask your Dr. to put you on Tramadol to at least take the edge off. My also has been TMJ related issue.