Thank you Candy
Hi Drewiz, yes you may have?
CFS may be bought on by a traumatic event such as TN & devastating that goes with it.
Hi thehoward, I am so sorry for all that you are dealing with & the pain that you are in. But at least here you can connect with those who do understand what it feels like to be you. It’s hard when you live your life & no one else has ever even heard of TN. Even yesterday, I shared a cab with a nurse or 20 years & she had no idea what it was.
You are so blessed to have a wife who understands. My husband blamed me for becoming sick & treated me poorly.
Yes, I'm there too. Psoriatic arthritis, fibro, Reynaud's, TN...all of which are pretty well invisible. I write for a living and now cannot write anymore...very much like you, thehoward. The cognitive stuff is unreal and I continue to have many problems with thinking I am saying/writing/doing something correctly when I am not. Even many of my doctors, while they may have heard of TN, have not treated someone with it so don't know how to take it into account. I'm going to apply for SSDI, which is so very scary...how do I "prove" I can't work? At least we have a place to commiserate!
Pam
I have tn and fibro, but that’s where the list currently ends. Lately I find that the two play this viscous game that goes in a circle as both tend to set the other off. It stinks. On the most part the fibro is rather controlled and what not. I wish it would be the same for the tn but its like a freight train plowing off the tracks and just builds memento.
Hi - I have Chronic Fatigue syndrome and Epstein Barr along with my TN as well. I know this is an old post but have you found any medications that work or are you seeing someone for the CFS? I'm on some medications through a specialist that is working with a scientist in Stanford. There is a theory out there that TN CFS and EB are interrelated. I'm going to start a petition to get more funding to CFS and TN. Would you sign? I think the CDC and WHO need to do more!
Candy said:
Sally,
thanks for the hugs. Yes, I inject 2 times a month. I actually deal with my problems quite well, but TN has thrown me for a loop. My pain is managed right now, but the meds are difficult for me. I am a very active 59 year old and these meds on top of chronic fatigue is hard to bare. I just took my grandsons home, and I was thinking that three weeks ago I was begging for the pain to stop and now I am hating the way I feel on these meds. I will not give up. Don't you give up either. :-))))))
I also asked this of someone else in this posting ....- I have Chronic Fatigue syndrome and Epstein Barr along with my TN as well. I know this is an old post but have you found any medications that work or are you seeing someone for the CFS? I'm on some medications through a specialist that is working with a scientist in Stanford. There is a theory out there that TN CFS and EB are interrelated. I'm going to start a petition to get more funding to CFS and TN. Would you sign? I think the CDC and WHO need to do more!
Drewiz said:
I ask believe I have chronic fatigue syndrome.
Hey, count me in! I was procrastinating about sending a post on this very subject for fear I would find myself alone. Preceding my 2 long bouts with what my doctor called "Atypical Facial Pain" - which later I came to believe was TN2 - and my one long bout with fibromyalgia (both of which persist), I experienced a long mono-like illness, which fits the description of CFS and EBS. I would experience bouts of it lasting weeks sometimes: low-grade fever or the feeling of it, chills without fever, achy glands, especially under my arms, fatigue. I was diagnosed with "activated" E-B virus. The pain never let up, however.
NO ONE here talks about a link between virus and TN, but no one anywhere talks about a link between virus and fibro either. I have always wondered whether virus affected my entire nervous system and this attack evolved into the symptoms I have experienced for a long time now, head/face and body. My fibro is still with me, but it is tolerable. Fibro has been called a pain amplification syndrome in which the body perceives stress as pain. I never actually feel a correlation between stress and pain (perhaps because the conversion is very efficient). I am basically taking meds that slow my nervous system down (in theory making it less sensitive): amitriptylene (routinely prescribed in earlier days for fibro and now for TN) and alprazolam. I have tried many new drugs to replace these, even attempting (without success) a detox from my protocol. But nothing seems to replace the combo of 100-150 mg of amitr/day and 3-4 g/day of alpraz. I've seen ATP derided as a wastebasket term, but I'm not sure TN is any less arbitrary. So many causes, different kinds of pain, patterns of pain, kinds of treatment (meds and surgeries -- e..g, MVD is really only for nerve compression by blood vessel, shown on an MRI), variability of results. I didn't know what "breakthrough pain" was until I determined that TN1 patients often have periods without pain. Except in my 20s, I haven't had any.
PLEASE SHARE ANY INFO YOU HAVE ON A "THEORY OUT THERE"
There are 15 inches of snow on the ground and despite decades of pain, i sink into speculation that my wife thinks I'm loafing. The TN pain is not visible. Neither do I look worse for the wear after two mild strokes and heart disease. I'm not really without the strength, but the balance is gone (that is visible) and I get short of breath easily. Perhaps they think I'm faking. I just feel badly about not being able to pitch in like I used to. I'm sure Google will come up with technology that can put them in my skin fro an hour and show them what it feels like to feel like me, but until then you will have to rely on empathy. And us.
Karen said:
I also have Fibromyalgia and TMJ along with TN. I had the other two for about 10 years before I developed TN. I have found that some of the drugs I take for TN help my Fibromyalgia: Baclofen and Topamax. I weaned off of these meds in the Spring, hoping to get pregnant. I didn't realize how much better the Fibro had gotten until I weaned off of them. Back on meds now, pain too bad to stay off of them.
i think when people say things like "you look normal" or "but you look so good" they are actually trying to help and make us feel better a lot of times. I think most people don't realize how these words can be frustrating .Sorry to hear you are suffering so much! Hoping for better days ahead for you!
I have TN1, MAV (Migraine Associated Vertigo), vit B12 deficiency, HSV1 and Otological problems.
Hi Howard!
I am so glad you posted what you did. You are not alone in this with the TN/EB?CFS and all the other 'wonderful' things we have going on. I try to stay positive and optimistic about this but it's so hard. I saw your post below where you mentioned that you think some people think you're faking. I wonder if people think the same thing of me at times. My lip stays numb all day and night and then the pain comes and goes in different forms on my face, behind the eyes, on the eye lids,, you name it I have had it. It's awful. You're so right that no one talks about the lin! There is def a link here, I know it!!!
You know I don't even know what kind of TN i have, if my neurologist told me I must have forgotten with teh memory loss I have. Ugh.....
I will ask my boyfriend to get me the info of that study that he found so I can share it with you! I'm moving this weekend (boy that hasn't helped with my CFS or TN) so I may not be able to get you the info until Tuesday but I will get it to you. Once I get the petition all written up I'll reach out to all of you guys with the link or how to sign.
thehoward said:
Hey, count me in! I was procrastinating about sending a post on this very subject for fear I would find myself alone. Preceding my 2 long bouts with what my doctor called "Atypical Facial Pain" - which later I came to believe was TN2 - and my one long bout with fibromyalgia (both of which persist), I experienced a long mono-like illness, which fits the description of CFS and EBS. I would experience bouts of it lasting weeks sometimes: low-grade fever or the feeling of it, chills without fever, achy glands, especially under my arms, fatigue. I was diagnosed with "activated" E-B virus. The pain never let up, however.
NO ONE here talks about a link between virus and TN, but no one anywhere talks about a link between virus and fibro either. I have always wondered whether virus affected my entire nervous system and this attack evolved into the symptoms I have experienced for a long time now, head/face and body. My fibro is still with me, but it is tolerable. Fibro has been called a pain amplification syndrome in which the body perceives stress as pain. I never actually feel a correlation between stress and pain (perhaps because the conversion is very efficient). I am basically taking meds that slow my nervous system down (in theory making it less sensitive): amitriptylene (routinely prescribed in earlier days for fibro and now for TN) and alprazolam. I have tried many new drugs to replace these, even attempting (without success) a detox from my protocol. But nothing seems to replace the combo of 100-150 mg of amitr/day and 3-4 g/day of alpraz. I've seen ATP derided as a wastebasket term, but I'm not sure TN is any less arbitrary. So many causes, different kinds of pain, patterns of pain, kinds of treatment (meds and surgeries -- e..g, MVD is really only for nerve compression by blood vessel, shown on an MRI), variability of results. I didn't know what "breakthrough pain" was until I determined that TN1 patients often have periods without pain. Except in my 20s, I haven't had any.
PLEASE SHARE ANY INFO YOU HAVE ON A "THEORY OUT THERE"