Last night I went to bed with very mild TN pain on right-side, within 10mins of laying down I had an awful throbbing pain attack.
Pain was a level 9 all around my eye, ear, forehead and jaw teeth area, I could actually hear my heart beat through my ear.
I have had this happen before, but last night seem to be more intense.
The last 3 years I have had to sleep with 5 pillows under my head, this elevates me at a higher sleeping position. If I lay down flat I feel this tremendous pressure in my head which is unbearable.
Hey Wes! I am wondering if you had any storms or barometric changes in your area. My pain ALWAYS ramps up during weather changes and in Michigan right now we have fierce winds and rain predicted all week. I thought of going outside and screaming at it (the wind) last night...but wind triggers my pain as well.
Anyway, that is my thought on what may be the cause of more pain than normal. Oh, one more thing, when I do know of a storm coming I can take extra pain meds and a Klonopin and sleep through the storm....no, I didn't do that last night...sometimes I'm a glutton for punishment.
Hope you get this figured out...hit me up for info any time.
Hi Laurel, OMG! yes we had a lighting and thunder storm yesterday afternoon here in UK, I didn't even think that may have been the cause.
I have been living with TN type 2 for 7 years (since 2007), and because the pain is with me every single second of everyday, its hard to understand when the pain is at its worst. At times the winter months seem worst, but then the summer months are also generally the same. I have never really separated the seasonal changes regarding atmosphere pressure etc, this is something I need to read-up on.
I have had several pain free days these past few weeks, but yesterday I felt weak all day and could feel the TN pain creeping up in the background, but I have learnt to ignore the level 5/6/7 pain, its when the pain hits 8/9/10 I find it hard to manage.
Here in the UK, I feel there is not much knowledge regarding TN, especially type2. I have tried all the meds even though I have a real phobia of medication. I have lessoned the meds to see if I can fight the TN, it seems the TN has changed me and made me stronger, but it has also changed my life (I'm worried about the TN effecting my family).
I hide the TN from my daughters, I dont like to show them that daddy is in pain. My wife knows and helps and understands hugely, she is a god send.
Some days it seems there are patterns to this TN pain, but then other days nothing fits and we are left fighting a loosing battle. Laurel, I am so glad you have mentioned the barometric atmosphere changes, this is defiantly something that fits regarding the storm.
I'm glad I could help Wes. I understand about keeping your pain from the children etc. I live with my Daughter and her family plus two of my grown sons, one who we care for after a hit and run accident in which he suffered massive injuries to his legs and a Traumatic Brain Injury from bouncing off the roadway on his head.
I have several places on the property that I can go to suffer in private...my Grandbabies are so sweet and dear and worry about anyone suffering any kind of pain. My grown children are the same way so I hide from them as well. The are very compassionate and validating but hate seeing me in such agonizing pain as well as all doped up from the pain medications but the meds give me control to where I can actually get some farm chores done or sit and do crafts with the children without wincing in pain and crying. I definitely take very strong pain medications but don't, myself, feel high or dopey at all, only get pain control. I think they just worry because of all the hype and social stigmas attached to opiate pain medications. My practitioner has had several talks with them explaining the severity of the nerve pain that doesn't stop. They understand but still worry all the time. I have other conditions that jump in there and play with each other and sometimes it is difficult to tell what of those is causing discomfort. I just have to stick to my medicine regimen and for the most part, I make it through each day without too much trouble. With Cranial neuralgias you just have to keep trying whatever your doc tells you to until you come upon a regimen that works for you. I know you don't like taking strong meds but it takes strong meds to combat this pain. Find what works for you first to squash the pain and then once you've found that out you can start seeing what you are capable of doing in the areas of work and homelife and hone the abilities that the freedom from pain will give you. You need to free yourself from the guilt that comes with not feeling like doing anything...that guilt will drag you down and make you mean. Instead, rest when you need to, figure out what it is that you can't do any longer and ask for help in those areas, maybe from the children who, want to help Daddy and no matter how hard you try to hide it, they know you are not well and hurting and it gives them great pride to be able to help you out when you're down.
It's such a gloomy day here in the Northwoods of Michigan...I am to go out with a girlfriend today for a walk in the woods to look for Morel Mushrooms (yummy). I wish the sun would peek out though, it's still a bit chilly and that hurts me...ah well, I'll wear a winter hat.
I hope this letter finds you warm and somewhat pain free Wes. My best to you and yours!
I look forward to talking with you again. Be well!
I feel and hear my heartbeat thru my ear on my tn side about once or twice a month. It is a bit unnerving. If you do a search for this topic there are a few of us who have had this. Just ran thru this the other day and yes, there was a terrible storm yesterday.
Since TN started three years ago, I hear my heartbeat in my ear 24/7. It is called pulsatile tinitus.
I also have a dysfunctional Eustachian tube, so I constantly have problems with weatherchanges (airpressure changes), earpain, earpressure, stuffed feeling in ear.
One of my doctors told me to only sleep on one pillow. He said sometimes it will make the pain worse if your head is in an odd position. That is the only way I sleep now. I went out and bought an expensive pillow and when ever I go somewhere I take it. If I fall asleep on the couch and my neck and head are in an odd position I wake up with a TN attack. What works for one doesn't work for everyone but it seems to help me some. The perfect way for me to sleep in sitting in an recliner with my head and neck straight and still but I can't sleep in a chair all the time.
I completely understand I haven't been able to lie down in bed ( or at all ) for over a month! . Being 7 mnths pregnant is just the icing on the cake . I was beginning to wonder if I was crazy because my pain always seems worse in the evening and I will be in a full blow attack if I lie down.
Mine is always worse in the afternoon and evening. By the time I get off work in the afternoon it is getting bad. I just pray to make it home but I can't do anything when I get there. I wish you all the luck. I can't imagine how hard it would be to have a baby and deal with TN. I won't keep my grandchildren unless my husband is home. I know if I am in a full blown attack I couldn't take care them. Good Luck with the baby. I hope you have a good support system.