This weekend feels like it set me back about 6 months.
I have been eagerly waiting for my appt with my new neurologist. It's tomorrow. I will remind that my diagnosing neuro retired without my knowledge in Jan. I didn't even know until I tried to make an appt.
I only had enough refills to make it to about one week before my next appt. My GP promised to get me refilled until then.
My pharmacist sent the auth to my GP last Wednesday. It is Monday night and I am still without meds. My meds ran out Friday night. I was hoping to pick them up Saturday morning. My doc office had 3 full days to sign and return before the weekend and they didn't. My pharmacy has sent 3 faxes on my urging. There is a medical assistant with whom I've been dealing that is rude beyond imagine anytime I've had to speak with her the last 3 months. She keeps denying any faxes coming through. I gave up calling after the 3rd fax. I have a really serious letter for that doctor and his office regarding little miss med assist. Oh, and my pharmacy refused to give loaner pills through the weekend.
I am beyond exhaustion and pain. I went off my meds abruptly, no stepping down and I feel like I've been hit by a truck. I have a friend who is a pharmacist in Seattle and she notes it is probably withdrawal symptoms. I am so very frustrated, confused, upset, and most of all, in pain. For the first time, I've been feeling it on one side of my tongue also.
The past month I've also had more weird symptoms besides the numbing epsiodes. Out of nowhere, I will get sharp burning pains in my feet. Sort of like stabbing. It makes me grab them and try pushing on them to get it to stop but it doesn't. The whole thing lasts maybe a minute and then they are gone. Always just one foot or the other, usually on one side.
Sometimes I think I make more of symptoms than it really is but at this point, anything could be a symptom.
I am really praying to get my meds tomorrow from the new neuro and I pray that the pain subsides soon. I just want this all to go away.
Monday, May 4, 2009
Monday, April 6, 2009
Less Frequent?
Since I haven't been posting on a regular schedule, that must mean my attacks are less frequent? Well, yes and no.
Since the removal of tooth #14, I have not had any TN like pain on the left side (so it was probably just tooth related pain, as I suspected). Good news. However, I have had several episodes of TN on the right side. Not so many zingers, mostly the achey background burning pain - bottom right side along the gums. I can just feel it inside but when I touch anywhere along the gum line I don't feel it from the pressure. I have been having these achy episodes almost constanly now for a week. The pain is a 4 or so on a scale of 1 to 10 so it's pretty tolerable. I have almost forgotten what a 10+ feels like.
This week I have been plagued with 2.5 migraines. I say .5 becasue one was teetering. haha. They both started in the back of my head and one radiated to right behind my left eye. Oh baby the pain. Numbness in my arm, hand, and fingers is still here. Have a new thing going on - the soles of my feet have been feeling tendinitis-y. Off and on of course. Mostly when the rest of me is going to pot, the feet just join in.
I am on a new medication too. I went to my GP about 5 weeks ago. He did a full thryoid panel and found that my free T4 was not quite up to par. I am taking 25mg of levothyroxine. I go back next week *the 15th* for a new blood draw to see how it's working (or not).
My next neuro appt with my new neuro is in 4 weeks. This doc is also a headache specialist in the headache clinic so maybe he can figure things out better than the last office I was at. I just want to feel like myself again.
I have been caffiene free 90% of the time the last 5 months or so. I really believed it's helped alot. My 12th acupuncture visit is the Thursday. Coleen has worked wonders, I really believe it. I feel so much better the days following my visits with her. I missed 2 weeks of apts starting 3 or 4 weeks ago and since then things have gone downhill symptomwise. I probably just reversed all of her hard work.
Symptom: Double vision, "vertigo in my eyes" feeling - can't focus sometimes and have to blink multiple times or squint to keep from feeling lightheaded and dizzy when I can't see. Even with my glasses I get this. It really makes me want to throw up.
I've also been getting feverish/elevated temps off and on. My normal temp is around 96.9 degrees and lately I've been hitting around 100 to 101. The heat has been off in my house all day. It's only 70 degrees in here and I feel like it's 100. I am sweating and want to jump in a bathtub of ice.
Since the removal of tooth #14, I have not had any TN like pain on the left side (so it was probably just tooth related pain, as I suspected). Good news. However, I have had several episodes of TN on the right side. Not so many zingers, mostly the achey background burning pain - bottom right side along the gums. I can just feel it inside but when I touch anywhere along the gum line I don't feel it from the pressure. I have been having these achy episodes almost constanly now for a week. The pain is a 4 or so on a scale of 1 to 10 so it's pretty tolerable. I have almost forgotten what a 10+ feels like.
This week I have been plagued with 2.5 migraines. I say .5 becasue one was teetering. haha. They both started in the back of my head and one radiated to right behind my left eye. Oh baby the pain. Numbness in my arm, hand, and fingers is still here. Have a new thing going on - the soles of my feet have been feeling tendinitis-y. Off and on of course. Mostly when the rest of me is going to pot, the feet just join in.
I am on a new medication too. I went to my GP about 5 weeks ago. He did a full thryoid panel and found that my free T4 was not quite up to par. I am taking 25mg of levothyroxine. I go back next week *the 15th* for a new blood draw to see how it's working (or not).
My next neuro appt with my new neuro is in 4 weeks. This doc is also a headache specialist in the headache clinic so maybe he can figure things out better than the last office I was at. I just want to feel like myself again.
I have been caffiene free 90% of the time the last 5 months or so. I really believed it's helped alot. My 12th acupuncture visit is the Thursday. Coleen has worked wonders, I really believe it. I feel so much better the days following my visits with her. I missed 2 weeks of apts starting 3 or 4 weeks ago and since then things have gone downhill symptomwise. I probably just reversed all of her hard work.
Symptom: Double vision, "vertigo in my eyes" feeling - can't focus sometimes and have to blink multiple times or squint to keep from feeling lightheaded and dizzy when I can't see. Even with my glasses I get this. It really makes me want to throw up.
I've also been getting feverish/elevated temps off and on. My normal temp is around 96.9 degrees and lately I've been hitting around 100 to 101. The heat has been off in my house all day. It's only 70 degrees in here and I feel like it's 100. I am sweating and want to jump in a bathtub of ice.
Thursday, February 26, 2009
Unilateral, Bilateral
Thank you to all my lovely friends at livingwithtn.org
Your answers to my bilateral question were so very helpful. At this time I am pretty convinced that it's tooth #14 resposible for the zingers on that side. I have finally, FINALLY, got an appointment on Friday the 6th for extraction. If I'm still having pains and zingers after that, then I will mention it to the neurologist...whom I can't get in to see until MAY! There are only 3 neurologists that I am aware of in Spokane who treat TN. I am thinking of calling the other two to see if I can get in sooner.
On another note, the numbness is coming back. All that fun stuff I mentioned awhile ago... I will mention this to the acupuncturist tomorrow.
Til next time,
Your answers to my bilateral question were so very helpful. At this time I am pretty convinced that it's tooth #14 resposible for the zingers on that side. I have finally, FINALLY, got an appointment on Friday the 6th for extraction. If I'm still having pains and zingers after that, then I will mention it to the neurologist...whom I can't get in to see until MAY! There are only 3 neurologists that I am aware of in Spokane who treat TN. I am thinking of calling the other two to see if I can get in sooner.
On another note, the numbness is coming back. All that fun stuff I mentioned awhile ago... I will mention this to the acupuncturist tomorrow.
Til next time,
Sunday, February 22, 2009
Been Awhile
So it's been over a month since I've posted.
The frequency of attacks has been lessened by medication. I don't have them as often. About twice a week. One being mild and the other being intolerable. Actually right now, I have had an attack for the last hour. None of the zinging pains but a lot of the burning tingling pain. I have nothing in the house for it. Not even an ice pack. We spent the weekend moving so not everything is here and ready to go just yet.
I am hoping this will subside soon. I want to curl up in a ball in the dark, with no noise but it's impossible. I have a screaming two year old and a baby to attend to so this blogging is my only peace of mind.
Til next time
The frequency of attacks has been lessened by medication. I don't have them as often. About twice a week. One being mild and the other being intolerable. Actually right now, I have had an attack for the last hour. None of the zinging pains but a lot of the burning tingling pain. I have nothing in the house for it. Not even an ice pack. We spent the weekend moving so not everything is here and ready to go just yet.
I am hoping this will subside soon. I want to curl up in a ball in the dark, with no noise but it's impossible. I have a screaming two year old and a baby to attend to so this blogging is my only peace of mind.
Til next time
Friday, January 23, 2009
Ouchies
Today was a bad day. Attacks were back to back. I even went to 4 carbamezapine today. Still having that dull burning background pain. Haven't eaten all day. Well wait, I started eating breakfast and that's when the pain erupted. No food since then. Too risky.
Sunday, January 18, 2009
Worsening
I want to document some symptoms before I forget when I had them...
In the past week:
Depression - severely and combined with exhaustion (sleeping 12+ hours).
Severe joint pain, especially in fingers and knees
Arm & leg weakness - can't walk sometimes and can't lift the baby
Arm and leg numbness - mostly arms. Can't type even for long periods of time because my hands and forearms start tingling with some minor pain
Migraine - just one, today. Couldn't move my right eye very well without it hurting. Tried to move my eyes around and the right one just wouldn't cooperate. Hurt to move it to the left or right and left like something was in my eye when I moved it down. Actually, when looking down, my right eyelid closed, couldn't control it. Very scary as this was the same eye that had was "desensitized" during my neuro exam in early Dec.
Dizziness - lots of it - causes me to stumble
Eye strain or eye exhaustion - here and there - even when wearing corrective lenses
Only 2 episodes of TN that were quick and tolerable.
I DID NOT up my carb permanently - I did it for 2 days and then decided to reverse my decision.
In the past week:
Depression - severely and combined with exhaustion (sleeping 12+ hours).
Severe joint pain, especially in fingers and knees
Arm & leg weakness - can't walk sometimes and can't lift the baby
Arm and leg numbness - mostly arms. Can't type even for long periods of time because my hands and forearms start tingling with some minor pain
Migraine - just one, today. Couldn't move my right eye very well without it hurting. Tried to move my eyes around and the right one just wouldn't cooperate. Hurt to move it to the left or right and left like something was in my eye when I moved it down. Actually, when looking down, my right eyelid closed, couldn't control it. Very scary as this was the same eye that had was "desensitized" during my neuro exam in early Dec.
Dizziness - lots of it - causes me to stumble
Eye strain or eye exhaustion - here and there - even when wearing corrective lenses
Only 2 episodes of TN that were quick and tolerable.
I DID NOT up my carb permanently - I did it for 2 days and then decided to reverse my decision.
Saturday, January 3, 2009
It's January Already!
My neuro retired in Dec but on his last day he upped my carbamazepine to 800mg/day from 600mg.
Doing the best I can in the situation and I am thankful for my husband, parents, and inlaws.
I've found that prayer and my faith have been a staple. Faith makes the negative look so much brighter.
For anyone who reads this, please know that I am not trying to be a martyr or a complainer. This blog helps me to track my triggers, treatments, and progress. Without it, everything is a haze. I hope it also helps all of the people on the right (in the TN widget), because I know their blogs, forum discussions, and comments on LivingWithTN have helped me.
Doing the best I can in the situation and I am thankful for my husband, parents, and inlaws.
I've found that prayer and my faith have been a staple. Faith makes the negative look so much brighter.
For anyone who reads this, please know that I am not trying to be a martyr or a complainer. This blog helps me to track my triggers, treatments, and progress. Without it, everything is a haze. I hope it also helps all of the people on the right (in the TN widget), because I know their blogs, forum discussions, and comments on LivingWithTN have helped me.
Subscribe to:
Posts (Atom)